Expressive Aphasia

My book is out

2011-04-16T05:22:00.000-07:00

Dear Friends,
Some of you know about this project that I have been working on for three years now, some of you never heard about it. A picture book for ages 3-7, that I have both written and illustrated. The name of the book is : "Jeff, the lemonade drinking, pizza eating Raccoon of Bethesda". It has recently entered circulation Just 2 days ago it got listed on Amazon.

Three years ago I started writing and illustrating this book, after several re-writes and re-illustrations it has come to its final form as of Spring 2010.

Then I have hand made a dummy-version of the book and sent it to various publishing houses. As you can imagine in this economic environment, no chance of me going through established publishers . After 1 year of pushing the system, I decided to go guerilla and self publish, because I liked the story so much and wanted it to see the light of the day…

In the end it is now published by the publishing house of Amazon, called CreateSpace.

CreateSpace is an on-line, on demand, selfpublisher. You do all the editing, design management etc yourself, upload it to their site, CreateSpace assigns you an ISBN number and makes the book available for distribution in many on-line book sellers like Amazon, even the conventional distributers like Barnes&Nobles and Target.

But it doesn’t actually deliver it to the store. You have to create the demand for it. People have to hear about it, get exposure to it etc, so that they can go and buy it on line.

Actually, it is quite amazing, when somebody demands the book, it is printed on a one by one basis. You can say it is custom printed. 3 years ago this didn't exist.

I don't have a website for it yet but it will come with my friend Zeyno's help. For now I can give the link to

CreateSpace e-store and

Amazon e-store where it is sold

I will keep you posted.

PS:

Told you! After suffering a stroke and or having lost your speach, there is light at the end of the tunnel! It can be in a way even liberating to be able focus on one thing that you always wanted to do but never did in your life.

Stay well
Banu

Volunteering

2010-09-01T07:12:00.000-07:00

I’m at home almost the whole day now – alone. My son goes to school from 9 to 3. Under normal circumstances you would say: “Hey! Great! What else do you want? You can relax the whole day.” But it is not like that at all. Like with any motor activity you have to practice, to improve. Well staying home alone doesn’t provide me with the best of conversation opportunities. So I have to be among people, conversing with people, yet I am not ready to work. Out of four main arteries that supply my brain, one is completely blocked, one is working at 20% level, when I lack sleep my heart and vascular system work overtime. So for example when I get a cold or flu, best course of action for me is to lie down and wait it over (given the six different medications I’m already taking), instead of taking two paracetamols a going to work. It is a matter of survival I guess.
So for the moment going to a workplace is not an option. I inquire about possible volunteering opportunities: at the local library (no: the only position is shelving books), at the office of my speech therapist (no: we only employ professionals), at my Condo’s management office (no: we don’t do volunteers – which is a mystery to me as they certainly can do with some help around the office). At the local YMCA (Please fill in this form and we will call you)…
I thought that with my work credentials, doors for volunteering would be wide open, so much so that I would have a hard time picking and choosing. Well, so much for being overwhelmed by offers…
Finally my son’s school’s founder/principle agrees for me to come to the office to help. My son goes to a Montessori school – Lone Oak Montessori of MD. It is managed by this very dedicated, very delightful young lady of 75 years. She has a soft spot in her heart for my condition because her husband of many years, suffered from a brain attack like mine, 15 ago, just as they were ready to retire. They did have plans and all for their new life and this happened. He didn’t die, but was left painfully handicapped on the left side of his body, and lost his speech. Later on he taught himself to sign language, and could speak with his wife again. Our principle calls him affectionately, “My computer”, as he is so smart. (Bob Swan has since passed away in 2008. God bless his soul).
So I start volunteering at Lone Oak Montessori School. After I say farewell to my son at the classroom door, I start at the desk in the corridor that doubles as an office. I had thought that in the mornings, while the staff is busy at the door, I could answer the phone or give messages to people. Contrary to my expectations, though, there are no phone calls. Everything seems to be running smoothly here. The office at the main campus seems to be handling everything. Hmmm. So what work can I do here? Staff and teachers go out of their way to create me some work. One day I cut paper to size, next day I am in the gluing business. I love helping this way, and God knows they need help. But speaking opportunities while cutting pink 3”x5” s is quite limited, it is all manual work. At the same time I have made a commitment…
I must start looking at other speaking opportunities while fulfilling my commitment at my son’s school.

Therapy on my own: Writing

2010-09-01T07:11:00.000-07:00

The first act of writing – outside of writing exercises- was two letters. I wrote them to my son and my husband. In case something happened to me I wanted them to know what I felt for them.
Now what I want to do is to write the aphasia experience.
Why do I want that? It is a morbid subject. I don’t want to muse on it. The chances are the moment I start writing about it I am going to think about it. That will bring feelings of anxiety, I don’t want to do it. Yet I have to do it.
After the stroke, after the initial shock of the stroke, our family had no idea what we would be facing in the future, no idea of how much I would recover. At the hospital I remember the speech therapist preparing us maybe for a life without any speech at all. Then I remember my friend Zeyno, doing oodles of research on the net, discovering a person, who lived through aphasia, found his voice again and told the story about it.
I remember how impressed we all upon listening to a University of Michigan testimonial on the web about a woman recover her speech completely after her stroke.
So as much as don’t want to think about my stroke, I must speak up to tell people what they may be facing. That there is hope, it is not the end of the world.
So, I decide to write an essay to Newsweek magazine. I have been a Newsweek fan for quite a long time: I like Anna Quindlen, their arts section; I even developed a certain taste for George Will’s column, though I disagree with every word he says… I especially enjoy their “My Turn” section, where ordinary people write essays about extraordinary, or even seemingly very mundane topics with a very interesting twist.(*: This was before Newsweek completely changed its design and its content). I read this essay in every Newsweek . So I start writing.
Writing about my experience, I find, is neither a catharsis nor a happy experience. It is almost a job to be done. In about a month I have the essay down on paper. Then I ask for my husband’s feedback. Incorporating the feedback I go to a friend of mine, and for her neutral opinion. With her as my sounding board I write and re-write the essay several times. Once I feel ready, I submit the essay to the Newsweek, “My Turn” website. Then forget about it.
Exactly three months later, I get an e-mail back:
“Dear Banu,
Thank you for your submission. We would like to consider it for publication for Health Triumphs, our health-related, web-only My Turn. Please let me know if you are still interested.”
Yes, I’m interested. I’m interested to get the story out to the masses, not only to stroke patients, but to everyone, who is a potential patient.
We go back and forth, clarifying a few things and editing a few things… Finally on Wed, 4/11/08, the essay is published in Newsweek’s web edition.
I am glad. Not only have I done a nice thing for the family of stroke patients, it is a nice stroke on my ego too.

End of therapy as we know it

2010-09-01T07:10:00.001-07:00

February 21, 2008 the end of speech therapy for me. Jan also lets me go. This time I feel ready. I feel that I can stand on my own two feet now. So it is not a problem. I’m not afraid to make my own phone calls. I am ready to approach complete strangers. I’m ready to make my voice heard at PTA meetings…
That is just my feeling though, the returning of confidence that I can lead a normal life. Nothing may have changed outside but on the inside I feel ready to face the world.
A lot of things are still challenging:
The weakness of the right cheek and tongue,
My speech being still slurry (especially when I try to sacrifice clarity for speed)
Speaking vocabulary
Plus everything going south when I feel sleep deprived, meaning less than 8 hours of quality sleep.
But I can manage on my own now. I have plans.

Harry Potter

2010-09-01T07:09:00.000-07:00

Between coming from Istanbul and the new years I make no progress on the speech front, partly because I am alone again, with very little opportunity to speak. OK I must tackle that somehow, but what to do?
Reading out loud helps, but I have three issues with this:
1) Print size. After the stroke I have trouble reading small print, nobody offers any explanation for that. There seems something odd with my vision overall. I don’t seem to be able to visually focus on any one thing anymore. I go through the world visually experiencing it like my peripheral vision all the time. You know the feeling when you look onto something long enough that everything else kind of disappears, but you still see them. My experience has been a mild form of this. Nevertheless I am much more comfortable reading big print.
2) Interesting material: If I’m going to sustain this over long time, then like any exercise program I have to enjoy it.
3) Audience: It works much better if somebody is with me, so that I am forced to do it for at least 1 hour.
Meanwhile that November the 5th film in the Harry Potter series is released: “The Order of the Phoenix”. Mehmet and I go and see the film. I am a Harry Potter fan. I say this with great pride. I have read each book a few times, every two years or so, I read then again as bedside reading. The books a beautifully constructed, beautifully written, humorous and serious at the same time. The fifth book came out during the year of my post partum depression, in 2003. It helped me to go through the pain of that first year, like the return of a dear old friend. The first two books are in paperback, hence small print, but from third book onward they are in hardcover, nice and easy for me to read.
“May I read this to you?” I ask Mehmet after he comes home from work one day, after we put Kaan to bed, of course. Mehmet is ready to do anything that will help me progress. But he is not a fiction fan. He can spend hours reading scientific material, but I have never seen him reading fiction. Well, for my sake he will endure, I say to myself and we start. What we thought will last maybe for a week of 15 minutes of exercise turns out to be ongoing. After two months we still continue reading “Harry Potter”, 40 minutes to one hour sessions each evening. The beauty of the whole thing is multiple:
• Mehmet enjoys listening to the exploits of the famous boy wizard “who lived”, as much as I enjoy reading them.
• The sessions are long, they are a real exercise, to the point that I get tired in the end. They are long enough to have an impact.
• Right after each session I take my SSRI and go to bed, which, I believe helps with re-wiring in my brain. There is no conclusive evidence of that, but it works for me.
We continue reading until the end of the 3rd book. Then Mehmet becomes so intrigued about Harry Potter that he reads the sixth and seventh book by himself!

Fifteen days into the whole exercise, a friend of ours, who we haven’t seen for a few weeks tells me: ” There is much improvement in your speech! What did you do?” I smile from ear to ear, albeit for a second (later my left side droops – never mind).
It is amazing that there should be a noticeable improvement in just 15 days! It is like in skincare commercials: “You’ll notice a difference in just 15 days!” Only this time it is true!
There are many ways for practicing, but like many exercise regimens, if you enjoy, it becomes much more fun and it becomes sustainable. Besides I think that reading to an adult audience makes a great difference. First of all it becomes interactive, the expectancy of feedback is there. You become a little bit anxious, but not too much and in a safe environment.

Leaving Istanbul

2010-09-01T07:08:00.000-07:00

My mother in law’s surgery goes so well that one day after she comes home, she tries to cook and do laundry. There is going to be only a little amount of radioactive therapy, that’s all. After she recovers fully, we are on our way to Bethesda, our home.
Upon my return, I visit Jan, my speech therapist. She probes me and she has news! One month of forced talking in Istanbul, from early morning till late in the evening has taken its toll on me. Miraculously my speech is much more fluent now. The good news is that the fluency has translated directly into English, too.

My first encounter with old friends and relatives

2010-09-01T07:07:00.000-07:00

I am anxious. I don’t know why but I am anxious about seeing my friends. Somehow I fear that when they see me, they will feel sorry for me. I detest that feeling of course, as far as I know nobody in her right mind enjoys being pitied. But at this point I must talk about my personality, why this feeling is especially hard on me: “All my life, I thought of myself as a strong, confident, self assured, assertive person, who doesn’t give up, who even performs better under pressure, freely distributes advice… “
Now I feel like a vulnerable, wounded animal that has to show her soft underbelly.
The personality transformation I have experienced since my stroke has been very powerful. The stroke has been a great lesson in teaching me humility. Since then 15 months have passed. You would think that if I have learned my lesson, if I take everything easy, then why the anxiety? My mind tells me that my true friends will be so concerned about my health that they will be just relieved to see me well and alive. Yet the mind doesn’t always work tandem with the feelings, does it?
I call one of my closest friends up and tell her I have come. As soon as I hang up she leaves work, jumps onto one of the vaporettos that connects the European side of Istanbul with the Asian side and is at my mom’s apartment within hours. Then two days later four of my friends come. I have shared with them that I am not ready for a larger gathering, I tire easily and when there is more than one conversation going on my speech suffers. So we meet one by one with a great many of my closest friends. Sometimes they come to us, sometimes we go to them. What a delight! Of course all my anxiety is rootless. We never miss a beat in terms of connecting right where we left. We can even laugh about my speech deficiency as if it is a science experiment. The best part is: They know it is the old me, who loves them and cherishes them It so happens that I have a new feature, like a broken arm. Yes it is a handicap, but hey, who hasn’t got them?
Two of my friends have lost their dad’s to leukemia the past year. After having experienced all the pain associated with having a loved one suffer and eventually die, they too have grown a lot, emotionally. The more you live through, the more things you are a veteran of the more you grow. Growth must have a component of age, because things happen to your own body, that you never have guessed before, but also, growth must have another component outside of your physical age.
Now that we are middle aged, in our fourties, everything is much richer in scope. There are feelings I would read about in books in my twenties and think that I understood them, or feelings that were so foreign to me that I couldn’t fathom understanding them. Now I know that nothing is too far away, everything can happen to anybody anytime. Unless you are in their shoes, you cannot ever know how they feel or think. We should accept everybody as they are, nothing more nothing less. Who are we to criticize one another? And I know also another fact. I know that with time, this belief can also change. Just as my beliefs and knowledge have changed from my teens to twenties to my fourties then they can also change towards my fifties, sixties… With one’s individual and collective experiences it is bound to change, isn’t it?

Something Unexpected

2010-09-01T07:05:00.000-07:00

Upon their return to Istanbul my parents in law go through a routine check-up, as they do to get their medicare benefits. Surprisingly Mehmet’s mom shows high Thyroid levels in the blood. As Mehmet also has Thyroid problems he sends his mom to a specialist friend he has gone to medical school with. Nothing out of line he assumes, probably mom will start taking some medication to control her levels, that’s all.
Then one day in October he tells me that it is worse than anticipated. Mom has cancer. His friend told him the bad news over the phone. What to do?
Thank heavens it is a very slow progressing sort of a cancer, a nodule in the thyroid gland. The gland has to be taken out, after that we will see. We talk about whether or not tell the ‘cancer news’ to Mehmet’s mom. Eventually we – he – decides against it. It is better for the overall mood of mom not to know, we think. I know it is quite controversial here in the United States. Patient’s rights come first, and a doctor has to tell his patients. Plus everybody has a do-it-yourself attitude where -patients- want to take charge. But in Turkey we have a different attitude, not better or worse I think, just different, more fatalistic, more interconnected in the family… Because we fear that mom, if she hears the word ‘cancer’ will worry so much that it will not help at all with the healing process. Mehmet arranges the surgical operation for November, with the doctor, he tells mom that it is a benign tumor but needs to be taken out never the less.
We begin to pack our luggage for a trip to Istanbul. We will surprise everybody by suddenly showing up and knocking at their door. Why the secrecy? Because we don’t want them to do any preparation for us, which they will definitely do, if they get wind of our coming.
We knock Mehmet’s parents door at 9 o’clock in the evening.
Actually Kaan knocks at the door. Mehmet’s dad opens. His eyes become as large as saucers. “Nermin! Nermin! Quick come here!!!!!” We kiss, we hug. They are already in their pjs. Kaan laughs a lot. After maybe half an hour we leave them behind and drive to my parents. Again Kaan knocks the door. Mom answers. “Ahhh!” She grabs Kaan and hugs him. Within minutes we become a bundle of joy. It is amazing. Plus it is the first time my dad sees me after the stroke. He seems doubly happy.
The next few days pass with jet lag and a lot of telephone calls. Arrangements, friends, relatives… Mehmet’s mom is very upbeat. She is overjoyed that his son+family came all the way from the USA just for her operation. We can hear the pride in her voice because her son has honored her like this. Mehmet’s parents are people with very few material demands. Even their home is arranged that way. There is no “stuff’ no ‘clutter’. Everything has its use, they don’t buy anything unless it is absolutely necessary and they try to give away things they don’t use anymore. Which is in stark contrast with our home where we tend to hoard anything and everything. As an ex brand/marketing manager I can say that my parent in law’s lifestyle is a marketing professional’s nightmare. It is very amusing indeed. With the downturn in economy I make a mental note to learn a bit from that lifestyle. Because they are not into material things, our being there for the operation matters for them very much.
Nowadays I understand it completely, and it is not bogus: The most important drive in life is not “power” or “money” it is clearly “LOVE”. Everyone wants to be loved. That is what we strive for. But the way we understand the manifestations of love is different. Some value gifts, some value compassion, some obedience, some praise, some physical love… But in the end we all look for love. As for Mehmet’s parents, the language of love is in the deeds.

Back to normal feelings:

2009-10-07T08:38:00.000-07:00

Just as my brain-doctor (psychiatrist) predicted, almost six months to the day of my stroke, the feeling of euphoria started to subside. The feeling of “I can overcome anything that life throws at me”, is gradually replaced by doubt and anxiety. But I know the warning signs by now. After a visit to my psychiatrist, we decide to slightly increase the dose of the medication. But we have to be very careful not to increase the blood pressure levels at the same time.
Isn’t it amazing that exactly at the time where you need the highest spirits, your body gives it to you. Of course I would much prefer not to have any depression at all! Oh well, I’m happy with anything I can get at the moment.
It was so wonderful to feel like I’m 20 again, ready to face anything, armed and ready to change the world; less the anxiety of approval. Boy, was I glad to be back my old self again, albeit for six months. An experience I can draw energy from for many many years.
We continue the new slightly increased level of medicine until the summer.
Meanwhile, I discover something. The increased level of medication has a startling effect: My brain seems to respond better. I seem to speak better. Now, whether this is because of serotonin level increase in the brain that promotes neural connections, or because I have a higher quality of sleep now, I don’t know. I only know that there is a correlation. I don’t know the causality. It is a question for the science community to answer,
One thing remains certain though, however much you try to reach a patient, you cannot reach her unless her brain is open to help. Unless the chemical set-up in the brain allow her to be open to receive therapy. If you are depressed (and a lot of people are after a stroke), how can you be upbeat about doing any exercise? First you have to treat the mindset, then you can treat her.

