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We drove up to the Clinic Sunday afternoon and arrived at the nearby Marriott by 3pm, checked in and sat in the downstairs pub drinking soda until it was almost time for dunner. We did go upstairs -- my suggestion -- for a short while, because I thought Joe might like to rest a bit since he had driven the entire way, without letting Karen take the wheel once (i'm not sure why...Was he out to prove that he was having a great day?). Then we went down to the hotel restaurant, only to find that it was closed on Sunday nights! We quickly made a reservation at a famous seafood restaurant nearby and took the shuttle there that Marriott provides. I ate fried calamari, which, though appetizer size, was so big I couldn't even finish it, and only cost $8.50 (important to me since Joe was paying for everything.) Karen on the other hand, had a $37.00 lobster dinner, I'm not sure why since she knows that Joe is very frugal and doesn't want her to order such things, yet won't say No if she does...so she does. She could have gotten a reasonable and wonderful seafood dinner for $24.00 like Joe did...All of which set the tone of the whole stay for me.
We got back to the hotel and headed up to our room, which we were all sharing, two double beds and a cot. Now Karen is a large woman, with arthritis etc but only 59 years old and she has a very entitled attitude, such that instead of taking the back seat of the car occasionally, and having me pull up the seat so she can extend her legs, she has simply commandeered the front seat every single time, and relegated me to the back, so I'm a second class citizen whenever Joe and Karen and I go anywhere. No doubt she wants it that way. Now, in the hotel, I knew exactly what was expected of me: I was going to sleep on the cot, no question about it. I was not entitled to a bed, not the way Karen was. Joe of course needed a bed and I wouldn't dream of his giving up his. Plus he needs the bipap machine next to him so he needs the double width of the large bed...But he is paying for the room and for everything else during the stay, so even if he weren't ill, he would rate a bed! This whole situation just burns me up. EVERY time we go to a restaurant, Karen has to ask for something different, something to be returned and reheated or changed. At dinner tonight, she felt cold (it was cold, I was freezing, but it was a huge room and obviously difficult to heat, with many windows etc. It was bound to be chilly) so she wanted them to put up the heat in the entire room just so she could be warmer. She didn't mind at all that it would not only cost more but use morre oil and cause more pollution. She feels entitled to Queen Everyday service everywhere, and will demand it if she doesn't get it.
Anyhow, back to the Clinic, when we got there, Karen and Joe warned me the room might be tiny, implying that there might be room for only two and I was wondering if I had the nerve to insist that I go in with Joe, since I was better at taking notes than Karen with her dyslexia, when we were told it was a larger room with two extra chairs. Phew!
After a very short wait, the therapists started arriving one by one, sequentially. First the Massachusetts chapter of the ALS Association head, MB with whom I had corrresponded by e-mail trying to straighten things out for Joe. Then, in no order, the physical therapist did some tests to determine the strength of Joe's muscles. The respiratory therapist measured his FVC -- forced vital capapcity or essentially his ability to move air, to breathe, as well as his CO2 and O2 levels. The nutritionist talked to him about his weight and about use of the feeding tube when he didn't feel like eating, or was too tired to eat, as he was twice this past week. Then the speech pathologist came in to talk with him about "augmentative assistive communication" or AAC devices, which Joe had been turning up his nose at every time I brought up the subject and I had not been able to figure out why.
To explain: these AAC devices are "speaking machines," you press a button either with a picture on it or with a preprogrammed sentence attached to a keystroke or series of them and the machine speaks the word or phrase. Many are small and handheld, while some look like small computer keyboards and need a flat surface upon which to type. Joe already has a laptop (which he is scared to use or reluctant to) and I found him a wonderful text to speech program with great voices, best we have found yet, much much better than the AAC device voices, but you can't take your laptop to, say, the grocery store or bank or post office, and there he'd need some other way to communicate basic needs. He wanted to use index cards with sentences written on them. Which is fine. But by the time we started talking more about AAC devices, he was saying that the index cards were just a way of keeping track of phrases he wanted to put on the device itself! That of course is a load of BS. He simply was changing his mind about the AAC devices. But I allowed him to save face and have it his way. Still I need to encourage him to use the laptop, maybe buy the text to speech program now that the 30day trial is over, and start practicing using it with me over the phone.
Anyhow, the results of all the tests were actually not as bad as both Karen and I (and I think Joe, at least Joe of three days ago) anticipated. He has gotten worse, but only by a small amount. His breathing has remained stable and his daytime CO2 and O2 are normal. It seemed like his arms and legs were still strong, but his right hand is weaker than his left, indicating some deterioration there, since he is right-handed, and the right hand in that case should be stronger than the left. Also his right foot and ankle are weak enough to potentially start to trip him if he doesn't think about planting his foot heel-first on the ground. If it gets a lot weaker, they will make him a simple molded brace that he will wear inside his shoe and under his pants to add support to the weakened joint and keep him from tripping over his own foot. Whether he will be able to drive at that point I don't know, nor if his car can be adapted with hand controls, or how difficult that sort of thing is. I know he will find giving up driving devastating, but it looks like that is still a long ways down the pike at this point, which is great. The biggest problem right now, though, remains his voice, which is noticeably getting worse, though today it was stronger than it has been. He needs to start using an AAC device to master the learning curve early rather than late, as the neurologist himself urged.
So with that in mind, he has an appointment to go back to the Clinic next week, on Monday- Tuesday the 19th to be evaluated for which device best suits him before he either rents one, borrows one, or purchases one with the help of Medicare. I have an appointment with Dr O on the 20th, which Karen said she would drive me to, assuming that Joe would not be able to (I have told him I don't want him to drive me any more because he should be saving his energy for the Science and Engineering Club that he helps run later on that day at the local community college.) On the 20th though, I was saving my last ten minutes for Joe, to have Dr O explain the results of his two sleep studies, the one without the breathing machine and the one he just had with it. So either he or Karen can drive that day, because both will be coming in case Joe can't drive. If he can, then I'd just as soon Karen didn't come, as I don't want her in my session. Then again, maybe it would be good if Dr O got to meet her! BD
Okay, it is well after midnight and I ought to be extremely tired, though why, I don't know. I've just been sitting for two days, doing nothing for the most part, except taking notes during Joe's 4 hour appointment. But I need to go to bed anyway, because the visiting nurse will be here in the morning as usual, so I'll have to get up whether I want to or not.
Will write more tomorrow, or if this appears on Tuesday's page, perhaps more today.
TTFN BDPosted by pamwagg at December 11, 2006 11:34 PM