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:
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.

1 comment:

The Aphasia Decoder.... said...

Best of luck to you in the aphasia program. I'm looking forward to reading how it went for you.