Mehmet’s dad helps me

2009-10-01T09:49:00.001-07:00

Mehmet’s mom and dad are here. It is a new year, a new beginning as they say. What is my new year’s resolution?? Guess what??
By the time of the anniversary of my stroke I want to be more fluent in my speech. That’s all. I believe that goal is reachable. I mean, look at the progress I have made: from not being able to communicate at all, I am able gesture, mimic, speak at a conversational level… Surely I can speak more connectedly, more fluently in the next six months…
I must. There are so many things I want to do. First of all I want my son to be proud of me. As first generation immigrants, we already bring a different baggage to the table. I want to overcome that by integrating myself to my child’s life in an undisputable way: invite his friends over, get involved in the school, be friends with his friends’ parents…And do this in such a way so that my son wouldn’t be ashamed of introducing me around.
Everything on that front depends on effective communication skills.
Thank goodness I live in a community where people are so friendly. Every time I tell my story to someone they absolutely understand the hardship, congratulate the effort and genuinely go out of their way to accommodate.
In the new year (2007) Mehmet’s dad decides to help me on the Turkish language front. Every morning we sit down, I get my huge Turkish dictionary, starting from the letter “A”, we go down each page word by word, I pronounce each word. When I have difficulty pronouncing (which happens with every second or third word) he writes it down and works with me to hone it in.
We discover a method that works better than others: We call it “end to beginning method”. Especially with long words, you start with the last sounds and work your way to the first sounds. For example let’s say you want to say my name: “Banu Turhan”
You start with the last sound, when you have mastered it, move to the previous one :
An
Han
Urhan
Turhan
Uturhan
Nuturhan
Anuturhan
Banuturhan
I don’t know why, moving backwards works better for me. It just does. Maybe it is a quirk of the Turkish language, maybe not.
Mehmet’s dad works so diligently on this he even follows up with me. Only on the days I don’t feel well I get a break, otherwise I work on my mother tongue every day. If I get to publish my story in Turkish some day, I want to add a whole section with his work.

The "re-do"

2009-09-30T10:27:00.000-07:00

We start by reading word lists.
For example:
Advantage
Adventure
Advertise
……
Whenever there is a word I get stuck at, she says it, repeats with me, then lets me repeat it several times in extending intervals, all the while telling me to do it naturally, don’t get stuck at any sound, move your mouth like this…
In fact she doesn’t even need to say the last part. It is monkey see, monkey do. The moment my eyes get fixated upon her mouth, my own mouth follows suit. As we work through the word lists, my pronunciation becomes better, as is my stamina.
Sometimes, she lets me read a difficult article from Newsweek or something. Oh my oh my… If it wasn’t for the gentle soul sitting across me, I wouldn’t show my performance to anybody. It is one thing to read books to a 3 year old, it is quite another story to read this:
”The results may be big but the process shouldn’t be grandiose. From that perspective, he says, the democrats should have come forward and with relatively modest proposals that could be equally well received. The three plans put forth so far are striking more for their similarities then for their differences. “
Have you noticed how many words there are more than two syllables?
Jan doesn’t do this to torture me. But wherever I stumble, there she gets her clue to work with me.
She calls them strategies. “What is your strategy to say the word ’perspective’ “? She asks me. “What strategy?” I think. I didn’t know to pronounce a word you would need strategies?? Did you?
Slowly I learn. For example, let’s take the word “perspective”: It takes at least seven steps to pronounce the word “perspective”:
1) You start with the lips closed (for the sound ‘P’)
2) then you have to pull your tongue back (for ‘R”),
3) You have to bring your teeth together and smile (for ‘S’)
4) Lips closed again (for ’P’)
5) Back of tongue (for ‘K’)
6) Tip of tongue to the upper incisors (for ‘T’)
7) Lower lip to the upper teeth for (for ‘V’)
In other words; you have to remember to bring your lips together three times, while your tongue moves to the back of your throat and comes to the front to touch the teeth.
Every word has a, short hand, a strategy like that.
Let’s say you have mastered a word, but you have difficulty moving from word to word. Then the strategy is: think about the last sound of the first word and the first sound of the following word, think about how to combine these two sounds.
Under normal circumstances, one doesn’t think about all of the above, of course. Especially while trying to string meaningful sentences together. But if you are learning any new activity that requires muscle coordination, from scratch, you need that. Learning to play an instrument may be the best analogy there is. Before you learn how to play the violin, there is no section in your brain dedicated to “violin playing”. But you learn it, your fingers get more adept with every practice, your ears become keener, your arm muscles get more precise….
In the end, after lots of practice, you don’t think about your fingers and arms anymore, you just think about the music… It comes naturally… And now there is a set of dedicated neurons in your brain for playing the violin.
Like every muscle coordination activity practice is key!
Once I read a quote by a famous musician. He said something along the lines of; if I don’t practice for one day, nobody notices. If I don’t practice for a couple of days, I notice the difference. If I don’t practice for one week, the whole audience notices…
Think about that!

We start everything from scratch!

2009-09-29T11:10:00.000-07:00

After my first session Jan thinks about me long and hard, then she decides that we need to go back to the drawing board and start everything from scratch!
What? How is that even possible? Do I need to forget everything I have learned so far?
She concludes that right after the stroke I had paralysis of the left side of my speech apparatus. Therefore I needed to exaggerate my movements, the tongue, the cheeks, the jaw, in order to produce the correct sounds. She believes that as I have been working on my muscles for almost six months now, they are ready to produce the correct sounds without having to overextend, like normal people do. Because she says, as of now, my main problem is not my muscles anymore, my main problem is apraxia of speech.
According to the American Speech-Language-Hearing Association (ASHA)
Apraxia of speech is: “a motor speech disorder. It is caused by damage to the parts of the brain related to speaking.
People with apraxia of speech have trouble sequencing the sounds in syllables and words. The severity depends on the nature of the brain damage.
People with apraxia of speech know what words they want to say, but their brains have difficulty coordinating the muscle movements necessary to say those words. They may say something completely different, even made up words. For example, a person may try to say ‘kitchen,’ but it may come out ‘bipem’ or even ‘chicken.’ “ They may have “
· difficulty imitating speech sounds
· groping when trying to produce sounds
inconsistent errors
slow rate of speech
Apraxia can occur in conjunction with dysarthria (muscle weakness affecting speech production) or aphasia (language difficulties related to neurological damage)”
Jan believes that because I exaggerate my movements my muscles get stuck at a sound and I cannot move fluently from sound to sound.
If I can re-learn to produce sound with minimal muscle movement, she believes that everything else will fall into place, my speed, rhythm, and fluency.
Wow! It is a tall order! Besides, should I believe that?
On a certain level it makes sense, if you think about it. For example: the way I produce the “L” sound. I curve my tongue upwards inside my mouth, touch my two front incisors at the back, right at the gum line. That way I can pronounce “LLLLLLLLLLLLLLL” as long as I want. My tongue is stretched, almost cramped in this position, and it hurts after a while. But when I want to say Elisabeth, I have great difficulty, because after producing “L” in such a cramped position, I cannot move to the next sound, which involves planning the lip movement of “iiiiiiiiiiiiiiiiiii” It is difficult to plan the muscle movement of different muscles in the brain and then execute it by telling the muscles “Now do it!”
On the other hand, if I don’t move my weak muscles as much as I used to, won’t I be losing the strength in them? I mean, if you are weak, in order to get stronger muscles you have to lift weight, right? The more weight you lift, the stronger the muscles become, and it is easier for you to move them, right? Well, yes and no. In medicine, as my husband always tells me, you cannot always make deductions from one field to another field, empirical evidence rules. He believes medicine is more art than science, especially the therapy part. The above principle may be true as far as the muscles go, as for the brain, it must be a different story. My problem lies in the brain. There is nothing wrong with the muscles, if the brain could give the right commend. Even when they tell you have muscle weakness, is a manner of speaking only.
So, what do I have to lose? It makes partially sense, although in my hearth of hearths it is hard to believe.
We start.

My new therapist: Jan

2009-09-29T11:09:00.000-07:00

I meet with my new speech therapist, Jan. Immediately I am drawn to her. Such a gentle soul you haven’t seen. She evaluates me again. After going through the basic motions, she wants to know, what I want to get out of this therapy. Well, my goals haven’t changed much:
1) Speed
2) Recovering my old rhythm, tonality, fluency, inflection of speech.
3) Being able to initiate speech easily.
4) And doing all that without exhausting myself, like normal people do
For the moment being, we decide to focus our efforts on “Recovering my old rhythm, tonality, fluency, inflection of speech.” She makes me read a few paragraphs. Whenever I stumble upon a word I cannot read well, she says the word, then she says it again, I repeat, she says, I repeat, then we say it together in tandem, then I say it alone by myself, repeat after ten seconds, and again after thirty seconds.

The Change-over (Mehmet’s Parents)

2009-09-29T11:07:00.000-07:00

My parents in-law are coming. Mehmet is going to drive to New York to pick them up, a six hour journey to the JFK airport, and back. Not an easy thing considering they will spend almost ten hours prior to that in the air plane. But they preferred this option. There is no direct flight from Istanbul to Washington DC. All the other flights connect somewhere in Europe and my in-laws are over 70 years of age, they don’t want to run from terminal to terminal. The last time they came, they were almost missing the connection in Frankfurt, making a sprint like nothing to make it to the gate. As a result they wowed not to come again, but alas… So here we are. In Professor Dumbledore’s words “Once again I must too much of you…”
My mom and Mehmet’s parents are going to overlap for a couple of days. So it is easy for Mehmet to leave me in mom’s very capable hands to go to NY. I have not been left alone since the time of the stroke. We don’t know how safe I am yet, besides on and off I am having these panic attacks, which render me totally useless.
When my in-laws come, they are very happy to be with us. You see, this not the first time they come for an extended visit. After Kaan’s birth when I came down with the post partum depression they came and helped us for six months. They are extremely helpful people, they have this old fashioned sense of duty. If you ask anything of them they want to give their 150% to it. We also get along very well, from the very beginning their attitude was very favorable to our marriage, with time this has deepened into a mutual respect and love for each other. Now they are ready to help me as much as they can, to teach me how to talk again. They are almost giddy about it as far as I can tell.
There is also a funny dynamic involved. Up until this stroke I have always called them by their name. My mother in-law’s name is “Nermin”, my father in-law is “Sureyya”. I address them as “Nermin Hanim” “Sureyya Bey”. I am pretty sure that they always wanted me to call them “Mom” and “Dad” because they love me like their daughter. But up until now I just couldn’t bring myself to it, thinking that my own mom and dad could be offended. Oh well, now I have much difficulty in pronouncing their names, so there is no other choice but to call them “mom” and “dad” now. (“anne” and “baba” in Turkish).
There is a reason why the first baby words are simple, don’t you think? Simple sounds, simple words.
A couple of days later my mom arrives home, dad missed him so much!

Lost within: INR / PT levels, Vitamin K, Coumadin, Labs: solution we found

2009-09-29T10:15:00.000-07:00

Ever since I came home from the hospital, I have been on a lot of medication:
1) Blood thinning drugs (Coumadin)
2) Blood pressure lowering drugs
3) Cholesterol lowering drugs
4) + My previous anti depressants

Of course all of the above medications have interactions with one another.
My anti depressant drugs raise my blood pressure, which I have to bring down with blood pressure drugs, the blood pressure drugs in return effect my mood. But worst of all is Coumadin, it interacts with everything I eat.
You see, Warfarin (brand name Coumadin) according to National Institutes of Health,” is a medicine prescribed for people at increased risk of forming blood clots. Sometimes medical conditions can make blood clot too easily and quickly.
This could cause serious health problems because clots can block the flow of blood to
the heart or brain. Warfarin (Coumadin) can prevent harmful blood clots from forming.”

But, while taking Coumadin, you have to go to the lab and give blood to monitor your blood clotting levels continously.

Again according to N.I.H. “International Normalized Ratio (INR) and Prothrombin Time (PT) are laboratory test values obtained from measurements of the time it takes for a clot to form. Individuals at risk for developing blood clots take Coumadin to prolong the usual time it takes for a clot to form, resulting in a prolonged INR/PT. Doctors usually measure the INR / PT every month in patients taking Coumadin to make sure it stays in the desired range.”
But here is the catch: The food you eat can affect your blood clotting levels. Because: ”Blood clots are formed through a series of chemical reactions in your body. Vitamin K is essential for those reactions. Coumadin works by decreasing the activity of vitamin K;
lengthening the time it takes for a clot to form. To help Coumadin work effectively, it is important to keep your vitamin K intake as consistent as possible. “
So, you have to be careful around food such as:
Kale, Spinach, Turnip greens, Collards, Swiss chard, Parsley, Mustard greens…. The list goes on and on. You can eat them of course, but you have to be consistent. If you eat them, eat them every day in the same amount.

In the beginning it was weird to say the least. Mehmet would take me to the lab in the morning, I would give blood, the next day I would find out the INR / PT ratio results, according to which I would decide how much Vitamin K to take. Every second day I would be on my way to the lab, trying to catch up on yesterday’s results, as well as reading the same People magazine for days in a row in the waiting room.

After a while Mehmet started to research whether there is a better way. And he found it!

A do-it-yourself in-home test kit:

“The INRatio monitor is a diagnostic Point Of Care system that provides Prothrombin Time (PT) and International Normalized Ratio (INR) results using fresh capillary whole blood from a fingerstick.
The INRatio system reduces the headache of oral anticoagulation management, is easy to use, and features on-board quality controls with every test.”

The test kit is not cheap. But all in all, it might be cheaper than the lab-co-pays. For us the deciding factor was the real time ability to monitor today’s results with today’s medicine intake, and the convenience of not having to spend 1.5 hours in the lab every two days.
After three months we get this device home, monitor it for accuracy for one week (meaning we do the lab testing and in-home testing side by side for one week), and the make the switch over for good.

My Mom

2009-09-08T15:45:00.000-07:00

My mom is an interesting character. At almost seventy years of age, she is much younger than me in energy and in spirit, always running around like a teenager. She has very little silver hair, with a contemporary short hair cut and very stylish clothes which contribute to her youthful appearance. At the same time she is a rock: dependable, stable, wise, a balance between optimism and reality, a balance between smarts and emotion. When I think of mom the word “balance” pretty much occupies every nook and cranny of my thoughts.
Her family comes first. But she is connected to everyone around her with these invisible ties, like a weaver she weaves, pulling many colored threads from people she knows, a life-long pattern of relationships.
When she first heard about my stroke, she didn’t shout, she didn’t cry, she felt a sense of calm come over her and she asked totally logical questions, trying to understand what next steps are necessary. After consulting with my only brother, they the earliest flight they could find and came to my help. She says that all along she knew that I would be all right. She has a sixth sense like this…
At home there is my father, who in return shows every bit of his 71 years of age and on top many more. Because he has Parkinson’s Disease he needs help, minimal albeit significant, in order to survive. None of them complain, they accept the dependency as it is. One day will we also be like them? Or will we be selfish?
In this extended stay with us my mom continues to be the rock of the family. She takes me shopping, we go to farmer’s markets, she insists that Mehmet and me go out on a date, she knits a vest for me, and of course she does all the cooking and cleaning. My friends simply adore her. Never once does she say anything controversial to us, neither us to her. It is not easy to be stuck away from friends and the rest of the family for her, in a small condo with three demanding people. She not only manages that but she is very happy to share this adventure with us, seeing the progression I make, knowing that she is a part of it.
But, like all things nice this also is coming to an end. My father is at home with my brother and my sister in law; he needs my mother as well. Although he has given a blank check, my mom knows him too well to be fooled by it.
On 24th of December Mehmet’s parents will come to stay, and mom will fly home.

Sandy wants to get rid of me

2009-09-08T15:44:00.000-07:00

At least this is how it sounds to me. She says we have gone as far as we could go. The rest is up to me now. “You don’t need me anymore” she says. “Every patient one day opens her wings and flies from the nest.” I am so not ready for this. Whenever she brings up the subject I vehemently disagree. Honestly I am not ready:
1) I’m nowhere near my previous talking and reading speed.
2) Whenever I talk more than five minutes my whole mouth aches: my tongue, my jaw, my lips, my cheeks. It is a real strain.
3) When I first start to talk, I have difficulty in stringing something coherent together. After I have couple of sentences under my belt it is easier to talk. But I have initiation problems.
4) I am highly unemployable. Returning to my old line of work (Marketing Management) is out of question.
I have a million other reasons for continuing speech therapy. But Sandy is very stern. She doesn’t deal with incrementalism. When I came to her door I was mute. Now I am perfectly capable of talking, of getting across every thought I have however complex. She needs to spend her time on more severe cases.
I understand all of that. But I don’t know what to do. I need to continue therapy. At the end of the month Sandy makes another assessment. She tells me that she needs to graduate me. It is good bye time for us. From now on, I am to continue with the recommendations both from her and from Michigan.
It is unacceptable to both my husband and me. We request another audience with our Neurologist.
When we meet, she sees how much improvement I have made, but also how much more I have to go. So she writes another prescription for therapy and she is personally in search for another good therapist.
After a while she comes back to us and says she has a recommendation. The Suburban National Rehab Institute will take my case.

