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I Don't Know What Happened!



Yesterday I wrote one of my long blogs. I don't know what happened to it! Maybe I didn't include a title so it went into the land fill of untitled blogs....It's so hard to even remember yesterday, let alone what I must have written. Oh well, I guess the therapy is in the writing, not necessarily the remembrance of the content. Maybe writing is a way of letting go - now that is a good thing.


I know I reflected in the fact that it's been almost a month since I've blogged. And of course, when one doesn't blog the blog quickly disappears from the blog board - is that even the term? Anyway, life has been busy as always. We haven't had as many doctor's appointments though. Now that, too, is a good thing in the world of stroke recovery. Of course, two years out I guess it is to be expected that the survivor is no longer a victim to be hovered over, but a survivor who is expected to continue the recovery path. Expectations are good things too.


The VA, in all their wisdom, decided to change Alzheimers medications from Aricept (Donepezil) to Reminyl (Galantamine). Now, let's be honest. The VA is going to make their purchases based upon contract. The patient is NOT necessarily the first consideration - forgive me any of you who swear by the VA's medical community, I respectfully disagree. We received a phone call advising us of the change. I was hesitant, primarily because in the switch Bill would need to once again work up to the maintenance dose, which means taking 1/2 dose for a month before moving to the full dose. Bill's mental status has been so good. We've actually been able to carry on some good conversations, Bill has been able to remember what day it is, the month and even the year. He's been able to make decisions like where he'd like to eat, what he'd like to wear, realize he needs to shave and shower before he gets dressed to go out. These may seem like simple decisions, but before he started Aricept and then Namenda was added they were decisions he was unable to make. There was no meaningful conversation. His thoughts were scattered. He would begin a sentence and be unable to finish it. I hated the thought of possibly returning to those days.


When Bill had his quarterly exam with his neurologist (the stroke specialist in the area who EVERYBODY who has a stroke is referred to) he assured me it would be fine to change Bill to the Reminyl because the medications are basically the same. Well folks, have I got news for you. They are not the same. Or maybe it's because the medication has been cut in half. Even though Bill is taking Namenda he now asks what we need to do next. He can't make a decision. He can't process that he needs to bathe before he gets ready to go out. He doesn't converse. He's back to the blaQnk gaze much of the time. But hey, the VA knows what they are doing. And the neurologist doesn't think there's any difference. Well, I'll wait until he's back up to the maintenance dose I guess, but I'd like those folks to become caregiver for a month and then tell me there is no difference. Frankly, I should have used my own judgement. At least then I'd have part of my husband back again.


We finally had the evaluation by Bill's disability company's nurse Thursday. Bill has been on disability through the Presbyterian Church for several years before his strokes. The poor guy suffered from bipolar disease for a long time after his tour in Vietnam. His disease took over for a time. Since his strokes though, the folks who manage the disability have had concerns that his medical condition should be taking priority now and in order to reflect that need it was necessary for us to have an in-home evaluation. It was really a very good thing. She is going to recommend some specific stroke rehab for Bill. She is also going to recommend some respit time for me. Apparently his disability will pay for these things so we'll be waiting to hear. She feels, as I, that Bill could benefit from stroke specific OT. He can use his arm, it's the fine motor skills that are the issue. She said she has not been impressed with the rehab Bill had and he's not the first she has had issues with. I showed her the Parrot Software I'm using with Bill now to work on cognitive skills and she was just really impressed with it. She had not seen it before and she was going to go home and do some more research. I'm wondering if they will pay the subscription for it? We'll see.


It's a funny thing. Saturday....the morning of the week I love to sleep in...and the one morning of the week Bill awakens at 6 a.m. I wish I understood why. He wants a cup of coffee which he can't make. Then he takes his meds and eats breakfast. Then, about 8:30, after I'm well up and awake. He decides he wants to go back to bed to sleep. I wish I knew the message therein!!!! Or maybe I don't want to know!


So - it is now 9:50 a.m. and my eyes are stinging. I think it's time for me to go crawl in bed for an hour or so, too!







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maybe your blog is still in draft form, you should check your blogs, sometime if you don't publish it then it stays in draft form which is in the shade of pink, though with new color, I m not able to see pink shady color. BTW have u looked into getting those medicines from internet at cheaper price, I used to get my expensive anti depression medicine from India.




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Ann, I'm so sorry you didn't get your time sleeping later. Going back after being up and "working" just isn't the same.


I know about places like the VA and HMO's. yes, Dr's are businesses too but the former ones are REALLY businesses that look for the cheapest way. They then try to point out how goood it is for whatever reason. I know that people in HMO's don't get the chance for acute rehabs, simply because they wil not pay the fee. The same is true with the rehabs they use. They apparently do not pay the top salary to the therapists and they in turn go where they can make more. So, when they tell you, they are giving you medicine, you are not gettin the best, although they perhaps would say you needed the top brands and you could pay a co-pay. I had a friend who used to follow her Dr. around if he'd change HMO's and he always saw that she got the top meds. She, in turn gave him a very nice bottle of wine at Christmas........... As Asha said, she gets meds from India. Canada isn't supposed to send meds to the US but people are asked what country they will accept meds from such as GB, Australia, Germany etc. My dog gets her flea preventative and heart worm prevention through Canada and it comes from Australia and New Zealand. Same stuff as from US. It's a shame that we must do things like this. Part D is a disgrace and HMO's and the VA are worse.

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Anne make sure you document any changes in Bill's behavior or health. You can go in and request that he be put back on Aricept. You can often get the Dr to overiride and he will get the medication that is working for best for him.



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