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Mary Helen Barr

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Of my family, I do the most caretaking of my father. I do a pivot transfer to move him from place to place. The only time he really has to stand and stay standing is when I clean him up after using the toilet. Even though he is putting weight on his legs, he has to lean on a towel bar and walker, and I have to use my body to help hold him up, only giving me one hand to do what I need to do to clean him up. (really should be a 2 person job, but it's just me). I often have to sit him back down on the toilet to rest, and stand him up again several times, especially when he has diarrhea (like now). Anyway, is it trunk weakness that makes him bend so far forward? Does trunk weakness lead to bulbar symptoms? He doesn't seem to have bulbar symptoms, even though his head hangs. Any breathing difficulty is due to his airway being closed by his hanging head. When I tie his head back on his wheelchair (a little invention of ours), he doesn't have trouble breathing. I guess I'm just wondering about his "trunk"--he seems to curl forward while standing. His progression is pretty slow, but I was just wondering about other patients and that area of their bodies. MH
 

CindyM

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Hi Mary Helen. I am sorry that your Dad has this horrible disease and sorry for all you and your family are going through. He is lucky to have such a wonderful and caring daughter and I am sure you will never regret the love and attention you are showing him in his time of need.

You are right about the task at hand being a 2-person job. But professional caregivers have tricks of the trade not known to the rest of us. Perhaps your ALS clinic or your local MD chapter can offer some tips on how to transfer your Dad while providing personal care. They may also offer additional (often free or low cost) help if you are not already getting this. Seems like a home-health aide might be in order.

Last thing: if you do a search at the top of this screen you might find ideas on braces that help people with weak trunk and neck muscles. At any rate, let us know how this works out for you and your Dad. Often the best advice comes from folks who have "been there." Cindy
 

Al

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Hi Mary Helen. I have a shower commode chair that was given to me by a friend that's husband passed away due to ALS. It is adjustable for height and when this becomes an issue for us for wiping I'll be high enough that it can be done fairly easily. Is your chair height adjustable? As the muscles get weaker we do tend to fall in the direction of least resistance which is usually forward.
AL.
 

terri

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Jul 7, 2005
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toilet

Hi Mary Helen,

I use a lift to move LB from his chair to the toilet and back to his chair. It's pretty easy when using the Hoyer. We have a U-sling (split leg) which leaves his bottom completely exposed so it pretty easy to clean him plus he is secure in sling and I don't have to worry about him falling over.

I hope you find a solution soon. Good luck.

terri
 
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