In both languages

2009-09-07T06:44:00.000-07:00

I am as Gung Ho about my recovery as possible. Everyday I dutifully repeat my exercises, on top I do more; in English and in Turkish.
Most of the people I meet ask me whether my recovery is faster in English or my mother tongue. Interestingly enough both languages walk hand in hand. When I make improvement in English, it transfers to Turkish. When I can pronounce “sh” sound I can pronounce it in both languages. When my speed increases in one language, it increases in the other. Which is interesting because it makes me ask thousands of questions about the make-up of the brain:
- Is language knowledge (words, syntax, semantics etc) stored somewhere else in the brain? Other than the Broca’s center (My damaged area)?
- Is Broca’s center responsible from language retrieval only? Regardless of what language it is?
- What is the relationship between language knowledge, and language retrieval?
Broca’s center responsible from language retrieval, must be separate from language knowledge. They sure must be separate and stored in different areas of the brain. In my case at least.
- Do we need words to think?
Even when my aphasia was severe, I was perfectly capable of thinking and reasoning.
- How do we think if there are no words associated with our thinking?
- Do we use concepts to think?
We must use concepts for the thinking process.
- But how do we form concepts? Is a concept a concept if there are no words to name it?
George Orwell’s book “1984” comes to mind. There Orwell describes how by eliminating words one can also eliminate entire concept. Well, I am sorry but Orwell didn’t have to deal with aphasia then (thank goodness!). Because it seems to me that we think in concepts. Thought process and language can be decoupled. By concept I mean a bundle of memorized sensory input integrated together. For example: I think of an orange colored, sweet-sour fruit, with a thick and bumpy skin. Whether I can retrieve the name “orange” or not doesn’t matter. It exists somewhere else in my brain, that bundle of information.
This is my hypothesis because, once I establish a neural connection between a concept and its retrieval mechanism, wherever that resides now, I have equal access to it in both languages. Once I re-establish the retrieval mechanism between the concept of “orange colored, sweet-sour fruit, with a thick and bumpy skin.” and the memory of words, I get equal access to the word “orange” and “portakal” at the same time with the same ease.
If you think about how we learn language:
We hear the word “orange” with our ears.
We see the fruit in its form.
We feel the skin.
We taste the sweetness and sourness.
We smell the flavor.
It is all sensory data, stored in memory, bundled together in one concept. The language portion, the word “orange” is also stored somewhere in a separate memory department. In my case, my memory of the word “orange” is intact. The missing part is the retrieval function. Here is an example of how it feels:
There is a city far away from sea. People of that city try to reach the harbor of another city which is near the sea. But the every highway and street between those two cities and the harbor itself have been destroyed.
If and when you can build the connection between those two cities and build another harbor you can gain your speech back little by little. It is perfectly possible. But you have to work on building the highways and the byways, and a harbor. Depending on how young you are and how much destruction you have experienced you have your work cut out for you. The more you work, the more progress you will make. You may not re-built the super duper 10 lane highway, you had before but you will have access to sea.

Driver’s license

2009-09-07T06:43:00.000-07:00

We come home towards evening of the second day. The next morning I have an appointment with Sandy my speech therapist, again. She gives me an assessment and decides that I don’t need to come more than two days a week. For the rest of the days I can practice on my own she says. I don’t feel ready to act without her guidance, her coaching though… Even the fact that our weekly hours have decreased in number frightens me. I may be physically there but emotionally I am far from ready.
Sandy asks me when I am going to get my driver’s license again. See, when I was discharged from the Suburban hospital, the doctor there revoked my driving rights. Not that he took my driver’s license away or anything, but he gave me a report that said I couldn’t drive, until I had a seizure free period past me and that I took the driving test again. I’m not afraid to drive, in fact I desperately long to drive again. Why? The reasons are multiple:
1) In the US you are stuck at home if you don’t drive.
2) It is utterly inconvenient for my family. I am the one who is mobile in our family. We have only one car, you see. I drive my son to school, to extracurricular activities, I procure food… Whenever there is any driving to do during the week, it used to be my job.
3) At the moment I am dependent on other people to be able to do my job as a home maker.
4) I want my freedom.
Maybe the last one is the most important one of all.
You see, I cannot imagine a life not driving a car. I like driving. I had a car since I was 18 (the legal age in Turkey). It is like a second nature. Mehmet on the other hand never lets me drive when I am with him. Husbands!
So I ask Sandy who I need to call to arrange for the exam and everything, I’m sooo ready.
It turns out that I have to take the exam at a special place, some type of a rehab center, one and a half hours away from where I live. I am exited, I study my facts…On a cold Monday morning, Mehmet drives me to the exam center. With some luck this will be the last time he needs to drive me anywhere. First the written exam on the computer, I pass it. Yippeee! Then the cognitive exam. I bet you have never heard of this before. They ask me problems like: Here is an intersection, 15 feet before the intersection there is a parked car, etc. ….. Given this situation, what would you do?
Then there is the physical exam taken to the extreme: they measure the time it takes me to brake (they flash a light I push a pedal with my foot, they measure the time in between.) They measure how much peripheral vision I have… They measure this and that and then what not before they put themselves into the car with me.
I must have passed these tests with flying colors, because I am invited to my car for the road test. To my surprise, we are not driving on a closed test facility, instead, we are off to the main street of Hagerstown. They want to see some driving in the city, in the suburbs and on the highway. It takes them a good one hour until they are through with everything.
Throughout this whole ordeal, Mehmet is with me, not to hold my hand, mind you, but to see with his own eyes whether he can trust me or not.
Especially because Kaan will be on the back seat, with me all the time.
I pass! I pass! I pass! The main examiner gives me a paper, stating I can drive again. Freedom, here I come!
Mehmet is not impressed at all. He says my driving is as it was before the stroke: Very Bad.

We are headed home

2009-08-28T05:57:00.000-07:00

It is November 2nd. We are going back. The beautiful colors of the fall have turned into wind gusts and chill. For a few days now, snow has been falling steadily. Smoke from wood burning fire places is pleasing to senses. For the last week things have been pretty lax at Umap, it is almost like the last days in school, nobody pays much attention to therapy sessions anymore. People are anxious to go home.
Ruth is flying with her third and final son to Florida to her boyfriend, Mike has his challenge cut out for him: they are moving to Tennessee to retire, they are building a house there and he is going to oversee the process, plenty of opportunity to talk! Mac is going to stay three more weeks because he made so much improvement at the last minute.
As for us we are going home, having a stop over in Pittsburg, our previous home town. We leave Ann Arbor on a clouded morning. On our way we stop at every science museum possible. In Toledo, in Pittsburg, in Delaware… All of them are geared towards children. Kaan is really having the time of his life!
Before I depart I receive a second evaluation. Here is the report. (the official was written later in November)

A few more tips

2009-08-22T14:01:00.000-07:00

Every speech therapist I see, recommends me talking in rhythm by patting a table or my own leg. Like this: re-com-mend: tap-tap-tap. You tap with each syllable.
When I pay much attention, it seems to work, but it is against my nature. I always confuse whether to tap my hand or focus on my mouth or what. I don’t feel comfortable with this method.
Instead I have another method: With multisyllable words I start by saying the last syllable and then the last two syllables, and the last three etc…
Congratulations: (kon-gra-chu-lei-shens)
shens
ei-shens
lei-shens
chu-lei-shens
ra-chu-lei-shens
gra-chu-lei-shens
kon-gra-chu-lei-shens
I find this method to be especially useful in Turkish, my mother tongue, because unlike English it is based on one word plus many suffixes.

A few tips

2009-08-20T06:25:00.000-07:00

While reading a word, I ask my therapist to write down, how it is actually pronounced, how it is sounded out. For example:
Alfa: al-fah
Familiar: fah-mil-yer
Lullaby: lahl – ah –bai
Egyptian: ɛ-gip-shɛn
Especially: ɛs-pɛh-shl-lee

Then I would cross out the original word, so that only the phonetic transcription would remain. If you think the phonetic letters further confuse you, then you must find out which letters make the most sense to you to replace sounds.
To me it felt like, while trying to read a text, I was fighting on two fronts:
1) translate the symbols on the page to sounds,
2) deal with the intricacies of English language, which are constantly changing from word to word.
So I would read a sentence or a small paragraph out loud. And if any words prove themselves problematic, then I would my therapist or my caregiver to sound it out for me. Then cross that word out and replace with the new version.
Of course after the session I would collect all these words, write them down on one side of the page, the transcriptions on the other side, like I have done above. Then I would repeat them until they became second nature.
You may find with the sight-words this may not be necessary, but especially with three or more syllabic words, I found it quite useful.
The second thing I found useful is working on prosody. In Wikipedia prosody is defined as: “the rhythm, stress, and intonation of connected speech (as opposed to smaller elements like syllables or words). Prosody may reflect various features of the speaker or the utterance: the emotional state of a speaker; whether an utterance is a statement, a question, or a command; whether the speaker is being ironic or sarcastic; emphasis, contrast, and focus; or other elements of language that may not be encoded by grammar or choice of vocabulary.”
Being unable to produce the rhythm, stress and intonation of connected speech is called (surprise, surprise…) aprosodia. Producing these nonverbal elements requires intact motor areas of the face, mouth, tongue, and throat. This area is associated with Brodmann areas 44 and 45 (Broca's area) of the left frontal lobe. Damage to areas 44/45 produces motor aprosodia, with the nonverbal elements of speech being disturbed (facial expression, tone, rhythm of voice).
So what do I do? There are exercises your therapist or your caregiver can work on with you. For example take a sentence: “it is a nice day.” You can say it in many different ways. First let the other person say it, and repeat after her with the same prosody. Sentence after sentence…
Question:
“Is it a nice day outside??”
“It is a wonderful day!”
“It is a nice day.”
The third thing I found useful:
While repeating after the person (therapist or caregiver) definitely, absolutely, positively look at her face. Let her say it a couple of times, observe the mouth very carefully, repeat after her, then say it together in tandem. When you are convinced you mastered the pronunciation, then say it twice, wait for 10 seconds, say it, wait for 30 seconds then say it again. Repeat this exercise until you have a complete mastery of the word so that it rolls of your tongue with ease.
The brain science behind this is as follows: Mirror neurons! (According to Wikipedia)
“A mirror neuron is a neuron that fires both when an animal acts and when the animal observes the same action performed by another animal (especially by another animal of the same species).[1] Thus, the neuron "mirrors" the behavior of another animal, as though the observer were itself acting. These neurons have been directly observed in primates, and are believed to exist in humans and other species including birds. In humans, brain activity consistent with mirror neurons has been found in the premotor cortex and the inferior parietal cortex.
Some scientists consider mirror neurons one of the most important findings of neuroscience in the last decade. Among them is V.S. Ramachandran, who believes they might be very important in imitation and language acquisition.[2] However, despite the popularity of this field, to date no plausible neural or computational models have been put forward to describe how mirror neuron activity supports cognitive functions such as imitation.[3]”
“In humans, functional MRI studies reported that areas homologous to the monkey mirror neuron system have been found in the inferior frontal cortex, close to Broca's area, one of the hypothesized language regions of the brain. This has led to suggestions that human language evolved from a gesture performance/understanding system implemented in mirror neurons. Mirror neurons have been said to have the potential to provide a mechanism for action understanding, imitation learning, and the simulation of other people's behaviour.”[
Well, the existence of mirror neurons in the brain still open for debate, but proven or not, I have seen it in action.

Here is a key to phonetic transcriptions:

A
A
ae /eɪ/[3]

B
Bee
/biː/

C
Cee
/siː/

D
Dee
/diː/

E
E
/iː/

F
ef (eff as a verb)
/ɛf/

G
gee
/dʒiː/

H
aitch
/eɪtʃ/

haitch
/heɪtʃ/

I
i
/aɪ/

J
jay
/dʒeɪ/

K
kay
/keɪ/

L
el
/ɛl/

M
em
/ɛm/

N
en
/ɛn/

O
o
/oʊ/

P
pee
/piː/

Q
kue
/kjuː/

R
ar
/ɑr/[4]

S
ess (spelled es- in compounds such es-hook)
/ɛs/

T
tee
/tiː/

U
u
/juː/

V
vee
/viː/

W
double-u
/ˈdʌbəljuː/ in careful speech[5]

X
ex
/ɛks/

Y
wy or wye
/waɪ/

Z
zed
/zɛd/

zee in American English
/ziː/

Further in Michigan

2009-08-18T06:33:00.001-07:00

Ruth has a boyfriend. Did I mention that Ruth was 84? She says her boyfriend calls her every night. Well, at first I thought that the boyfriend was like “Harvey” the imaginary rabbit in the James Stewart movie. It is very hard to picture Ruth talking on the phone each night and actually making sense, because she has trouble understanding the spoken word. But Ruth says she is very good on the phone.
Later on I confirmed this with one of her sons. At least we know that his name is not Harvey. She says he is 90 years old, a very good dancer with the right moves. Three years ago Ruth lost her husband of 50 odd years. Then she moved to a retirement community in Florida, where she made new friends, among which also a Boyfriend! She is clearly taken by him.
We (My family and I) also made friends with Max and George and their wives Joy and Joanne. George, who is by far the more handicapped person, seems the happier one among the two of them. Max, for some reason, has no patience it seems. Every time I try to communicate with him, he loses his temper. Today at lunch time I was trying to find out everybody’s favorite color. When I came to talk with Max I the conversation went as follows:
“Max, what is your favorite color?” – I write down the words, blue, green, red, yellow, purple, orange… He looks at me as if he doesn’t understand. I repeat “what is Your favorite color?” This time I point out to the different colors I see around. “Is it blue like my shirt? Red like Ruth’s sweater?” This time he is clearly confused. He shakes his head repeatedly. I don’t give up for I want to reach him, to communicate with him. So I run out to the art room and grab different colors of pencils. I think, if I stick to one type of material and the only difference is the color, I may be able to communicate the concept of ‘color’ to him. I run back, clearly proud of my thinking. When I approach Max again, he literally runs away from me, well because he is wheelchair bound, he wheels away. I approach him again, he wheels away again. O.K. I get it! He is frustrated and he doesn’t want to deal with me any more – I laugh and turn this into a game of “Tag”.
Later, I ask my counselor Marie, what was the problem with Max, what blocked him from understanding the concept of color. Marie said Max isn’t ready to understand higher order concepts yet, especially a concept like “favorite”, he may understand “color” but he may not understand “favorite” especially in relation with color. Although of course he knows what his favorite color is, it is blue, I have asked his wife Joy. His eyes are blue, he picks up blue shirts among many others… But he cannot decipher the words “what is your favorite color?”

Making progress

2009-08-14T05:36:00.000-07:00

Susan says I am making progress: My smile on the paralyzed side is widening. I like her. Because I like her, I am more comfortable with her and thus I can speak better. Isn’t that funny? I have also noticed this with Linda, the fellow patient: her speech, when she speaks to us or to a therapist is very incoherent, irrelevant. But a few times I saw her speak with her husband and she is much much much better. She can bring up more relevant words, more stringing them together…
I have noticed that, like stuttering, the more people here feel under stress, the worst their speech. The more they feel at ease, comfortable with the person they chat with the more fluent their speech. Also, the noisier the environment, the more people you add to the conversation, the worst it gets. Everything is better one a one to one conversation, in a quiet room with a trusted person.
I believe that before everything else, a therapists, or anybody for that reason, must earn the trust of the person she is helping. When people don’t feel the that constant anxiety with you, then you can let the best come out.
Susan lets me speak and speak, on subjects that matter to me. We have a real chat most of the time. She congratulates me when I say three syllable words like “information”. She also takes Ruth and me to field trips to nearby coffee shops and restaurants. We have to order by ourselves. As we are in Michigan, people are not so much accustomed to foreign accents, so our field trips start with some embarrassment: When I give my order from the menu, waiters have to ask again and again. When Ruth gives her order and the waiter repeats it, she doesn’t understand, but says yes to whatever he says; the Marx brothers duo in action.
On the vowel front there is no improvement, especially with long vowels like “I”, or “a” “oi”, which involves pronouncing “y”, but I am much better with the sounds: “sh”, “ch” now. From 8:30 until bedtime I have to speak. I become so tired, my jaw muscles ache, my tongue muscles ache, but most of all I’m drained at the end of the day because my brain works overtime, forming new synapses.

Kaan is having the time of his life:

2009-08-12T13:17:00.000-07:00

Kaan is having such a good time here. He likes going places. He likes being in that different environment of the hotel room. He likes going to the hotel lobby for breakfast, and for dinner. Most of all he likes the exercise room on top of the lobby. I don’t understand his fascination with big machines, but I reckon this is a male thing.
He sometimes comes to the UMAP building, of course everybody is in love with him. He is a cute boy, still a baby with big, beautiful brown eyes, they talk to him and indulge him in many ways. Also we discovered something new: a room full of toys! I didn’t know that, but UMAP has also a speech therapy program just for kids, for that reason, they keep a room full of toys. We go there quietly, and ask whether we can borrow some toys. That makes his day. The music teacher, Lynn, brought mom an article about what to do in Ann Arbor with small kids. Of special interest to us was: Fantasy Forest. It is an indoor play ground. On a rainy day Mehmet brought Kaan and mom to the Fantasy Forest they must have spent there six hours. He also enjoys going to restaurants very much. He sits on his high chair and orders from the menu, o.k. sometimes the menu is upside down, but still…
I guess just being all together with his dad and mom and grannie “on vacation” does it for him.
It was my job to read to him to sleep before all this happened. When I came back from the hospital, Mehmet took this over of course. We all lay in the same bed together, Mehmet would read and we would all listen. After two or three nights like this, my son didn’t want me in bed with him anymore, pushing me away with his little feet. But Mehmet told him with a certainty, that I am grateful even to this day, that this wasn’t acceptable. We either read all three of us together or not read at all.
Now that I can talk somewhat Mehmet encourages me to take that role again. So I accept the challenge. We borrow books from the UMAP therapists, and go at it. My favorite is Dr Seuss. Of course my speech sounds awful to the normal ear. But Kaan’s little ears it is sweet music, he doesn’t care. And I enjoy the process so much, it is a real blessing to be able to read to my little man again, that I read to him for half an hour every night since then.

End of second week in Michigan

2009-03-11T09:35:00.000-07:00

I am looking at the mirror. Right after my stroke, while at the hospital I didn’t want to look at the mirror at all, until I came home. And then I stole only quick peaks, on a need to know basis. Why? I didn’t know how to come to terms with my new look. You see, right half of my face is paralyzed. I cannot smile with my right half, on top I have a droop. So, when I smile or laugh, it is only a half smile, the other side just stays there, doing nothing. Of course that is very peculiar. I remember, only two months ago I was concerned my face getting wrinkles. Now I look at the mirror and think that now my face isn’t going to get any more wrinkles at all. When I reach my 70ies my face will look like a prune on one side, and like a baby on the other side, can you believe it? I smile at that thought with half of my face.

I am so lucky to be alive that I don’t dwell on that thought too much. Now my goal is to speak, period, everything else is just sidetracking.

