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.
Wednesday, October 7, 2009
Thursday, October 1, 2009
Mehmet’s dad helps me
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.
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.
Wednesday, September 30, 2009
The "re-do"
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!
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!
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.
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.
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!
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.
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.
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.
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.
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.
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.
Friday, August 28, 2009
We are headed home
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)
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)
Saturday, August 22, 2009
A few more tips
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.
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.
Thursday, August 20, 2009
A few tips
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/
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/
Tuesday, August 18, 2009
Further in Michigan
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?”
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?”
Friday, August 14, 2009
Making progress
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.
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.
Wednesday, August 12, 2009
Kaan is having the time of his life:
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.
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.
Wednesday, March 11, 2009
End of second week in Michigan
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
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
Monday, March 9, 2009
October 2, 2006
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.
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
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.
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
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
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
Monday, March 2, 2009
some words of wisdom
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.
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.
Saturday, February 28, 2009
September Tuesday 28, 2006
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.
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.
Thursday, February 26, 2009
We are heading off to Michigan
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.
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
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.”
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.”
Wednesday, February 11, 2009
My son and my husband
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.
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.
Tuesday, February 10, 2009
Drawing
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.
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.
Thursday, February 5, 2009
international friends
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.
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.
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