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Not gonna let him loose it!



Mike has been so tired here lately he doesn't even get out of bed and he is ready to go back! We have asked the doctor to prescribe him something for energy but he just doesn't seem to care. Now we are in the process of trying to find him a new doctor that has more of an insight to what might be best for him so while we are waiting for this transition he is just going down hill even more. He has lost 5 more pounds and has almost stopped eating again. Therefore I have decided that instead of letting him loose everything he has gained in the past few months I am going to start splinting his elbow and hand in order to stop the process of the muscles from loosing the length they have gained from his therapy. Even if he doesn't feel like exercising them he can keep the length and only loose the strength, which isn't very much anyway. The therapist told me when he first started going that if he had been splinted properly in the beginning he would only have had to gain strength and could have been much further along in his recovery of the use of his arm and hand by now. So guess it's back to square one with the strength but not the length if I can help it!!!!


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OK, here is what my doctors did for me. They ordered Boost and Ensure by the cases. I was loosing weight too. Now they say it worked just stay with the ensure a can a day for a bit longer until the eating habit returns fully.


For arm/hand strength I use the 2 pound hand weight and the over the door pulley for my shoulders and all that works for me. I got another gadget I can stand up with both feet on it and push down on it for my chest muscles and strengthen the body.


Now if he refuses I don't know what you can do, you can't divorce him because you love him too much so talk him into getting better or no more sex, that'll wake him up I bet.


Don't let him give up!

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Cindie, I was just about to do a blog on Larry when I read yours. We have similar uphill battles with our spouses. I wish you the best and hope you find a good doctor.



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Cat, they are not going to stay awake, they just don't have the brain power to stay focused for any long time. Bob gets up between 10-11am, eats breakfast

if therapy day, gone from 1-3

stop and by lunch at drive thru on way home

to nap for around 4 hours

up around 7-8pm, till 11-12pm

-I would say he sleeps 2/3 of the time. It is not a lack of energy, it's the brain that is just operating on a small percentage that can no longer use the little it has to do everything the whole brain used to do - it is exhausted. It's like having one window air conditioner in a small bedroom, but then taking it out and putting it in a warehouse - it is going to burn out because it handle all that load.


Bob had a weird stomach recently and I got the walmart ensure plus (don't buy the diet version!) It is their equate version. I can drink it anyway, since I've used it for years, but someone just starting on it, might be picky. So, it's best if cold from the fridge and drank with a straw.


Tell me what the doctor calls 'splinting properly'.

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and since sandy mentioned it -- straws lots of drinks even on the rare occasssion dan has a beer -- it is through a straw... likes it cold but NO ICE..

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Cindy: I agree with Nancy - depression. Bruce had a new PCP this January and she upped his Paxil. Finally some response. We have to tweak, re-eval and tweak yet again. Bruce was actually hoping she would stop the antidepressant.


Bruce has been in splints since day one. Arm-hand is the last to come back. He had a sling until we got home-eight weeks and home OT said get him out of it. We do the overnight arm splint every single night. There is nothing coming back on Bruce's arm-hand, so it is just one thing that must be done to avoid contracture. As to the leg, AFO from the time he gets out of bed in the morning until bed time. Bruce's foot will roll onto the side it not in it. And he must walk every day.


We found out, this latest round of therapy which Bruce requested, that yes, Bruce lost a lot of what the PT had worked so hard on last year, because Bruce did not keep up his work. Cindy, we are 4 1/2 years post and finally Bruce seems to be on board - at least six weeks into this.


Bruce is a farmer. He is up at 4:30am. Slow to wake up, so that allows me another 2 hours, but then it is into the BR, clothing change, wash up for the day. Bruce is now doing his breakfast, packing mine and feeding Kira, newspaper, Estim. And yes, after lunch he is ready for down time and a good hour nap. But then to bed by 7pm. He'll channel surf for a bit. But I have to medicate him around 10pm and I always have to wake him up. He'll pet Kira and watch the news for a half hour, but is out for the night after that. And Cindy, I don't think he sleeps enough! Many mornings I get up and he is asleep in his WC. But cognitively, he is right on, so finally I know now, it is all physical exhaustion.


You make the best decisions you can at the time and what you are seeing and dealing with. There is no right or wrong, only reaction to what is going on right now. Debbie

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Sandy, When Mike first came home from the hospital he had such an idiot for an OT that she had us order him a splint for his hand and arm that was suppose to help with his spasticity but it hurt so bad when he tried to wear it that he eventually stopped. The therapist that he was seeing this past time looked at it and said no wonder he couldn't wear it she had it at the wrong level for the length of his muscles. She had it where it bent his wrist upward and his fingers up and flat out. He kept telling her that it hurt to wear it but she insisted there was nothing she could do about it! According to the new OT she should have started out with a slight incline in the wrist and some curve to the fingers and gradually changed its shape. Hope that answers your question.

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I think the best splint for Bob would have been to splint it for some hours (not around the clock) everyday, in a flat hand splint. THEN, his hand was not drawn into a fist yet. THEN, it could be manipulated easily. But waiting till it was a tight fist, and THEN trying to pull it back out is just cruel idiocy on all their part, if you ask me. They KNOW it is going to happen, and should be doing damage control before it even starts. I remember seeing one lady in a stroke ward that was knew there, and in a flat splint, but the only one, and wondered about it. I think she was the only one getting what was the right thing. Do not mistake me for saying that I think it should be locked in that position all day and night. No, but if it never is in that position, it loses the ability to get there. :( Still mad about it.

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