Concentrate on how to produce the “sh” sound:
Sharp
Sharp knife
Use a sharp knife.

Ship
On the ship
I will not go on the ship.

Shy
Very shy
My niece is very shy.

Shoot
Shoot the picture
Aim the camera and shoot the picture.

I also have to work on my vowels. As I said multiple times I can easily see and try to reproduce the frontal sounds, but how the mouth cavity and tongue have to be positioned inside the mouth is still a mystery. I cannot differentiate between short vowels and long vowels. Let’s take “e” sound, it can be short as in “it”, or it can be long as in “each” or short as in “egg”. Now how do I position my tongue (half of it not working) inside my mouth to say that. My counselor Marie also has a hard time because she doesn’t know, whether it is my Turkish accent interfering, or whether it is my disability. Finally I bring in Mehmet, and Marie drills him on my exercises to differentiate between both. We decide that Turkish accent substitutes “w” with “v”, “th” with “d” but this is about it. I shall be able to produce every vowel. So I shall continue working than.
Eye odd it each
Ice on in ear
Ike ox ink eat
Ion obsess inch ease
Irate oblong ill eager
Ivy oxford imp either
Irony omelet ignore equalize
Ideology October imitation eagleeyed
Isolation observer ingredient eavesdropping

October 2, 2006

2009-03-09T11:33:00.000-07:00

Today, I learned about Mike’s stroke experience. We were having a group session: Mike, Linda and me. Everyone was trying to tell their war stories. Mike’s was so funny I almost fell out of my chair laughing. This is how the story goes:
Although Mike is only 49, he has a 19 year old son. One beautiful spring day Mike, Mike Jr, and Mike’s father go golfing. They golf for three hours, they complete the 18 holes, they go to the parking lot and say good bye to each other. Just as Mike is waving bye to his son, he notices that he cannot lower his hand. The hand is stuck in a permanent waving motion, and he is saying good bye over and over again…
Thank god his son notices that something is not quite right with dad, and they bring him to the hospital.
I imagine Mike still stuck in the waving motion, as they carry him like statue into the ambulance, like they would in slapstick comedies. I have never heard of stroke leading to one not being able to stop doing something. What a funny way to go. Mike also laughs at this.
Of course, not everyone’s story is amusing. Some patients are bitter. Take Linda for example. She is an outstanding ob/gyn, or rather she was, before the stroke. She was always fit, busy, determined, on target, on time… One day while she is on the treadmill, running and then “Bamm!” it happens. The peculiar thing about us patients is that nobody among us is overweight, on the contrary, quite slim, relatively in good health… It seems that somebody has thrown us a curveball out of nowhere. About Linda, the most amazing thing is that after her stroke her friends shunned her. Let alone helping her, they gave her the cold shoulder. I wonder why this happened. What leads a person not to help another person in need. I simply cannot grasp this notion.
Ruth among us is the most colorful character. She is 84, as I said. But if you look at her from behind she looks 18; she has a ballet dancer’s posture; she moves easily and with grace. She is vivacious, ready to smile all the time. Ruth tells me she has three sons, all living in different parts of the country, she herself lives in a retirement community in Sarasota Florida. One of her sons flies to Michigan every weekend, not to leave their mom alone. Too bad she doesn’t live in our hotel, it would be fun to have her every day. She is so talkative, although of course she doesn’t understand much of what’s being said to her, and doesn’t know what is coming out of her mouth. But aren’t we all having tangential conversations most of the time.

End of September end of 1st week at UMAP, 2006

2009-03-09T11:32:00.000-07:00

I keep working, doing the exercises they give, and do some more on top. So far I didn’t notice any difference in my speech. My tutors say that you begin to see a difference towards week three or four. The classes are held in each speech therapists own office. Some of them don’t have any permanent offices then we go to a room, some of the rooms are so tiny that you can only fit in one desk and two chairs, and nothing else. I have also discovered two day rooms where you can go between the classes and take a nap. The day rooms are very funny: There is a bed, quite plush, with cushy pillows, a quilt, and several afgans as cover. Plus there is an easy chair, a night stand with a cozy lamp on top. The whole atmosphere is set like a bed and breakfast rather than a school or a clinic room. I find it very soothing, familiar.

On the home front all is well. Kaan is having such a good time. The Hands On museum was such a success. Now for three days in a row, Kaan and mom have been going there. After they have their breakfast, Mehmet leaves them at museum’s door, and three to four hours later he picks them up.

The museum is a stand alone building at the very heart of Ann Arbor. Completely devoted to children, It won awards for best Local Museum and Best Place for Kids under 12; has more than 250 interactive exhibits with subjects ranging from physics to health to nature to mathematics and beyond. The museum is constructed in such a fashion so it can provide an informal environment for children to roam freely and get their “Hands On” everything. Among many exhibits are: whisper dishes, tornado, Building in a Building exhibit. Facts about the human body, full-size ambulance, X-rays, a preschool area for children 4 years old and younger where Kaan can splash in water tables, dress up like fire fighter and play on the child-size fire engine. There is a section about experiment with simple machines, how traffic lights and the Internet work. There is a section about light and optics by playing the stringless Laser Harp or catching your shadow on the wall. The science of television, telecommunications and the concepts behind cutting edge technology. I can easily see why Kaan gets so exited.
.

I guess Kaan is learning much more here than he would learn at pre-school. Of course mom is trying to keep up with him running from experiment to experiment, the energy level of a three year old and a 70 year old don’t match and she is exhausted after three hours like any adult would. Good thing that we live in a hotel where everything is done for us, so that mom can focus on taking care of Kaan, Mehmet can focus on his work, and I can focus on my work.

September Wednesday 29, 2006

2009-03-09T07:30:00.000-07:00

I go through morning routine: Shower, breakfast, speech exercises and then off to school. Today Kaan, Mehmet and Mom will go the “Hands on” science museum for Kids. Mehmet has found out about this Museum on line. He decided to get a family membership, which costs about $ 65, for an entire year’s access to science Museums across the USA. It seems like a great deal.

I, on the other hand, will go to school and learn how to speak again. I am so ready for this. In fact I am enjoying this Back to School thing, without having any responsibility. I don’t have to be a wife, a mom, a homemaker anymore; my only responsibility is to learn to speak intelligibly.

Today’s exercises include the sounds “sh” and “ch” and “j”

Exercises
“ch” with increasing syllable count
Check, Chair, Choose, Cheese, Change, Choke, Cheap, Char, Chance, Chop, Choice, Chill, Chew, Cheek
Cheerful, Chaplain, Chuckle, Charter, Children,Chubby, Churning, Cherry, Chicken, Charming, China, Charcoal, Chimney, Chapter, Chummy

Champion, Chocolate, Chicory, Chancellor, Chiseller, Chatterbox, Chastisement, Chargeable, Challenging, Childishness, Chariot, Channelling, charity, Changeable, Chunkier
“ch” in a sentence:
Chilly days are good for a hot bowl of chili.
Please do not change the channel again!
That chain around your neck looks chunky.
The children fed cheese to the chipmunk.
And so on

“ch” within paragraph.
The children were looking for an adventure as they took their picnic lunch to a nearby orchard. The temperature was warm for March, and many creatures out from their hiding places. Chad was the first to spot a woodchuck stretched out under a birch tree. Gretchen put her sandwich aside to watch a chickadee and gold finch which were perched in a nearby branch of peach tree…

In the afternoon it is my lab time. I’m introduced to several software programs: Parrot and Bungalow among them.*
*I have searched since then, the following softwares are available on the market as of March 09
* Aphasia: React2 , Aphasia Tutor 1, Aphasia Tutor 2, Numbers 'N Sounds, Sights 'N Sounds, Synonyms, Antonyms and Homonyms, Freeform, Lexion, Lexilogic, Step by Step, SentenceShaper.
Apraxia: Sword, The Source
Articulation/speech production: React2, Numbers 'N Sounds: Sights 'N Sounds:, lingWAVES TheraVox: Speech pacer, Speech Sounds on Cue, Speech prism

some words of wisdom

2009-03-02T07:47:00.000-08:00

When you have a stroke several things happen:

1) Of course you had a brush with death. This has a profound effect no matter what. After the brush with death, everything that happens to any survivor happens. The feeling of being grateful for every day; love of life even stronger than before…

2) But there are other states of mind that, I believe, are particular to stroke:
a. Understanding for everyone. Stroke means part of your brain is damaged. According to the damaged area you have lost something that you never ever imagined was possible to lose. Maybe your capacity to understand, or to make sense, or to control yourself. It may be as specific as to being able to recognize faces. Because brain is still a black box to us we don’t know what is inside. For example it is obvious that if a person loses her eyes due to an injury, she cannot see. If a person has hysterectomy she cannot ovulate anymore. So, the innerworkings of human body are very much known, except the brain. It is still mysterious why a person suddenly acts differently. You cannot open the brain and look inside, to figure out the reason why. So we attach some kind of mystical, magical, mysterious explanations to it. We call it character sometimes, or the will power. Except it is nothing more than brain chemistry. Lucky for us, there are more tools available to mental health science than before, like better drugs and fMRI. Long story short, you, as a stroke survivor, suddenly gain valuable insight to the innerworkings of the brain. Because, your experience changes as you recover. And you understand why certain people can or cannot do certain things. In my case, for example, as a result to the damage to temporal lob region, I lost my ability to grasp the concept of Math. Over the course of four weeks I seem to regain it. But I now understand that if a child is genetically not well developed in that brain region, it is going to be harder for him to master math in school. And we would brand him as:”He is a bit stupid, he doesn’t get it” I now have an understanding for the genetic underpinnings of why a person can or cannot exhibit certain behaviors. So I say to my self: It is not intentional, it is what it is.

b. You take nothing too serious. You laugh at yourself. Well, once you forget what to do when you sit down to pee, it is not easy to take yourself too seriously. You notice that people around you can take care of themselves, thank you very much. You were always thinking that without you, the world will come to an end. What you notice is that, without you, the world continues to turn, people around you rise to the occasion and quite often exceed your expectations. You are relieved of the burdens of everyday life, because now other people do it. Yes it might not be the way, how you would do it. But often you are surprised how well their solutions are. You learn to trust other people. You learn how to let go.

c. You grow as a result of the process. Most of the people, including myself, feel too proud to ask for help. This is especially true for United States where doing-it-your-self is very much engrained in people. But when you cannot do the things you need to do, like getting up, or depending on others to utter you words, you have no choice but ask for help. It is a very very humbling experience. Swallowing your pride, letting go of your ego is an outcome of this process. The earlier you can do it, the better. We all like to give people around us, but it is not easy to be on the receiving end. You feel weak, sometimes even humiliated. But again, it is all in your head, how we attach meaning to behavior and words is up to us. In the end you understand that it doesn’t matter, nothing matters, in fact, you become humbler and wiser.

September Tuesday 28, 2006

2009-02-28T18:22:00.000-08:00

I wake up early in the morning, shower, dress up, and leave the room without waking anybody. Then I go to the breakfast area to see what is cooking. Wonderful: bake-it-yourself waffles, sausages, eggs, potatoes, oatmeal, yogurt, you name it, it is there, even cooked rice and miso soup! After I finish my meal, I try to find a corner to practice my speech. The dining area is too full and loud; outside it is too cold; finally I go to the gym area which is totally empty. I pull the big binder out and repeat some one syllable words. Until I notice that it is 8:30 and the bus will be leaving. It is a mini-bus for maybe 15 people, but there is only two other people waiting: Mike and his wife Rose. Mike is the aphasia patient, he is 49 years old, his wife will be staying with him for only one month, then he will be on his own. Mike’s situation is a bit more severe than me. He has trouble finding words, but as far as I can see has no trouble pronouncing them. He also has some weakness on his right side, as I understand from the stretching movements he does from time to time. Apart from that there is no indication that he is handicapped in any way. Rose is quite talkative, she talks for the 30 min trip long, from this and that…
At the center, Debbie gives us our weekly schedules. According to my schedule I have: Marie, Ann and X for my one on one therapies, Suzanne for my group therapy, Lynn for Music therapy and computer lab for that week.
The next session I have is group therapy. On the schedule is also indicated where the session is going to take place. So I go to room 202. In room 202 I find one other person: Ruth. The wonderful Ruth! To me it doesn’t seem like she is suffering from anything really. She is perfectly talkative, has all the limbs going for her, in fact, at 84 she looks-and acts- more energetic than me. I see that she has a hearing aid, and therefore cannot hear people well. When Susanne comes and we go deeper into discussion, I understand. Ruth suffers from a damage to the Wernicke’s area to the brain.
According to Wikipedia: “Wernicke's area is located in the left hemisphere, as the left hemisphere is specialized for language skills. Occlusion of the middle cerebral artery in a stroke can affect the proper functioning of this area. Damage to this area could cause a type of aphasia that is now called Wernicke's aphasia or receptive aphasia. This condition results in a major impairment of language comprehension, and in speech that has a natural-sounding rhythm and a relatively normal syntax but is largely meaningless (a condition sometimes called fluent or jargon aphasia). It also has connections to the primary auditory cortex, evidence for its role in the comprehension of the spoken words.”
Therefore Ruth has hard times attaching meaning to my speech, or anybody’s speech for that reason. Furthermore, when she speaks she substitutes random words in an inconsistent fashion. And because she doesn’t understand what she hears (part to the brain damage, part to loss of hearing), she is in a double whammy. But Ruth is the funniest person ever. She has a great sense of humor. For example she means to say: “It is raining cats and dogs this morning!” Instead she says: “It is raining great potatoes this morning!” When we tell her what she just said (in fact write it down for her) she laughs out loud, very amused. After just one session with her we understand that we are going to become best friends, something like the Marx Brothers. Me excellent in understanding but very lousy in speaking, Ruth excellent in speaking but lousy understanding: Deaf leading the blind.

We are heading off to Michigan

2009-02-26T13:52:00.000-08:00

The 26th of September has come, and we are heading off to Michigan, Ann Arbor. Mehmet has made all the arrangements in advance; the University of Michigan Aphasia Program, place reserved, advance paid, check; hotel reserved, check; his remote work permission from the office, check; things to do with Kaan while I am of in rehab, check; things to for my mom while I am of in rehab, check. My husband is so thoughtful; he doesn’t forget any single detail.
So on that morning, we load our compact car as much as possible, give the key for watering the plants to friends, and take off. It is an eight hour drive. Of course we have a three year old in the car; we need to take it easy. But the drive is uneventful, which is good. Kaan is not yet in the habit of asking the dreaded question “Are we there yet?”. Perhaps that starts later it life. He is happy as a lark. We have informed the preschool that he is taking off for 6 weeks. This is a vacation, an adventure for him. Every two hours we are at a rest stop, he is allowed to eat junk food.
At seven or eight in the evening we arrive at our hotel: Residence Inn by Marriott Ann Arbor.
The letter from the manager says:

“Dear Mr. Kayaalp:

Thank you for your interest in our hotel to accommodate you and your family while attending Session G of the University of Michigan Aphasia Program. I have attached the brochure we have created specifically for the Program that provides a general overview of our hotel with diagrams of our 4 different room types. I have also included our September evening social calendar.

We also have pictures of our hotel at our website: www.residenceinnannarbor.com
Please let me know what questions you may have. The Residence Inn by Marriott is one of Marriott's extended stay brands that specifically caters to guest who are away from home for 5 or more nights. I know you and your family would be very comfortable with us.

Warm Regards”

Mehmet informs us that it is an extended stay; so we will have a “penthouse suit”, with our own kitchen and everything. Mom is going to sleep on the second floor. Kaan is going to sleep with us. Mehmet has bought him an airbed online, just his size, very cute, with an polar sheet that has moon and stars on it.
At the lobby, we are informed that there is a meeting at the dining room going on, all University of Michigan Aphasia program students like me, if I like, I can join them. I have a quick peek from the door.

I see them and it hits me like slap in the face: Those are men over fifty, with white hair, in wheel chairs, cannot speak at all… It reminds me of the nursing homes we see on TV, of end of life.
My first feeling is rejection. I reject that I have anything in common with. They are crippled. I am not.
The truth is, up until then, I was quite upbeat, I didn’t see myself as disabled at all. In my mind, I was as intact, as I used to be before the stroke. All my loved ones also treated me like nothing was the matter. My condition, if you call it a condition, was only temporary. I was going to be my own self back within a year.
Looking at the patients in the dining room places a mirror in front of me. If I am in the same category with them, I am one of them. I am “disabled”. It means I have to come to terms with it, accept the new me and learn to deal with it. Still, my predominant feeling is denial. I don’t join them, instead, I go tell my family to go to our room.

