Friends 2

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

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

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

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!

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

8 days after the stroke

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?

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:

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

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

further on understanding the written word

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

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/:

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

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.