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Any Input?

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Okay, I would like some input from my fellow caregivers. First, however, I need to explain a little more what is going on. As you all know my husband has a serious neurological disease. Recently I have started to need to help him every time he goes to the bathroom, and I also help him with most other transfers. His disease affects balance, motor planning, speech, small motor, and on and on. Recently I hired a lady to come in two times a week for an hour to help him take care of his bathroom needs before bedtime, to help him shower, and get him into bed. That is working out great so far. This gal is very efficient and is doing a great job.

Physical therapy is a very good thing for people with neurological diseases. It does help to slow down the progress of the disease. Several months back we started working with a physical trainer. She works independently but works in the back of my chiropractor’s office. I feel she has done a lot of good for my husband. We pay for these services. In June we also recently started doing Medicare paid physical therapy. These therapists come right to the house and work with Wayne. They come for an hour on Monday and Wed. I am also happy with their services. My husband’s disease is very powerful, however, and it is slowly seeming to win this fight.

Yesterday we went to the physical trainer that we go out to on Wed. Everything went fairly well, but when we got to the car, Wayne seemed to have some motor planning issues. Hence, I could not get him to stand, so I could help maneuver him into the car. The upshot of this was that it took the extra help of the physical trainer and another employee to get him into the car. I usually do this by myself. I do not know what his issue was yesterday be it a motor planning issue or fatigue or what. He told me later that his legs always feel rubbery after working with the Wed. trainer.

Okay, I would like some input from my fellow caregivers. I would like to keep this Wed session going, because eventually Medicare could cut out, if we can not prove Wayne is making progress through regular physical therapy. Then we would be left with nothing. I also do not want to do something which is unsafe, however, while trying to help him. Do I keep doing this Wed physical training going for awhile, and if we have a problem again then stop it? Or do I stop it now? Another factor is that I exercise with Wayne on Wed, and I think it has been very good for me. So I suppose another option would be for me to go alone on Wed with Wayne abstaining on Wed for now, and then being able to plug him in later again if his Medicare paid therapy stops. I am really torn about this. Any input?

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Comments

  1. Francine

    August 5, 2010

    Sharon- I’m sure this is a very frustrating experience for you, but in all honesty – I think this is something that you should discuss with your husband’s doctor!

  2. Denise

    August 5, 2010

    Hi Sharon–I am following along the lines of Francine’s thought. I also think you need more information. My suggestion would be to speak with trainer and let her know how Wayne feels after the exercise. What adjustments can she make during the exercises? What suggestions can she offer that can help Wayne after the exercises? For instance, would it help for you both to rest a bit in the office before heading to the car?

    I often think the best decision lies in a compromise.

    I hope this helps! And, please keep us posted. :)

  3. Karen

    August 5, 2010

    Hi Sharon–I am going to add my “ditto”. I would recommend a frank discussion with the Wednesday trainer about making some adjustments to your husband’s therapy. When my mother was learning to use her prosthesis, I took her out to physical therapy for quite a long time. The trainer re-adjusted not only what they did, but the length and frequency of sessions, depending upon Mom’s level of stress, exertion, stamina and so on. I would definitely try for a compromise if at all possible.

  4. Donna Ryan

    August 6, 2010

    Hi Sharon…I dont want to keep repeating however I do agree with everyones suggestion….I would most definately discuss this concern with the trainer or your doctor
    I would also add however you mentioned you enjoyed the exercize on wednesdays and I hope despite the decision for Wayne to attend that session that you continue that….it is something you are doing good for you:) keep us posted ok?

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