The room is really cozy. Two levels, so that my mom can have a little privacy, and Kaan has different nooks and crannies to hide, run up and down the stairs. Even the fireplace is real, you can burn real wood in there. After we settle down, Mehmet goes to find a grocery store to fill the fridge. We are going to eat dinner in our room, to reduce at least the food bill. This trip, $30 000 including hotel and therapy, is going to be the most expensive “vacation” of our lifetime. Just thinking about it, you don’t spend so much if you take a trip around the world with your whole family, or some exotic vacation for weeks… This is surreal. But we are here, and we decide to make the best of our time while we are here.
The weather is warm, although it is the end of September, the autumn chill hasn’t yet descended upon Ann Arbor. None of us has ever been in Ann Arbor. Between 1997 and 2001 I have been a lot to Michigan on business, commuting from Pittsburg on plain, at least three days a week, every week; but I have always been to Grand Rapids MI, and visiting stores around the region on business, still never to Ann Arbor. From experience I know that Michigan is flat land, that there is a lot of Dutch and Scandinavian ancestry among the inhabitants, but beyond that it is hard for me to see it with a tourist’s spectacles. I am pretty determined that I will stay at the hotel, go to school (rehab), come back, work on my homework pretty hard, and repeat this every day. I am pretty motivated. It doesn’t even occur to me that it can be any other way, the work ethic in me, which tells me ‘work is work’ and ‘life is life’ and both of them don’t mix, is rather strong.
Besides the program looks so intensive I doubt that I will have any breathing room at all. So, our little adventure begins.
September Monday 27, 2006
We drive to 1111 East Catherine Street. The center is in a small brick building, to my surprise, right down in the basement. It doesn’t seem to be like I imagined, especially because it is a University Hospital and all. You know, in movies, when the lead character is somehow injured, they bring her to this super scientific facility, with white coats running around, lots of labs, something to give the visual impression of a sci-fi atmosphere, ok, at least some brushed steel, gray and white in the background. Well it is nothing like that. After climbing down two flights of stairs of the brick building we come to the reception area. Lisa and Debbie greet us with very warm smiles. While Mehmet is off to see the treasurer (about how we will pay the bill) I am introduced to Marie Evans, my lead counselor. She takes my discharge papers, that Sandy has written, yet, she puts me again through assessment:
Understanding the oral word, the written word, describing what I see, and yes there is the Boston Diagnostic Cookie picture again, finding words, pronunciation etc. Then I see a battery of therapists one by one, who also assess me on different abilities. Marie finishes up with getting me on video as well as on audio tape.
The committee of speech therapists will meet up later to discuss what kind of therapy I will need, and give me my schedule in the coming days. For every client UMAP handles, (and we are called clients, not patients), they are trying to customize the program as much as possible. Most of the therapists have a specialty, and they try to maximize the match between clients and therapists.
The committee meets, the verdict is as follows:
“Mrs Turhan’s speech was characterized by the inconsistent phonemic substitutions and deletions that are typical of verbal apraxia, as well as the distortions that are more typical of dysarthria. Verbal apraxia is difficulty sequencing, or organizing, speech sounds into meaningful words. It is also characterized by difficulty initiating or starting speech independently. Dysarthria is neuromuscular weakness resulting from stroke or degenerative disease that, among other things, results in imprecise, less intellible speech. Mrs Turhan spoke with adequate volume but decreased speed. She had difficulty with “ch”,”sh”,”j” s blends, “l” and “r” colored vowels, “f”,”v”,”kw” or “qu”, “ing” and the sequencing of back to front consonants. The following substitutions were noted: r/l, s/sh, sh/ch, ink/ing, t/d. Mrs Turhan syllabilified words easily and independently. Was often able to self correct, and did self monitor her speech part of the time. She had pretty good sound/symbol associations, which she also used for spelling. Some of the vowel and consonant associations were probably due to the fact that English is a second language for her.
On the Apraxia Battery for Adults-Second edition (ABA-2), Mrs Turhan’s scores on the increasing word length, repeated trials and Polysyllabic Words subtests indicated mild to moderate apraxia. There was no evidence of limb apraxia. The three intelligibility subtests of the Frenchray Assesment of Dysathria were also administered. Mrs. Turhan scored 30% intelligible on the words, repetition subtests. 60% intelligible on the Sentences/Description subtests and 45% - 50% intelligible on a sentence-sentence basis in conversational speech. These scores indicate a moderate to severe dysathria.” (see attached)
Apart from the above, the conclusion was that I was able to express what I think either verbally or gesturing or pointing etc; that I was able to understand what I read or hear and finally that I was able to write what I thought.
For somebody who was earning her living via persuading others, saying “vael”, while pointing to water, if I wanted some refreshment doesn’t seem like much to you. You see, I was an MBA, in Brand Management for a Fortune 100 company, before I got pregnant. But to a stroke survivor, being able to bring 2 and 2 together, i.e. the concept water and utter the word “water” or something similar to that is great achievement.
At lunch, all of the students meet at the lunch room with their caregivers, we order lunch from an outside company. Later I decide to bring lunch from home.

Discharged from Therapy at the Advantist Hospital

2009-02-26T13:49:00.000-08:00

When I tell Sandy, my speech therapist that we have signed up for the program in Michigan, she has difficulty understanding why. Why do we go there, while we are making such good progress here; pay a lot money on top. She sees this move as totally unnecessary. I feel that she is annoyed a bit. I feel as if I am betraying her trust, or rather, that I don’t trust her enough. But the decision has been made, advance paid…
The truth is, there is no better time to go to Michigan, if we are going to do it, we better do it earlier than later. Because we are running against time; I am told over and over again: the first three months are crucial in stroke recovery. In Michigan there is going to be more of everything: more therapy, more occasion to talk, more therapists, more therapy styles…
The more my brain is exposed to things the better. Besides, I feel ready. I have visualized the trip in my mind, being away from my home, from my familiar surroundings, and it is OK.
So, Sandy discharges me, she makes an assessment again. After 4 weeks of treatment, here is what the discharge summary says:
“Overall Patient progressed from severe expressive communication deficits (apraxia, dysarthria, aphasia) and occasional receptive language deficits to mild/moderate dysarthrial appraxia and occasional difficulty in spelling. Functionally she progressed from ‘0’ verbal expression to communicating at the conversational level. The only residual aphasia is in spelling.”

My son and my husband

2009-02-11T09:24:00.001-08:00

My son is only three years old. His name is Kaan, as you know. Up until now he was truly a mama’s boy, most of the baby’s are. He is depends on me from morning till sleep time for food, for sleep, for things he cannot do himself but desperately tries to; I’m his audience, his playmate, his teacher… When he cries he cries for mama, when he has a booboo, it doesn’t go away unless I kiss it. His dad is also very very involved, but it is not the same as mom.
Then suddenly “Pooff!”. His mom disappeared! She is not physically there for him anymore. She cannot provide. He tries to talk with her, no, can’t do; he wants her to carry him; nope, can’t do; he wants her to read to him as usual, or sing to him, no, no and no again. She sleeps the whole day, when she doesn’t sleep she has to work. Both Mehmet and my mom tell him over and over again that: mom is temporarily sick, but she will be better. She has lost her speech; she has to learn how to speak again; she has to work hard but she will speak again. She sleeps a lot because she needs to recover.
He understands all that, but because young kids live in the moment, he pushes hard for me to return back to normal. We had a sleep routine like many families: he has dinner, he takes a bath, then I read to him in bed. Now because I cannot read anymore we all lie down on his bed, Mehmet reads, he and I listen. After two weeks of this, he doesn’t want me in the room again. When I try to lie down, he pushes me out of the bed, he clings to his dad.
Of course, secretly I cry in the bathroom. But we do not give in. Mehmet tells him very sternly: “If mom goes out of bed, I go too! She is going to stay here with us and listen. Over time she will read you stories again, like she used to.” It is very hard on the children because they do not understand completely, it is impossible. It is hard on me to, my baby rejecting me. But my husband is on my side like a rock, we are in this together. Besides, I can assure you, years later, Kaan will not remember any of these. He will only remember the very last ‘me’, precisely because he lives in the moment.

Slowly I watch, how over these three weeks my son’s relationship with his father evolves, how it grows into a bourgeoning relationship that is more and more layered. Now Mehmet is the playmate, the reader, the explain it all person, booboo healer… I observe how much fun they have together, how much Mehmet cares about Kaan’s feeding, clothing, learning… I always knew that Mehmet loves Kaan beyond comprehension, but seeing the bonding happening between them…

You cannot imagine how much relieve a mom can feel when she knows her loved ones are in good hands (in this case in each other’s hands).I take so much comfort from the fact that they will be fine; no matter what happens to me, they will be fine. They will survive and prosper after I am gone. Don’t misunderstand me though. I am not going anywhere. I too will survive and prosper, no matter what. The constant worrying, the constant anxiety accompanying every parent disappears over time. At a time where I need to concentrate on getting better, this relief comes like a soothing ointment for my soul.

Drawing

2009-02-10T18:18:00.000-08:00

Since the days at the hospital, I didn’t try to draw or paint. I am a visual person. When I sit down to explain something to another person, after a few attempts I usually I find myself getting out a pen and paper, drawing the the thing. It may be a flowchart, a picture, a list, partially to clear my own mind and partially to for the other party to haven easier time to decode. Expressing myself visually is very important to me, almost as important as writing. That said, although it is such an important part, I do not work on it.

My priority list is:
1) Talking
2) Talking
3) Talking
4) Writing
In that order.

Besides, like with the computer, I am afraid broaching that subject again, what if I keep disappointing myself. Then suddenly it happens. On the Third week after the stroke, as I am waiting for my husband, to pick me up from the lobby of the Adventist Rehab Hospital, I pick up a paper and pencil and begin to draw, just like that…
I draw one picture.

I am so so so happy! I can jump up and down!, I want to shout to the whole wide world! I can draw again! I want to do summersaults! Of course like any self respecting person I don’t do them- besides I don’t even know how. Instead, I draw another picture… As my husband comes, I am on my third picture already. I tell him the news. He says, wonderful! But I can tell that he has other things in his mind. At home I tell my mother. She is absolutely, positively impressed by the news. Because she knows my life, how important visual art was for me ever since I was a child. She also wants to share the news and tells it anyone who can listen. In the afternoon, my friend Zeynep comes for more speech therapy. My mom tells her that now I can draw beautiful pictures. Zeynep is utterly shocked. From reading internet stories about aphasia – since my stroke – she has found out that, strange things happen to people with aphasia. Like the one woman, who suddenly started to speak in a foreign language, or people who started to speak in a foreign accent. She thinks that it has also happened to me; that I can draw and paint all of a sudden, with no precedence.When we understand what she means, we all fall down with laughter. No, no, no parapsychology here, just normal progression after brain injury. Like addition and subtraction it all comes back to me gradually.

international friends

2009-02-05T10:00:00.000-08:00

In 2003 we moved to the Metropolitan Washington DC area, due to my husband’s relocation to National Institutes of Health. At that time we bought a condo in Bethesda, very close to NIH. When my son was close to 1 year old, I met a German lady, Ursula, who also had young kids. She introduced me to International Woman’s Group (IWG); a group mostly comprised of foreign mothers of toddlers and babies. A great majority of them came to DC because their husbands work at NIH or at the World Bank, for 2-3 years. The women are usually in their 30s, most of them have graduate or Postgraduate degrees, but are not allowed to work in the US due to their visa. So they are using the time here to have babies, and look after them. It is a very colorful group, with everybody to offer a lot of things. So I joined them, made good friends with quite a few. As everybody was raising their kids far away from home, we couldn’t rely on anybody but ourselves. We supported each other, we grew together as we learned the art of being a “mom”. After 1.5 years I decided to give back to this community by volunteering to be the president. I was one year past into my presidency, when I had the stroke.

For them it was quite a shock. For me it was a blessing, I was surrounded by love of friends.

After they learned of my demise, this is the e-mail message my two vice presidents send out to IWG community:

“Dear Board,
I am very sorry to let you know that Banu was taken seriously ill on Sunday night and is in hospital. She has had a stroke and is still in intensive care. From Mehmet I have learnt that her vital signs are good, she has no paralysis, she is conscious and seems to understand what is going on around her but is unable to respond verbally or in writing. Her mother is here, and she and Mehmet sound very calm and positive considering. Once over the shock of hearing such dreadful news, I imagine that you, like me, would all like to send your well wishes and offers of support and help. Having spoken to her family, I ask you, however, to hold off contacting her directly until I hear from Mehmet that they are ready for such attention. We do not want to overwhelm them at such a delicate and worrying time, however good our intentions. In the meantime, Zeyno and Naciye will pass on our messages and have promised keep us informed of any developments. Now, as the Board, I would like your input on how to proceed with informing the rest of IWG. And, indeed I would appreciate your thoughts on how much to tell the group at this point when we ourselves we know so little. My first reaction is to vote to avoid too much detail concerning her condition but let the group know that she is ill and Manuela and I will be taking over her role for now. As for the day-to-day running of IWG, I have spoken to Manuela and we will do our best to fit Banu's very roomy shoes. Everything else can wait until we have more news of our friend and leader. I trust that you all will treat keep this news in confidence until we decide together what should be done.

Anjali (and Manuela)”

So, they set out to give regular updates about my condition to each other:

“Hi!
Banu continues to improve. Besides receiving speech therapy, the newly started exersizes in writing are also going well. This Sunday she will be leaving the hospital (Suburban Hospital - 8600 Old Georgetown Rd, Bethesda, MD 20814, room #: 3201) and going home. Also this Monday she will be starting a program of speech therapy, 5 days a week, 1 hour a day Adventist Rehabilitation Hospital of Maryland'da (9909 Medical Center Drive,Rockville, MD 20850). Within two weeks they are thinking about enrolling in a program of speech therapy offered by the University of Michigan Aphasia Program-UMAP.
Banu and Mehmet are fighting this disease as hard as they can. They say that the support of friends makes a huge difference. But they are continuing their fight with limited information and in line with their current speech therapist’s advice. Therefore they want to get their hands on any information that is PROVEN successful. Also because they have to act fast and they have no access to information while at the hospital, they need your help in terms of forwarding them everything you can find about similar cases of recovery via e-mail. In order to help you to get accustomed with Banu’s condition please read the below quotation:
"Apraxia is a motor disorder in which volitional or voluntary movement is impaired without muscle weakness. The ability to select and sequence movements is impaired. The errors in apraxic speech are unpredictable. Apraxic speakers "grope" for the correct word; they may make several attempts at a word before they get it right. Apraxia that happens as a result of a incident causing brain damage is said to be "acquired". This can result from stroke, head injury, brain tumours, toxins, or infections. It can so severe that the individual is unable to initiate speech"."Aphasia is an impairment of language that affects the comprehension and production of spoken language and written words. Aphasia usually affects other means of communicating such as sign language, as well, because it is the communication areas of the brain and not the speaking or hearing apparatus that is impaired".

They informed themselves about my condition by inviting a Neurologist to talk to them.

They organized to find information:

“Now, more importantly, Mehmet said that they are in immediate need of help FROM EVERYONE IWG in:

1) Finding out about institutes, hospitals, clinics offering Early Intensive Speech Therapy for people suffering from “Expressive Aphasia” Banu’s chances of full recovery heavily rely on participating in an intense speech therapy. She is already working with a therapist at the hospital, yet she will not be able to take advantage of this intensive care program once she is discharged (possibly this Sunday). As Mehmet is spending most of his time with her at the hospital, he is not able to make any progress with his research and asking help from everyone in helping him to locate resources (i.e. people with knowledge/experience on the issue or existing programs, organizations that could provide them with pointers / options)

2) Investigating Insurance Benefits, Medicaid Disability Programs (e.g. info on benefits available in Montgomery County) that they could take advantage of in the upcoming months.

a) Hospital recommendations – Zeyno
b) Medicaid, Health and Human services - enrollment forms -Hilda
c) Laptop -Nicole
d) Contact associaton of speech therapy practitioners/clinics -Manuela
e) Disability support/insurance and therapy options -Mirvat “

They collected money among themselves – despite our protests:

“Dear Members,
Banu needs our help: our help with money. She is recovering well but she needs a lot more therapy before she starts talking again. Her condition (Expressive Aphasia) benefits from timely and intense therapy. She is determined and committed to a full recovery. To this aim the family have decided to move to Michigan temporarily to participate in an intensive program which would involve practising 7 hours a day, 7 days a week for 6 weeks, and that will cost around 30,000 dollars. This is a major financial burden given that her insurance will only cover one tenth of the sum.We know that we cannot raise enough money to bridge this gap yet we could significantly contribute to her recovery. Banu gave to IWG liberally. Let us follow her example and help ease their financial burden. Please give as generously as you can.Please make your checks payable to IWG, reference Banu's Recovery, and send them to… “

They prayed in many many languages:
“Dear Zeyno and ladies,
I am also very worried about Banu.” “ Since I heard about Banu by Anjali's e-mail, I have thought what I can do. Actually I started to make "Senbazuru" (paper cranes). As you may know, Paper folding, or "Origami" is one of Japan's unique traditional arts. One of the most popular folding objects is the crane. It is said that many cranes make a wish come true. Many cranes are given to sick people in order to wish them a fast recovery. Folding them, I pray for her quick recovery. I cannot make so many cranes for her by tomorrow, but I am making an effort to make it with my friends as soon as possible.
Hiromi”

One Thursday morning, one week before I left for U-MAP, I was invited to a regular Coffee Morning event, where they surprised me with 1000 origami cranes and a check of over $ 3000.

“On Thursday morning, IWG members met with Banu and presented her with a Get-well present, ONE THOUSAND PAPER CRANES GARLAND! The wonderful gift was accompanied by donations from IWG members for helping Banu and her family cope through this condition. Get well soon Banu!”
At that time I was also volunteering for an Arts and Crafts activity within IWG. In order to explain children my absence, they made the children craft for me paper flowers.

After 2,5 years I sat down with my friends Nicole and Peter. They were the first ones who visited me at the hospital.
Although we weren’t very close at the time, we became very good friends afterwards.
So I asked them about what was going through their minds back then. What compelled them? They said: “One moment you were a full bodied, living breathing human being, the next moment you were in the hospital, unable to communicate. We knew you had a small child, we knew you didn’t have a family around you. So of course we came as soon as we heard to help as much as we could. We would have done it for anybody in that condition.”

Friends are very important. They lift each other up. My advice to you: Surround yourself with friends, from all walks of life, from different ages.

Financial side of things

2009-01-28T05:47:00.000-08:00

As we don't yet know how much therapy I'm going to need in the future, we don't know how much of that we can afford, and how much financial gap there is. Mehmet makes the decision that whatever needs to be done, needs to be done as quickly as possible. The first 3 months are critical, and then the first six months. Somehow the pliability of the brain decreases with time, we find out. The more you can recover earlier, the better it is. Although there are exceptions this is the general wisdom. So my husband is ready to do everything, regardless of the cost, as early as possible. He says, we will figure it out later. I have no say in that. On the one hand, I am afraid that it will bring us near financial ruin, on the other hand I envision myself being speechless or talking only basics like a toddler, therefore being only a burden on my family for ever, I also opt for the former... The more we can do to help me go back to my old self as quickly as possible, the better it is. My husband also decides that we should cover this within the means of our family. We decide it is OK to get help from our parents, but nobody else. Hence, we turn down offers from friends for financial help. We have a lot of friends dispersed around the US and in Istanbul, our home city. They cannot come and be with us, provide emotional and hands on help, but they want to help never the less. The one thing they can offer is fundraising for therapy. But we say no to that and instead, we ask for information, for research, whatever they can do in terms of gathering on line knowledge. They are very happy to do this.

