Wednesday, September 30, 2009

The "re-do"

We start by reading word lists.
For example:
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!

Tuesday, September 29, 2009

We start everything from scratch!

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

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)

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

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.

Tuesday, September 8, 2009

My Mom

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

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.

Monday, September 7, 2009

In both languages

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

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.