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debbieh

New member
Joined
Oct 15, 2007
Messages
4
Reason
Loved one DX
Country
UK
State
Middlesex
City
Enfield
Hi All,

My dad has had noticable physical symptoms since May 07 and has progressed rapidly. He no longer has much use of arms or legs and can just manage to alter the position of his recliner, but cannot turn over the television or operate his bed controls. He can still speak but is losing volume, has quite a good appetite and attitude generally. He has had 3 episodes of passing small kidney stones, which I have deduced is down to calcium in his bones leaking into his blood and urine because he can no longer weight bear. His leg bones are really pronounced now, with very little fat or muscle, and I am becoming worried about them breaking. He stays in bed a lot of the time but uses a hoist and commode chair for showering and toileting, and I am worried that as careful as I am, I might break his legs whilst moving him. The hospice nurse who visits was saying did he use his recliner chair any more as he was in bed last time she came. She was asking if his "bottom bones" were broken. Has anyone actually experienced broken bones in a non weight bearing als sufferer? Perhaps you can all put my mind at rest and tell me this hasn't happened, as my dad still has no major breathing or swallowing difficulties, and I am worried that he will go on so long that this could happen, and I dont think I could bear for him to have broken bones on top of all he is enduring.

Thanks,

Debbie
 
Hi debbieh!

Sorry about your Dad.

I have no input on the problem of broken bones in a situation like this. Perhaps someone else that has experience with the elderly and ALS can offer some advice.

Wishing you strength.
 
I know it would be difficult but a doctor my mother saw said that elderly have more bone problems because they rarely get out in the sun. He was specifically referring to people in assisted living and nursing homes. He said even a few minutes a day in sunlight was very helpful in maintaining bone strength.

Those of us at home who can get out need to remember to take a few minutes a day to get some sunlight.

Sharonca
 
Hi Debbie. Did the nurse say why she suspected your dad has broken bones? I would think he would be in a LOT of pain if this were the case.
 
Hello Debbie,
I'm so sorry about your dad. On top of everything else passing the kidney stones must be very painful.
Here's a link to an inservice for Staff Instructors entitled "Care of the ALS Patient" on the living-with-als.org site. It's written by a retired RN who was diagnosed with ALS. Go down almost to the bottom of the page under "Positioning" where she talks about recliners. She says, "A recliner is probably the worst choice for seating. Few have adjustable seat depth or armrests (which are generally too low)."
http://living-with-als.org/Diane/read.html
All the best to you and your dad. There are many others going with you on this devastating journey. Thank goodness we can keep in touch and help each other via this forum.
Jane
 
Thanks for your replies. I am giving my dad vitamin D supplements as he isn't able to get out very much these days. We haven't had much sun here for the past few months either.

The nurse is very pleasant, but she kind of makes a joke of things to keep it light hearted and the conversation quickly moved on when I told her that dad didn't have broken bones.

Any more replies, greatly appreciated.

Debbie
 
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