But this incidence makes it once more very clear that we need a universal health coverage here in the US. If we were employed in any of the European countries, we wouldn't be in this situation at all. Therapy costs would be included in insurance policies. In Germany, we find out, Stroke patients are immediately shipped out to centers of excellence, where they receive full day therapy.
This is what I have written about the need for insurance coverage, to be presented at a "Toast Masters" club meeting, 2 years after my stroke, before Barack Obama got elected.

"A case about universal health insurance

Throughout the next couple of minutes I will try to persuade you, why universal health care is a must and not, as some people think, a “nice to have” .Also, excuse me in advance for having to be a bit depressing. Health matters are always an emotionally charged subject.

I want to take you to the year 2050, for a quick peek into the future:

Well, in this future there is no universal health care. On the contrary, Medicare and Medicaid also have been eliminated. The government is very small. Every service government used to provide, has been privatized, and running for profit…

So, in this future there is no public education. If parents want education for their kids, they have to teach the kids themselves, or they have to pay 20 000 $ a year for a private institution.

There is no public police force. So that if you are a victim of a crime, the first thing the police asks you is your crime-insurance card. No crime-insurance no police prosecution.

There is no fire department either. You have to have fire-insurance before you call the fire department.

The list goes on and on. For everyday activities like infrastructure, people have to pay as they use it for example roads or bridges. For more risky services like police or fire, people buy insurance. Rich people thrive, the poor are on the streets, uneducated and sick…

That is one scenario. It is a conservative-capitalist dream scenario maybe. But there is another scenario, a more altruistic scenario, where the more fortunate among us give back to the less fortunate. Especially when human life is concerned.

So, what does it to do with universal health insurance? EVERYTHING!

I assure you, that every one of us in this room, however inconceivable it may seem, is going to die sooner or later. Death and taxes are inevitable. But the problem is how to do that, and not leave a terrible financial and emotional burden behind. Because with the current system this is what’s happening.

Sooner or later most of us is going to face a major and expensive disease:
1- Cancer: We are going to have cancer, it is not a matter of “if”, it is a matter of “when”. One in two men and one in three women get cancer over their lifetime.
2- Cardio Vascular Diseases: 1 in 3 of Americans have some sort of CVD, as a result of which you may have bypass surgery or stroke related rehab.
When we get an expensive disease the options are: go bankrupt, or not receive the necessary treatment.
The #1 reason for bankruptcy in America, responsible for more than half of bankruptcies filed nation-wide, happens to be ill or failing health.

Let’s take my case: The mean lifetime cost of ischemic stroke in the United States is estimated at $140 048. To Medicare, the negotiated costs that is. Plus it only contains a limited number of rehab visits, or limited mental health coverage, when you are depressed. Just my speech therapy in 2006 alone cost $30 000.

Let’s take early stage breast cancer for instance: nine months of treatment: No hospitalization involved: $225 000

1) Not everyone has health insurance: Data released by the Census Bureau show that the number of uninsured Americans stood at a record 46.6 million in 2005, with 15.9 percent of Americans lacking health coverage.
2) Among the insured many claims are denied. In 2003 one whistleblower in Humana testified that officers get higher bonuses when they deny claims.

There must be a better way! US of A is the richest nation on earth. A behemoth. The others don’t even come close to our GDP. If we cannot provide for our sick, it is a shame. There shouldn't’t be a price tag on human life.
We have done it with education, with police, with fire, with infrastructure, with the army…. For this nation, whatever we set our hearts and minds into there is no escape, we do it.
This election year, we have a chance. Whoever you favorite candidate, McCain, Obama, Clinton… Push for it, the power is in your hands. .. "

I don't know my ABC's what about Math?

2009-01-26T11:06:00.000-08:00

In the hospital, various times I tried to do simple math, about after one week I could do addition, not adding 817 + 492 by heart mind you, but simple math like 4+5. The second week, at home, subtraction seemed to make sense. But however much I tried, multiplication didn't make any sense at all. My mind wasn't able to grasp the concept of 5*6. You see, I was able to add and subtract, counting fingers. So I was able to understand it by projecting it onto something simpler, like a preschooler. But Multiplication requires a higher, a more conceptual level of understanding I guess. Now that my son is in Kindergarten, I can understand why they can teach him addition but not multiplication yet. I guess a certain level of abstract thinking ability has to form before human brain is able to do higher math.
Not being able to do math is a problem, because, I am responsible of the family financials. My husband doesn't know how much money we have, or the bank accounts. I am doing all the taxes and keep track of the retirement accounts too... Now he feels like a fish out of the water. We try to figure out how we can make the payment to University of Michigan Aphasia center. It costs an arm and a leg, $30 000 for six weeks of treatment. Our insurance covers only a portion of it. Speech therapy, like physical therapy, is limited, after a certain number of visits you are done.
In our case total number of visits is limited to 60, that will be expired even before we go there.
Hence how much we can dish out is important.
But: I can't recall the words, I can't speak, I can't write, I can't do math... How on earth am I going to know how much money we have got, and communicate it?
OK, I know the basic concepts: I go to our filing system, which for me consists of a deep plastic rectangular bucket, with past years financial statements in it. I fish out our bank statements, IRA accounts, stocks etc. Then on a piece of paper I copy letter by letter bank accounts and the sums in them. I do it for all our non formidable assets. Gathering this document of 10 lines, takes me maybe 5 hours. But in the end I do it, give it to my husband. I don't know whether this takes some of the anxiety off for him also. But I do it, if only to see, whether I can do it. A small proof of what I am still capable of.

In the third week after the stroke, I regain my ability to multiply, and in the fourth week to divide. In that order exactly.
Week 1: addition
Week 2: subtraction
Week 3: multiplication
Week 4: division
Isn't it amazing? Exactly the order I have learned them at grade school. First in first out: Who would have thought that FIFO system was in action also in our brain too.

computer

2009-01-22T14:45:00.000-08:00

Towards the end of the first week at home, I have one more encounter in mind: The encounter with the computer. I am a bit afraid of that. Because, just as I have difficulty with writing and math,I fear whether I'm able to recognize the interaction with the computer. Everything I used to do before is a question mark in my mind. Will I be able to do it - to think it, to feel it - as I used to do? I sneak into the guest room, where the family computer is. I remember to turn it on - that is easy. The screen comes up, I move the mouse around, click on some things, that is also OK, I can navigate the several buttons and drop down menus. This all make sense to me, I remember what the are for. Now I go to the Internet to find out whether I can send any e-mail. Boy, my friends will be so happy to get news directly from me. OK, click on yahoo, click on mail...
Uh Oh! There comes the user id and the password prompts. For the first time I look at the keyboard: what a mess! I don't recognize any of the letters. Now, you must understand, I wasn't a fluent typist before either, but I could navigate around the keyboard. Now all is Chinese to me (and I don't know any Chinese, mind you). I know the password by heart; let's say it is "daisy12", I know that it start with the letter "d", and then "a", "i", "s" etc. I am trying to match the letter "d" in my mind, to the letter "d" on the key board. they are 88 buttons on the keyboard. I am scrutinizing each and every button, in order to see, whether there is anything that will match what I have in mind for a "d". And in the end I give up trying, there is no "d" in sight, or rather, I don't know what a "d" looks like; it could look like this "@" or this "%" or this "öİ" as far as me is concerned.

Mehmet comes and helps me with the password and stuff... At least now, even if I cannot remember how to write - even with the key board - I can read my mail, that is great, in and on itself. Plus, I am eager to relearn my ABC's, perfect timing because now my son (3 years old at the time), can learn it together. He already knows more than I, so he can teach me!

My own Pygmalion

2009-01-10T07:32:00.000-08:00

I can now pronounce many phonemes, especially the ones that I can see. Like: m, b, v, f and then t, d... Sandy says not to dwell too much on the vowels. Because mine are not clean at all. Like Eliza Doolittle, my "O"s resemble "Aow"s my "e"s are more like "ieie"s. Because of the half paralysis of the tongue, I have trouble with every long vowel especially with "a" and "oi", which require you position the tongue in a "Y" sound. Even today it is hard for me to produce the "Y" sound. Also glottal sounds pose a real problem like "K and G" Because I cannot see them, I cannot imitate them at all. I say It is a problem, because my son's name is Kaan. So far I cannot say his name.
One day Sandy drops in with an idea. It has occurred to her while driving. In order to say Kaan, we are going to work on saying the word "OK". This word I can say, although clumsily still I can say it, because the "K" is in the middle position. When I start with "O", and the meaning of OK is clear to me as a very familiar word, without thinking I can say OK. It is like a shortcut in my brain. Remember even 48 hours after the stroke I could write my own name. It is similar to that. The most used words must be wired, engraved in many different pathways of the brain, so that even one part of the brain is gone, they can be recollected via different shortcuts.

"Now" Sandy says, try to say "OK, Kaan!" after a few tries, I can say it. "OK, Kaan!" I repeat. Over and over again. This is a happy day for me. Although I cannot yet say "Kaan" I can say "OK, Kaan!" And that is enough for me. A very very happy day indeed!

* HINT: If you cannot say any particular sound, try them in various positions: Starting position, middle position, ending position... Especially try combining them with word you know since you were a Baby.

The consistent web of unwavering love 1

2009-01-09T17:26:00.000-08:00

Isn't it wonderful! The sun, and the wind, and the trees, and the sky, and the sounds that come from the living room when I open my eyes... Each day is a great gift.

The schedule we have put together works like a clock work. Everyday after early morning speech therapy with Sandy, I come home, and two friends visit me, one in the morning, one in the afternoon to work with me. Usually we repeat the lesson that Sandy had for that day, or whatever I had difficulty in. Over and over, nobody is getting tired. They try to teach me the sound "r" and "l". I have great difficulty with the "l" sound because either my tounge doesn't bend the slight curl that you need or I cannot touch the back of my upper teeth with the tip of my tounge, or maybe both. With Nicole we work on the "l" sound, we even try rolling my tounge around a pencil. It bears a lot of resemblence with my fair lady(!). With Zeynep we work on the "sh" and the short "i" sounds. She gives me a lot of hard time. With Zeyno we work on everything. We also chat, laugh and just have fun.

It is great to have my mom around too. She turns the house into a real home. She cooks, she looks after Kaan, she adds warmth to everything she does. But most of all, she encourages me beyond imagination. She has such an unwavering belief in me. Notices every progress and tells it to me lightheartedly. You cannot underestimate the healing power of all the people around you. They genuinely care. They care from the heart and it shows, in the belief, in the actions.

Begin from the beginning

2009-01-08T11:32:00.000-08:00

It is the first Saturday after leaving the hospital. Emre, my brother has to go back to Istanbul. Mom is staying for an indefinite period to help us. Mehmet and I go to the hospital, for my blood work. Every day I have to do that so that we know how to adjust the blood thinner - Coumadine . The drug interacts with every chemical intake - including of course food, so that we have to adjust the dose. If the bloodwork comes back too low, I have to increase the dose, if the bloodwork comes too high, I have to take Vitamin K to bring it back to a normal level. It is the same Suburban Hospitals lab that we go to.
While I am waiting in the waiting room, I begin to feel funny. I feel cold in the hands and arms, and the same "something is definitely wrong inside my head" feeling returns. The same feeling of the stroke. Am I having another stroke? I alarm my husband. He, in return alarms who ever is around. Immediately a triage team is assembled from nowhere. They lay me on a stretcher and wheel me into the emergency room. There I wait and wait, to me and Mehmet it seems like an eternity. The same nightmare again: ER, electrodes on my chest, CAT scan... Somewhere between ER room and MRI room I scribble on my Magna doodle " Take care of Kaan" and show it to Mehmet. His eyes tear immediately, so do mine. This time I am sure that I'm going for good. I want to say so many things to my husband, to my son... So much unfinished business... MRI machine is the worst, it takes 40 minutes inside the sacrophagus, you don't know what you have, what you will be. By the time I come out Mehmet is relieved. I don't have anything the doctor's say.
What was is it then? What has just happened? Nobody has an explanation.
We come home eventually, I am exhausted. I long for my bed, and sleep and sleep.
One week after the incidence we figure out that it was a panic attack, one of many I am to experience in the future. We now know that it was a panic attack, but neither know what triggered it, how to prevent it and there is always the possibility of it being the real thing. So you say to yourself better safe than sorry and you call people for help.

Friends 2

2008-08-20T05:48:00.001-07:00

It is good to see my friends again. They cheer me up, they bring flowers and chocolate, they offer me help of any kind: bringing food, doing chores even coming to clean the house… So nice of them to do that. But I have something else in mind for them to help with: my Speech.
With great deliberation I write down a schedule, later I will ask my mom to connect each one of my friends on the schedule and confirm. They are: Naciye, Zeyno, Nicole, Hilda and Zeynep. Nicole and Zeyno are working from home and they have flexible hours, Naciye and Hilda are full time moms like me, and Zeynep is a student.

We will give the schedule a try next week. They don’t know what they will help with, I don’t know either, but we will see…

Friends

2008-08-18T05:42:00.000-07:00

In June of this year, I contacted my first speech therapist Sandy and requested an interview. Sandy, who is quite a character, had read my blog. She corrected my last entry. She said that it wasn’t until the 20’th day or so that she would give me a list of full words. Instead, the first weeks went by, by trying to produce some sounds, I had luck with.
She said that her strategy as a speech therapist was: she would take a sound, any sound I could utter, then do variations on it, see whether I could pronounce them. Depending on which ones I could pronounce, she would add them to my vocabulary or to my working list.
Let’s take the sound “P”. It is somewhat easy to say because you can watch how the therapist’s lips are closing, you can feel that there is no vibration of the throat. The “P” sound is produced by bringing the lips together followed by an explosion of air, blowing the lips apart.
Seeing I could utter “P”, she would work on variations that would be familiar to me. Like: “Pooh” (as in Winnie the Pooh), like “Pee”, or “Pa” (as in Papa) etc.
In other words, she said, she would build on success and go from there!
In her presence, I was always on my toes. In an encouraging sort of way.
During that one hour of speech therapy, I spend so much energy, I cannot believe. I sweat profusely, my toes are clenched, my knees are locked. By the end of the hour, I’m so tired, I’m ready to sleep in the car.
By the end of the week my friends pay me a visit. Here, I have to open a bracket and tell you about my friends a bit.
I have moved to Metro Washington DC area in 2003, right before my son was born, two months before. My son was born in May. With that birth I developed post partum depression. I had no history of depression before, I am quite a “no worries” person, quite determined in my attitude…
But moving to a foreign city, leaving all my support system behind was, I guess, the last straw on the proverbial camel’s back. It did me in. I spent an entire year crying, torn between the feeling of guilt –for I couldn’t show any affection for my son – and my own survival instinct… Then we moved to a Condominium complex and so I met Ursula. Ursula was a German lady with two very cute children, one my son’s age. Through Ursula I met a wonderful friends: International Women’s Group (IWG). A group located in Bethesda MD, about 100 – 150 woman of all nationalities. All new to DC area, all in the same boat of raising their young children and needing friends. So we all leaned on each other for support, for laughter… Slowly with the help of medication, lots of sleep and a better social environment my depression cleared. I started to think about volunteering within the group because I wanted to give back to this community who had helped me in my darkest days. So in 2004/2006 season I volunteered for the Presidency of the group and I made even more friends this way. Within those two years, I also befriended wonderful Turkish women through IWG, we became each other’s family in the absence of our own families.
It was in the middle of all this when my stroke happened. Everyone in my friend’s group was shocked. Utterly shocked. Stroke is something for elderly people, we all thought, not for somebody in their 30’s, raising young children… Suddenly the reality of vulnerability set in.
It is a tradition in our group, when a friend needs help, we all line up to help her any which way we can. In my case, my friends didn’t fully know how to help. My mother had come from Turkey to help with my son and the house, my husband was a physician at NIH. What kind of help could be needed?
They started with the most logical thing: Informing themselves. They invited a neurologist to talk to them about aphasia, to understand what it is about.
It is quite common that after a brain injury or a stroke one has paralysis. In that horrible case, there is something visible. People can understand the case of a limb not working. But in the case of loss of a hard to explain brain function, people classify that as a mental health problem and put you the same category as “all those crazy people”. It is a kneejerk reaction of facing the unknown. For almost anybody losing mental functions is unthinkable. We understand we get the flu, chickenpox, lower back pain even cancer… But losing our mind? That is a no no, as we imagine ourselves bravely facing all atrocities, enduring pain and thus modeling courage for our children… Having a part of our brain not functioning has no role in this scenario. Although, of course brain is an organ just like any other, it has a remarkable capacity for healing, but nevertheless it is an organ, it can malfunction.
So, after my friends informed themselves about what to expect, they came to visit.

