Friday, March 13, 2009

Reader comments and answers

===If you are looking for my FDA related post, please scroll down...===

Hi All, I sometimes receive comments related to this blog via email. When I do this and there's some potential to help multiple people I ask the person that emailed me if I can post their note to the blog and answer their question publicly so that others might benefit. Here is one such note from a Mom caregiver.
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I, for one, am ALWAYS looking for more that Bill writes. It's amazing how he says what we are thinking, and puts in writing what REALLY goes on at home. Thank you so much, Bill.
Does anyone have ideas for steps in a house? My PAL is my 31 year old daughter that refuses to go to a house other than the one that she and Justin knew was their home forever. 8 steps from their bedroom/bathroom to the living room.
Thanks for any advice, I didn't know where else to turn. We took Bill's advice on the wheel chair, and it is wonderful!!!! Almost like part of her can go and do with little effort.Boo
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Boo,
I carry H around the house and up and down the stairs to our bedroom, but about 6 or 8 months ago I injured my back and we found ourselves in a difficult position for several days. We don't have a bedroom or a bathroom with a shower or tub on the main floor of the house. We had some strong friends carry H in my stead for a few days, but as a result of this and recognizing that there might be times when I either could not do it or might have to be away, we installed a chairlift. We had a company come out and quote our two staircases. The stairs going up would have been the most useful for us since our bedroom is up there, but the quote was $13,000.00 because of a curve in the steps. The basement stairs, where we have a guestroom and bathroom with a shower are straight, so the quote was $3500.00, a massive difference. So, we bought and installed the lift to the downstairs.

Since then, I have heard that the local ALS association sometimes receives these lifts as donations and will allow PALS families to have them as long as they pay for installation, which is generally between $500 and $1000 depending on the length. You might contact your local ALS Association or Muscular Dystrophy Association to see if they have one that you can install on loan.

I recognize that all PALS probably can't use this type of lift because it does require some trunk strength to ride, and also transferring can be an issue. Since we have not had to go down this road yet, I can't offer any guidance there, but if anyone knows how to manage this, please post a comment to this blog for others to use. Thanks for your question. I hope this helps.
Peace,
B.

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