My other therapist

2008-08-12T04:29:00.000-07:00

My other therapist:

Sometime towards the end of the second week I ask Mehmet to get an appointment from my psychiatrist Wendy Hookman. I want to consult with her about my medications, now that I take many of them, I want to ask whether there are any drug interactions I should worry about, whether the current dosage is right.
Why do I see a psychiatrist? Because when I gave birth at the age of 36 I have developed post partum depression. I never thought that I would fall victim to mental illness; having lived a very stable, robust, straight forward life… But when I gave birth I fell into a deep deep hole. It started with 2 miscarriages followed by a high risk pregnancy. At the 7th month of my pregnancy we moved to Washington DC, a strange city, no friends, no family… I was diagnosed two weeks after giving birth. I didn’t want to take any medication because I was breast feeding until the baby was 6 months old. After that I couldn’t take it anymore and started medication. Thank goodness the first medicine worked and I started to recover after two months. Unfortunately after that incidence my brain wasn’t able to produce serotonin at the old levels again. To this day I take my medication religiously albeit at a much lower dose. It is much like with any other deficiency. For example, a significant number of women develop diabetes while pregnant, after birth usually this goes away, but for some, their pancreas seizes to produce sufficient insulin. Mine was like this, my brain seized to produce sufficient serotonin.
Now, we know that for some people SSRIs (depression drugs) may have a blood pressure raising effect. In my case this was the fact, of course we found this out after the fact.
Mehmet and I sit at the waiting room, well… waiting. He is going to do the talking for me this time. In any case I bring my magna doodle with me. Wendy finally invites us in, asking me how I am doing, I cannot answer of course. She laughingly asks me whether the “The cat got your tongue?” When she finds out what happened, she is utterly shocked.
She questions me and establishes that I am happy, that I should continue at the same level of drugs, that there are no adverse affects with the new drugs which include a blood pressure drug. Well, in fact, in many ways I feel better than I ever felt in the last 4 or 5 years. Why is that? I feel almost euphoric. She explains that when someone experiences a stroke, most of the time, this acts like a electrical shock to the brain, increasing the serotonin levels. But she says that the good feeling usually lasts for about six months or so, then it returns to normal, whatever they were before. I am so lucky to be given this opportunity by my injured brain, so that I can deal with its aftermath. I explain to her that when I compare the periods when I was experiencing depression v.s. now, now is much better, depression was much worse. What is the difference? Depression is a lonely experience, very lonely. Nobody understands the deep hole you are in, you feel there is no escape, things will only get worse. Whereas everybody around you thinks that only if you would get your act together! Slip out of it! But of course you cannot. Your brain cannot suddenly begin to produce serotonin any more than a diabetic person’s pancreas can begin to produce insulin.
Whereas with the stroke, it is obvious what happened to you, you are making progress, it can be only better from now on. It is a shared experience. People understand and help you.

9th day

2008-04-21T04:09:00.000-07:00

Now Mehmet has a weird schedule: In the morning, at eight he brings me to speech therapy, waits there for me, at nine we drive home, then he drives Kaan to preschool, drives to work, at noon he picks Kaan from school, drives back to work. I'm sure at work his mind is nothing but at his work, instead he researches my condition, why that happened, everything from what my blood counts should be, to how to afford the Michigan treatment.

Sandy greets me with a big smile. We begin with a list of the following words:

Hi (*)
No (**)
Me (*)
You
Bye (**)
Yes
I (**)
See (?)
Day
Go

One
Two
Three
Four
Five
Six
Seven
Eight
Nine
Ten

Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday

Out of the list, I've marked what I could say at the beginning of the one hour session with (*), and what I could say at the end of the session with (**).

Sandy says the words and I imitate her. She encourages me to use gestures with each word:

Greeting with "Hi", Waving good bye with "Bye".

After I have mastered "Hi" and "By", Sandy literally takes me by the hand and walks me over the therapy floor and encourages me to say Hi and Bye to everybody I see on the floor. The whole shabang with waving and greeting.

She divides speech therapy into two parts: First half is speech production, second half is word retrieval.

She doesn't spend any time on dysarthria ( right side of my face, and half of my tongue being paralyzed and everything) because she says that when I push to use those muscles on my face hard enough to produce sounds, paralysis will take care of its own. She compares it to two people training for Karate. One of them does a lot of push-ups and a lot of that kind of exercise, the other one just fights, but they spent equal amounts of time doing their own thing. When the one that only fought so far is challenged to do push-ups, she can do as many push ups as the other one, who exercised, plus she is much better at fighting.

So, the second half of speech therapy is spend with me trying to write things on a sheet of paper.

First of all, she wants me to write down my address and memorize it. That way, she says, I can be on my way towards independence. Then she gives me key words and wants me to use them in a sentence.

These are typical of the words she gave towards the end of the first week or second week, and the sentences I wrote with them: But beware! Facing every word my brain drew a blank. Total blank. Then after a lot of thinking I would formulate a concept like "therapy is good" than while writing it with great difficulty I would slowly add on words and concepts to it like "confidence", and of course I would have again great difficulty with prepositions and the word order. In the end after a good hard stare at the paper, I would come up with something like below. But each and every sentence I knew that I needed to push to its very limit, try to cram in as many concept as possible, and not be satisfied with just one concept, however long it may take. For example, I believe writing those 5 sentences below took me a good 30 minutes or more.

Therapy: "Therapy is very good, it gives me confidence."

Coffee: "Mehmet wakes up to the smell of coffee every morning"

Son: "My son is the most polite son in the world."(*)

Friday:"Friday is the 2nd of my son school." (meaning: Friday is the second day of my son's school. - a total nonsense by the way)

Work: "Work is somethink that I don't miss very much."

After that we would do an exercise like listing all the activities I could do to play with my son.

"playdough"

"playing with trucks"

"playing with the alhabet trains"

"playing with the train set"

"making pizza"

"watching tv togeter"

Hey! My essay got published in Newsweek!

2008-04-12T04:38:00.000-07:00

Check it out: http://www.newsweek.com/id/38572

8 days after the stroke

2008-04-07T04:02:00.000-07:00

That weekends hard work paid off. Now I can pronounce many sounds, and say a few words.
.....
So on Monday morning, the 8th day, we are on our way to speech therapy at Advantist Rehab Hospital in Gaitersburg, MD. Our appointment is at 8am. We are scheduled for 5 day a week, for 1 hour sessions. My speech therapist is Sandy. She extend us such a warm welcome, that immediately feel at home. More over, in her opening speech she says that she will do everything in her power, to help me get my speech back, and by gosh, I will definitely get better! Such and encouraging attitude!

Then she begins her assesment with: (does the picture look familiar???)

Explain!

Of course my vocabulary is so limited I can only bring out:

"mom, son, su (for water)"
I can fully understand what is going on. But of course cannot bring it out. Well almost fully. When I look at the picture, lots of things are happening. First It is hard for me focus on the entire picture, and grasp everything at once (it is still hard by the way) When I found this picture on the internet ( from Boston Diagnostic Aphasia Examination )it was saved with the name "cookie theft". It never occured to me to give it a comprehensive name like this, even today. Please look at the picture carefully, dear reader. Can you grasp it as a whole? I can only focus on the parts, but I'm never able to grasp the whole picture as to give it a name. For example I can focus on kids climbing a stool, boy reaching out for what seems to be cookies, the stool about to fall, the mom, the sink... But I can only concentrate one part at a time. Even today almost 2 years after the stroke. If you do the exercise your self and tell me if you can perceive it as an holistic picture I would be grateful.

For example I can understand what is going on in this picture. It is simple, well defined. As opposed to the above picture.

I guess people with aphasia need simple, well defined images. Photographs as opposed to hand drown pictures. This is especially true for aphasia aids. You know, the binders or sheets with pictures on them in order to help point out what a person wants to communicate. If possible I would all throw them into a garbage bin. When a person newly acquires aphasia after a stroke or brain injury, I woul take clear simple pictures of their home environment and glue them on a sheet of paper.

What was wrong with the speech therapy at the hospital?

2008-04-03T12:26:00.000-07:00

Now that I have 20/20 hindsight, I can clearly see what was wrong with the 5 days of speech therapy at the hospital: The sounds! For 5 days I tried the sounds: A, E, I,O, U. In other words the vowels. But given that half of my face and tongue was paralyzed, I couldn’t pucker my lips to produce the sounds O and U, I couldn’t use chin and cheek muscles to produce the E sound, and I couldn’t use my tongue inside to produce the A sound. So all I was left with was an unrecognizable “I” sound like “It”. Whatever the therapist would point at I would always say “I”. But when I left the hospital, I was given the homework of working on: P,B,F,V, none of which required any vowels. I could bring my lips together to be able to eat, so I could at least utter P and F.
So we began with those sounds. “Bring your lips together. Now blow hard!” That was the “P” sound. “Feel how my vocal chords are vibrating. Feel it? OK, now you should do the same. OK now it gets complicated a bit. When at the same time you utter the “P” sound, if you make your vocal chords vibrate or hum you will have “B”.Wonderful!” Now “F”. Place your lower lips so that it touches your upper teeth. Now blow air out. If you can vibrate your vocal chords again while saying “F” then you will produce the sound “V”.
Mehmet and I would sit opposite to each other and say “pen” over and over again. Then mom would take over and put her index finger slightly into her mouth close her lips around her finger, urging me to do the same. “Now hold it, hold it. After I close my lips around it I will take my finger out. It will leave your lips in an O shape. You should do the same but not let you lips slacken, and then hum.” When I hummed, out came the sound “O”, because my lips were still forming an O. I was so delighted. From now on when I couldn’t think of how to form an “O” I could always put a finger into my mouth, take it out, and then say “O”.
We worked that weekend very hard. Whenever I wasn’t eating or sleeping, we worked.
On the aphasia front (putting concepts into words) there was also homework to be done. My caregivers (mom and Mehmet) were to draw some pictures with simple sound, then point them to me and ask me to say it, when that failed they would say it and then ask me to say it. Then they would ask me to write it, when that failed they would write it themselves and ask me to copy it down. So they drew “water” (in Turkish “su”), medication (meds), fork, sun, pen, paper, bed, table, up, down, left, right, book, ball, hand, moon, moon, bell, boot, head, lamp, home, salt, milk, food… I could understand all their drawings that was an achievement by itself. But I couldn’t come up with words. After several times they said it I could say something similar – maybe. They would say “fork” after some time I could say “fo” etc.

your mission- should you accept it - is to produce the sounds:

2008-04-01T04:07:00.000-07:00

Your mission - should you accept it - is to produce the sounds: P,B, F ,V .

This is the homework the last speech therapist left us with. Mehmet and I are sitting face to face. He takes the lead. As I've described in my previous blog we relentlessly work on production of these sounds. Slowly I can also say ba ba da da...

By now I'm also much better with gestures. I guess I can do the full range of facial expressions now. Happy, sad, angry, puzzled, jump with joy... Also, I'm able to write more and more things, if I can remember the words.

I have borrowed my 3 year old son's Magnadoodle. It is a magnetic drawing surface, with the attached pen you can draw pictures and write messages. Easy-slide eraser on the bottom clears the screen. I can write on it with the attached pen, then I can erase very easely. I can draw basic pictures. It is available at every toy store, costs only a little. The first few weeks my son protests, then he gets used to mommy using his toys. This becomes my main communication device for the next month. Isn't this cool? It is a perfect tool, as I'm starting my communication life from the beginning, and going through the same stages as my son went 3 years ago: Ba ba ba da da da.

Last day at the hospital

2008-03-29T13:21:00.000-07:00

Yes, it is my last day at the hospital. Since yesterday I'm in a normal ward on the 3rd floor. I was able to accept visitors. Three of my friends came, I was feeling very lucky, and very much alive. A second chance to live! I am cherishing every moment -I still am -. So despite the hospital gown and everything I am very glad to welcome everybody. Kaan, my son is sitting on my bed, playing with every feature, up and down, TV off, TV on... Mom, my brother, three families all in the same room... I am very uplifted to join the crowd.

The same day a different speech therapist is on duty. I feel much more comfortable with this therapist. She is much more at ease. At the end she gives us some home work for over the weekend- because I'm going to be released home today.
The doctor comes and declares that my ......... counts are in line within normal limits. So I can go home. He gives instructions on using coumadin. Coumadin is going to be a key word within our household for the next six months. Then he signs my release papers. Then he does something else: he forbids me to drive. In other words, while singing the papers, he crosses off the line which says: She cannot drive. That is a major blow! Because it takes away my independence. Not that I would want to drive anytime soon, but having loss of speech is hard enough, having loss of mobility is something I didn't expect. Of course, I cannot be trusted with operating a killer machine like a car. What if I had a seizure while driving? A lot of stroke survivors do. What about my reflexes? All of the above are legitimate questions. With those thoughts we leave the hospital.

It seems a lifetime ago since I left home, although it was 7 days ago last Saturday morning. How very strange. Mehmet takes my arm to go up the stairs. Our condo is on the second floor. I want to take a shower. Then I'm ready for a deep and long sleep.
One thing about hospitals is that you cannot rest there, ever. Contrary to human nature, when you need your rest most to recover, you cannot sleep at all. Continuously there are disturbances: IV, tubes, constant beeping, nurses coming in and out, blood withdrawal at 5 am in the morning... You cannot get a wink of sleep.

Oh, how I'm ready to sleep, I feel safe, my bed is made....

How very embarrassing

2008-03-22T04:26:00.000-07:00

further on understanding the written word

2008-03-17T04:06:00.000-07:00

It is almost my 4th or 5th day in the ICU. My brother has brought me a book, by a new Turkish author. On the cover there is a young women in her 30s riding a segway. I try to read the title, no truly, I try to decipher the title. No matter how I try, I cannot make any sense of it. I know that they are 3 words on the page, with full concentration I look at them. The harder I try to focus the more elusive they become. Again it is like trying to look at a shining star, the more you look at them, the more they disappear. I don't mean visually I cannot take them in, I mean I cannot process the visual stimuli in my brain, to convert them to a meaning. It is another aspect of aphasia, similar to the fact that the more I try to remember a certain word, the harder it becomes to remember. Certainly a part of aphasia is a disconnect between knowledge and conversion mechanism of the brain, either into expression or into deciphering.

By the way, I have made small improvements on the expression front. Now, when I can think of a word I sometimes can explain it through a combination of schematic drawings and the "vocabulary" my mom helped me build through her drawings. Just today I was able to explain the concept "farmer's market" to her. Of course this took me 1/2 hour, but hey, I've got all the time on the world, and from now on, expressing is my job.

Also, slowly I make progress on the writing front too. I'm able to write my family's names by memory, without having to copy them. Also the title page of the book I told you about, by the end of the fourth day, I can recognize the individual letters.

But there is also something funny going on. Today I asked my mom for her telephone book. In my mom's book all my childhood friends' telephone numbers are listed. I figured, going through the pages, I can recognize some of the names, and copy them down with the intention of bringing them forward when I need them. But, alas, when I got the phonebook, there was another challenge: All of the phone book was written in 'cursive'. A very significant challenge indeed. I was quite angry with my mom, because she chose to write in this cursive language. It was precisely that to me, a different language. Nevertheless I could recognise some names. Like some of my best friends.
By the end of fifth day I could think of some words and write them down (of course terribly misspelled), but I am very proud.
Another interesting phenomenon: I tend to put the words or numbers I'm able to write, in rectangular shapes. Mom finds it very odd. I find it so reasonable that I'm sure there cannot be any other form of writing. When people write down words for me to copy, if they are not absolutely perfect, I have trouble, I cannot assign any meaning to it.

re-discovering drawing or not

2008-03-04T06:36:00.000-08:00

In my spare time in the ICU- that means when nurses don't come to change IVs or my pee bag or draw some blood or come rushing by because of the wires that hang from all over my body beep - I try different methods of communication with my mom. Mom writes something on a piece of paper, I copy it down. Then I try to draw something. Am I capable of drawing now? In the past I was an amateur artist. I really wonder what my mind and my hand will do, as I begin to draw.
I think of drawing a straight line...
Ta da... My hand draws a straight line! Now some circle, yes, it is a circle!! Now that I get the hang of it I draw all kinds of things: a triangle, a square.... Yes! maybe I can communicate after all, by drawing! I am so so so happy!

Then I try more complex things like a chair. I look at a chair in the room, I try to imagine the concept of the chair... My my mind is totally blank. Nothing comes to the minds eye, exactly the same way words won't come. Instead of a chair I draw a rectangle. Everytime I try to imagine a concrete concept, my hand draws the nearest schematic resemblance to it. For example a table becomes a rectangle, a yogurt cup becomes a circle on a square…

Then I try a different tactic: instead of trying to draw it myself, I want my mom to draw it. Maybe like the written word, I can copy the pictures down.
She draws a tree, copy down the tree. She draws a cherry, I copy down the cherry.
But this time, I can draw the same tree, from memory, without looking. Yippie!

The interesting thing is: I can draw the tree, exactly as it was, but I cannot draw another one. For example, if my mom draws an apple tree, I can imagine THAT apple tree, but cannot make a variation, cannot draw a pine tree for instance.

Isn’t that very interesting? Maybe, if you think from a historic perspective, this is the reason how the picture-scriptures have evolved, like those of ancient egyptians or ancient Chinese. Maybe there is a separate section in our brain that specifically deals with schemata, with is different from images and from word.

Heck I am learning so much here, I feel almost like a living science experiment.

I really feel that way at the moment. As I said previously I am not depressed at all, I am only curious about what will come next. It is a shame really, not to being able to share all those thoughts with my mom or with my husband…

a very resourceful site http://www.aphasianow.org/:

2008-03-03T18:42:00.000-08:00

If you are looking for insight into the world of people living with aphasia, try this site:
http://www.aphasianow.org/

the black box = our skull

2008-03-03T08:34:00.000-08:00

I have to open a long bracket here and explain something; 16 months have passed since my stroke. Recovering my writing abilities took maybe four to six months. By recovery I mean, writing what I wanted to write, how I wanted to write it, albeit very slowly. At first when my aphasia was stronger, I couldn’t think in words. Then I started to retrieve words, but couldn’t find the symbols - le When I was handwriting, then I wrote veeery slowly, saying every word first in my head, spelling it, then transfer these on paper. Still, I made many mistakes, because of appraxia. While my mind was thinking “a-p-p-l-e”, my hand would write “e-m-n-a-l” , I would try again and this time my hand would write “a- m-p-e-l”. The same, when I was typing on the computer, although computers have an advantage because of built in intelligent software, they self correct things – of course if you write “emnal” instead of “apple” even the smartest software doesn’t know what to do.
Many months later, here I am, thrilled to be able to write all this down for other people to read. The most peculiar, maybe even funny thing is that, all that time, I was able to think. I was able to understand, to comprehend, to reason everything in normal terms. Although words were missing in my world, I don’t know how, but I was able to think. I don’t know how you are? Some people think verbally, they have to use words to follow their train of thought. Some people think visually, in other terms they see images in their minds eye. Yet again some people see moving images in their minds to think, they say, it is almost like snippets from a movie.
There might be many more kinds of thinking. All of this I have found out recently by asking around. I guess I was thinking in “Concepts”, and not so much in words. Or concepts and words were stored in different areas of the brain so that my thinking and reasoning was not impaired.
After my stroke I became even more interested in how the mind/brain works and to a greater degree in cognition itself. As of early 21st century, the “how the brain works”, the cognition, remains as the last frontier to be concurred by mankind. Particularly because it is all happening inside a black box, meaning our skull. Brain is hard to observe and dissect in action. Recent imaging techniques, especially f-MRI opened a major door into the human mind, and a lot of discoveries have been made in term of understanding the chemical processes behind the electrical. Still a lot remains to be discovered.
Because the brain is still a black box, we can only look at the output manifested by muscle movement. We can look at what is said by moving the muscles around the mouth, we can look at emotions as displayed by facial muscles, we can look at gestures as displayed by muscles of the body. That is how we as human being understand what the other person is saying. We have to decode what the other person is saying by looking at the manifestations of the muscles. So, when the muscle movement has been altered or gone we decode wrongly. We attach meaning to the wrong things.
This has gigantic implications: If a person is paralyzed or has spasticity, automatically we think, that persons mental capabilities must be lacking. Although inside the mind, that person can be perfectly capable of thinking and making judgments.

The Yellow Submarine

2007-12-29T19:14:00.000-08:00

I love the Beatles, but I didn't much care about their song "The Yellow Submarine".
Is it a curse then, that I now seem to be stuck with that song, forever and ever playing in my head? Yes, I'm not joking. After my stroke, a funny thing happened: Whenever I try to remember a song - any song- any melody - I face a continuous loop of the same insanity:

"In the town where I was born
Lived a man who sailed to sea
And he told us of his life
In the land of submarines"

I try hard to think of other songs, for example: "Twinkle, twinkle little star!" But no - instead:

"We all live in our yellow submarine,
Yellow submarine, yellow submarine"

Maybe something more contemporary would work? I try several songs, both melodies of my mother tongue and in English, melodies from my childhood and present.... But alas...

"We all live in our yellow submarine,
Yellow submarine, yellow submarine"

When I listen to other melodies, I can accompany them internally, but after the music stops, so does my accompaniment. It is almost a short term memory loss of "musical abilities", replaced by a giant submarine.

An ordinary Tuesday at the hospital

2007-12-17T13:34:00.000-08:00

The morning ends with the speech therapist coming into the room. Again I cannot produce any sound at all. Then comes the questioning about various objects and concepts. She asks me to point to the "doctor" sign on a sheet of paper. From various options, I cannot select the sign. She points it out. Then she asks me again. After maybe 30 seconds of thinking and evaluating I can point it out too. Gosh, it is really hard work. I have to concentrate very hard. Much later, may be after one year, when I ask my my brother about the hospital days, he volunteers that during those days I was like a very slow processing computer. You put a search word in, hit enter.... and wait... and wait..., and finally the answer would come. But I was not noticing that so much time went by. I was really thinking hard.

After lunch a cardiologist comes, he is going to perform an oesophageal doppler ultrasonography. That means he is to put a tube into my esophagus, and measure my cardiac output. OK.

After he performs the non invasive procedure, he gives me the "All clear!" sign. And tells that I am as healthy as a mule. Of course he doesn't say this with those words! But long story short it is what I take out, or what I need to hear.

Now comes time time for the angio. Nurses come and take me downstairs to the radiology room, they speak among themselves freely, joking...

It is highly peculiar, how this thing works. People who come to the hospital are sick or injured. Most of them are experiencing big or small personal tragedies at the moment they are admitted. At the same time, for the people who work at the hospital, it is business as usual at the "office". Same old , same old... They cannot walk around with grim faces all the time, nor should they. But this juxtaposition leads to one big emotional question mark: the question mark behind what is special and what is common. The emotions float freely between mundane and extraordinary. If you think about it, every human being's coming to this world is the single most unique experience in his or her life -and the people around them- so is every persons death. But at the same time, life as well as death are extremely ordinary. Everybody dies, everybody is born somehow... Sickness and injury are inbetween states. As for the hospital people, they deal with people's most singular experiences in the most unremarkable way.

Sorry for the ranting... The reason why I sidetracked for a while are nurses that came to bring me downstairs. They are joking among themselves and they are also joking with me. "Whazzup?" "How is it goin' eh?", I'm delighted to join in their joyous dialogue. I want to say: "Sugar, Were Goin Down Swingin!" Unfortunately, my communication repertory is limited to four gestures, so I reply by turning my hands around each other. " Yes, right!"he says " Crushing waves! Crushing waves!" Mehmet and I look to each other, laugh out loud. From then on we will refer to this gesture as "crushing waves" movement. With that Mehmet is kindly shown the door, and I am on my own.

The doctors make an incision to the artery in my groin, for a minitube to go all the way to my blocked carotid artery. The operation goes very smoothly, and I'm out in no time. Back to my room.
Soon they will tell us, after deliberating the matter among the "stroke team", the long awaited diagnosis : FMD (Fibro Muscular Dysplasia)

What? (more about that later)

to angio or not to angio

2007-12-17T07:55:00.000-08:00

The following morning the doctors come with an important suggestion: They want to make an angiogram of carotid artery, post mortem (!), and see what has caused the stroke in the first place. It will not play any role in my recovery. As far as we could see from the MRI, there is a child's fist size dead region right in and around the broca's area of my brain, which will not recover. This is my brain's picture you see on the left hand side.
They say this is important to prevent other strokes in the future. But it leaves us with an important question: To angio or not. Because there is a 1% chance the the operation will cause another blood cloth that may go into the brain once again. The doctors insist that it is the best course of action. As Mehmet is the physician in our family, I leave the decision to him. And thus I put him in such a difficult position. So difficult... he has to decide about my future... Although I'm physically there, seemingly alright,but because I cannot voice my opinion in any intelligent way, people around me are not sure of my comprehension skills. Heck, even I'm not sure of my comprehension skills! It is much harder to decide in behalf of a loved one.

In the end we go with the doctors suggestion. After they leave my room, Mehmet comes to my bedside, takes my hands into his and tells me :" Whatever happens, Banu, I will always take care of you! Always!". However corny this may sound, it fills my heart with tenderness and love for him.

Meeting my Mom and Brother

2007-12-07T07:44:00.000-08:00

That evening my mom and brother come from the airport. I don't know what condition I will find them in. I hope they wont cry. But even if they cry, I know that I will be strong for both of us.

Muammer, another friend of ours, has gone to the airport to pick up my family, so they enter the room laughing and talking, as if coming to a regular family gathering. We hug. It almost feels like coming home. Mom is very strong. She smiles as she looks at me. The only thing that tells me something is awry are my brother's tears that swell up, as I hug him.

Mom tells me that from the moment they told her I had a stroke, she had the feeling all was going to be well. It was with that feeling she spent the last 16 hours on the plane.

After I left my mom and dad behind in Istanbul to come to the US - ten years ago, I have always feared the worst with every ring of the telephone:
'Someday, my brother will be at the other end: "I have bad news." he will say, "We lost Dad -or- Mom." ' Then I will feel a deep regret, not being with them in their last moments. A deep deep regret...
How life throws curve balls when you least expect them. Who would think that my mom was going to be at the receiving end of the telephone?

It is already 11 pm at night. Mom and Emre (my brother) go home. Mehmet, my husband, stays with me at my bedside. For the past three nights he hasn't slept much either.

my story 6- Meeting with my baby - Kaan

2007-12-04T06:22:00.000-08:00

Hi! I'm back after 2 months, been gone to visit my parents, relatives, friends in Istanbul. It's been heavenly.

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In the afternoon My baby -Kaan - comes to the hospital. He is 3 years old at the moment, and never left with other people, not even once with a babysitter. So he must be in quite a shock himself, with no mom and dad around. We left him with a couple of friends for that weekend, Zeynep and Emre, who were the only people present at the moment. Until that incidence, he and I have been inseparable, a lot of times he even didn't want my husband around, but me.

Mehmet has told him from the get go, that "Mommy is going to the Hospital, she is going to spend some time there because she is sick. She currently cannot speak, but will be better soon". The moment Kaan enters the ICU, it is a moment of truth. Will he accept the new me, or will he run away? Because Mommy has changed a lot.

Kaan enters the room on my husbands lap. He doesn't run away, but he also rejects to come near me. Of course, I cannot claim to be the Beauty Queen, with all the wires, tubes and pipes going into me or hanging out of me. When he is asked to give a kiss to Mommy, he comes near for my kiss, but refuses to sit on my lap. After that he becomes his 3 years old self again: pushing buttons on the side of my bed to make me go up or down. With that he has a lot more fun. After a while, when he is told that his buddy, Arman, is waiting outside, he goes merrily to the lobby.

One more obstacle down! Kaan seems happy. Children are much more sturdy than we give them credit for!

my story 5 -aphasia assement at the hospital

2007-10-10T06:48:00.000-07:00

Then she takes the pad and writes the name of my husband. She asks me to copy it down. To my surprise, I can do it. She writes down "Kaan" I can also copy it down. But when she gives me a blank page I cannot write anything down but my name over an over again.

She wants me to imitate her in saying certain vowels like: "OOOO, UUUU, EEEEE". Let alone imitating them, I cannot even fathom what she wants me to do. It is almost like she has came from another planet and she wants me to use telekinesis to bend a spoon or something. How shall I know how to do it? Which command shall my brain issue to bend the spoon? I have no idea!

Finally she shows me a page with different symbols on it. And wants me to point to the one with a 'doctor' sign on it, then a 'nurse' sign, 'food', 'water'... But the efforts are futile. The feeling is very odd. I know what a doctor sign should look like but among the multiple signs it is impossible to point to the right one. If only it could be simpler like one sign per page and then give me a selection between two signs only, then maybe I could give an answer. Or a very simple photograph, schematised drawings confuse me.
Besides pointing to the written word is very difficult. It is as if spoken word and gestures are one and the same. It is a bundle I cannot separate.

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So far for today. I will be back. Meanwhile check out Jean's blog. Her husband Don lives with aphasia, and she has the difficult job of decoding what he intents to mean.

my story 4

2007-10-09T06:16:00.000-07:00

On Monday morning, two days after the stroke, I get a visit from the speech therapist. She gives me permission to drink and eat. Whoa! What a relief to see that I can swallow! I'm eating very slowly so that I don't accidentally inhale anything. I'm told that the most common sickness after a stroke is pnemonia.

But eating is no easy task either: the right side of my face from my eyebrow down to my chin is paralysed, including the right side of my tongue. This feels very weird: all of a sudden, the four wheeler car I have been driving blasted off two tires and I am trying to manage on two wheels alone. So continously I bite my right cheek, lip and tongue. By the end of the breakfast I'm a bloody mess.

Then comes the speech assesment. I cannot produce any recognisable sound whatsoever. The only sounds coming out of my mouth are: "Hmmm Hmmm!" (to indicate yes) "Ummmm!" (to indicate no).
Everything is oddly fuzzy. At the same time everything is very clear too, but whatever I'm trying to focus on that becomes instantly fuzzy. You know the feeling of looking at the stars, they all seem very bright but when you want to focus on a particular star, that almost disappears. My visual skew is especially true on my right side. Allthough I have plenty of peripheral vision, I still feel like looking through a tunnel. The analogy with 'the stars at night' is also true for words. Whatever concept I am trying to think of and remember the name, it escapes me."It's right at the tip of my tongue." But as hard as I try to remember I cannot do it. Another issue is get my muscles to move. Just like a paralysed arm or a leg my brain cannot command my muscles to do anything at my will. The funny thing is that I also seem to have lost my gestures. Exept for showing thumbs up or down for yes or no, I cannot do any other gesture to indicate my intentions. Oh, yeah there is also another movement I do quite often: bringing my hands together infront of me and circling them around each other. Whatever I want to say I do this circling motion. "What time is it?" Circling. "Water please!" More circling.

The speech therapist gives me a pad and pencil. She wants me to write my name. I write it down. Hoorray! I can write! I can write! Hooray! Then she wants me to write my husband Mehmet's name. But my hand writes my name again. She wants me to write my son Kaan's name. As if somebody else is in command of my hand, my name comes out. This is highly interesting. What ever I try to write, it is always the same: "Banu Turhan".

my story 3

2007-10-08T04:26:00.002-07:00

That whole day both in the ER and also in the ICU, a thought keeps bothering me: What if I go into a coma? I didn't leave any living will behind. In the films you never hear what is going on inside the brains of the patients, only dialogs of the people at her bedside. The patient is always in a sleeping position, serene, oblivious to what's going on around. What if this isn't like it seems? What if the brain is awake, hearing what is said, thinking and feeling? I imagine being stuck inside this body forever. My friends and relatives coming to my bedside, saying "It is so sad! So sad!" All the while me screaming with a silent voice " Hellooo! It is me Banu! Can you hear me? I'm stuck here!! Can anybody help please?"
As the thought passes through my mind, most of all I regret that I didn't leave a will behind and that I didn't leave any letters behind to tell people I love my thoughts about them. Especially my son.

On Monday, I'm happy to learn that my Mom and Kidbrother are coming, the earliest flight they could take. I'm both happy about their coming but also worry a bit about my mom. I'm weary about her me seeing in this condition. I know what it is to see a child sick.

My story 2

2007-10-07T04:37:00.000-07:00

Dear Reader:
It has been almost 14 months since my stroke. It happened on August 19th 2006, on our 10th year wedding aniversary (like a joke). By now I can speak fairly well although a bit clumsy and slowly, people think I have thick accent. I live in Washington DC and my native language is Turkish. But the language doesn't matter because I speak both languages with an "appraxia" accent since the stroke.
As I have re-gained my writing abilities, I wanted to write down everything as fast as I could, while the memory is relatively fresh. I hope to give the patient's perspective to the condition, to be of help to caregivers as much as healers. Also because I'm often told that I made a relatively speedy recovery, my intention is to document everything so that new patients can benefit from the process.
Currently in the US there are approximately 5 700 000 stroke survivors (ASA -2004). It is the third leading cause of death after heart disease and all forms cancer combined, and it is the leading cause of long term disability. Among survivors, 1 in 6 have aphasia (NINSD -2004). The funny thing about aphasia is: your friends and relatives focus on more manifest symptoms of stroke, like paralysis. So you are in real danger of being labeled as “having lost a few marbles…” Although your intellect, your judgment is intact, nobody knows about it. Especially if you are over 60 years old, they say it is Alzheimers. So it is important to make the clear distinction that everybody knows: You can think and judge as before but you are jailed within your own head.

Anyways back to my story:
Since I spoke the words "I can't speak" I hadn't uttered a single word. That night in the ICU, nurses come an go every half hour taking my vitals and doing a quick neurological exam: "Smile, squeeze my hand, lift your foot..."

The right side of my face is paralysed. When the nurses ask me to smile for them, I only smile with the left side of my face. I also feel slightly ashamed as I cannot fulfill their request. At the same time, I'm afraid to also lose my limbs to paralysis, that when they say "Squeeze my hand" I squeeze the nurses' hand with all my strenght. But slowly my right hand becomes weaker and weaker. All night long I go through what-if scenarios. What if I cannot regain the usage of my right hand? How long will it take to learn to write with the left hand? How long to learn to draw/paint?
Of course at that point I have no idea that I also lost my ability to express myself in any other way.

That night I also contemplate my feelings about the whole thing: I don't feel sad at all. It is surprising that I don't feel sad, everybody around me seems to feel that way. You see, I have depression. Although I had no history of depression, when my little son was born, I have experienced post partum depression. That has stuck with me ever since.
So it is highly perplexing not to feel anxiety or sadness, given the overwhelming condition that I'm in. I almost feel giddy. What is going on? I think it must be "shell shock".

Later I'm to find out that a stroke effects the brain almost like strong electroshock. Releasing all kinds of chemicals among which serotonin, that gives the brain that positive feeling.

my story 1

2007-10-06T04:14:00.000-07:00

“I cannot speak!” Those were the last words I uttered. And just like that, I lost my ability to communicate in any shape or form.

I was playing with my three year old son in the living room, helping him solve a Winnie the Pooh puzzle, when I felt something going wrong inside my brain, something terribly wrong. “I cannot speak!” I stood up, ran to the bedroom where my husband was sleeping, holding my hands around my head in a silent scream. He jumped up as soon as he saw the Munch-like expression on my face, tried to calm me down. But a quick exam revealed, my husband is a physician by training, that there was something wrong with my nervous system. I was 39 years old, 115 lbs, in good health, whatever it was it couldn't be too serious, so we drove to the nearest hospital…

As soon as we entered the emergency room it all began: CAT scans –to see if there was blood in my brain, MRIs of my brain and neck, waiting for the right specialist (If possible don’t have an emergency on a weekend - chances are you are a lot less likely to survive), electrodes everywhere on my body, doctors and nurses speaking jargon... I was watching a scene from the TV series ER, with yours truly in the leading role as the patient. My husband was trying to keep me informed as much as he could. Only this time the medical jargon thrown around was far from entertaining. Besides I couldn't understand whether I also lost my ability to comprehend the spoken word or it simply was the terminology used. "Magnetic Resonance Imaging reveals a lateral dissection of the internal carotid artery leading to a thrombosis. We suspect the dissection is a result of cerebral fibromuscular dysplasia." (http://www.fmdsa.org/)
Hellooo? Do you hear me? Could you speak English, please?

In the end it became clear that I had a stroke. The clot-busting medication called tissue plasminogen activator (t-PA), that should dissolve the blockage in the artery didn't work either. My left carotid artery was blocked forever and the brain area responsible from speaking, more commonly known as the Broca’s area, was dead. When I say speaking, I mean communication in any form: I mean writing, drawing, language, gestures, in short any means of expressing oneself …

This is my MRI right there on this picture on the left. As you can see both the left and the right caratid arteries ave dissections, in other words you see that they don't run smoothly as a normal artery should, they have scar tissue. On top on the left artery (it is right on the picture) is blocked.

The name of my newly acquired condition was: Expressive Aphasia. witness to all around me, trying to understand my condition . But at the same time there was an feeling of acceptance, an intellectual curiosity about what would happen next, where this is going to end. I'm not a religious person. Over the years I also lost my faith in a supernatural being. Throughout all that ordeal, especially inside of the MRI machine, where it takes 40 minutes to run an image, I had an odd feeling: "So, this is it then? How very mundane."

After the diagnosis I was transferred from the Emergency Room to Intensive Care Unit, ICU.
It was quieter there.