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Bud son of ma

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My 78 year old mom has been recently diagnosed with ALS. We saw some symtoms last October and now she is confined to a wheel chair. She has no use of her legs, some swallowing and breathing issues but the biggest issue is sleeping. I know it's common from reading some threads but her issue hasn't been mentioned. Her legs fall off to the sides (pronates) and this causes pressure on her knees. If we buffer her with pillows, they become irraitating quickly. One night some configuration of pillows, pads, foam etc work, than the next night the same thing is torture. Any thoughts on how to keep her feet pointing up and not leaning off to the side.
Any help will be appriciated
Bud
 

TBear

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Hi Bud:
I'm not sure that I have the picture right, but I think that if you could get her to lie on her side to sleep and place a pillow between her knees, that might help.
Good Luck

T.
 

Al

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I talked to a lady once that had made a box out of plumbing pipe and the plumbing glue to keep the covers off her husbands feet. They would irritate him. Would something similar with soft cloth on the sides help. This might only work if she sleeps on her back only and doesn't move around much. If she has cold feet you could sew a piece of material to the bottom of her socks to keep her feet together. Sorry you're here Bud but we'll try to come up with some ideas for you.
 

Jane

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Hello Bud: This works for cold feet and just might help with your Mom's problem . Take a sheet folded in quarters, lay it flat under feet with Mom's feet about in the middle.
Fold the bottom end up and over feet, then tuck sides under. It keeps the the feet wrapped and it should hold them from falling to the sides.. If cover weight is a problem. cut a piece of plywood in a semi circle and put it between the matress and the end of the bed. Covers will go over it and keep weight off feet.
Hope this will be of some help to you Jane
 

Bud son of ma

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Wow, Three replies in one day. You folks are great; so kind in your concern and generous with ideas.
I just had two nasty nights with her, complete with hallucinations and extreme discomfort. She is very sensitive to things touching her. Pillows might work for a few hours but then I come in the room and she’s thrown them to the floor. She has so little strength that there’s no way to get her on her side. It’s very uncomfortable when I’m rolling her to get the sling out from under her.
I’m playing with an idea based on the last two posts. Maybe build the PCV thing and have a sling made out of silk or something lightweight hang down and around her feet. It might even give her the feeling of more freedom. More likely she’ll love it for two nights and then claim it’s the worse thing ever invented on the third night. Always the adventure.
Thank you again
Bud
 

Al

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That's about all you can do Bud. Keep trying different things until something works. Someone else may have some ideas in the meantime.
 

mannco74

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keeping feet happy

my local als society gave me a little metal frame to keep sheets/blankets of. works.. good luck.

nd hound
 

Carol Deboer

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Hi there and welcome to our group,

I know that you will find the support and help that you need here. We have all been there or are there or on our way there. Modifying day after day is so exhausting, I know. However, you only want the best for your Mom, and keeping her comfortable will be an all consuming thing now. Henry also could not stand the cover weight on his legs and feet. We made a little stand to lay the covers over so they would not irritate him at night. I agree with Ted, lay her on her side and place a pillow between her legs. This is really helpful for legs that drop. We used pillows and soft foam pads and sheepskin to prop Henrys legs at night, we massaged them and did leg lifts for him to help keep them supple and loose. I would also use heel cups to help stop his pressure points on his feet. This a hit or miss thing. I know that some things would work here for a time, and then bam, we had to modify again. It is something that you will get used to doing. Your focus is your Mom, and she will guide you through her discomfort and help you to understand how to help her. I hope that you are doing okay and getting enough rest. I know that it is almost an impossible feat, but, I know from experience that you have to have proper rest in order to maintain. I would get sleep some nights and some nights not. But, my main focus always was to keep Henry as comfortable as possilbe. Good luck to you. I am sure that you will come up with some homemade concoction to help her out. We always did. You will beccome very creative and very savvy with your experiments. Again, welcome, and if you ever need anything do not hesitate to ask anyone of us for help. We will be here for you.

Stay Strong,

Carol xo
 

Bud son of ma

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First vacation in serveral years

Hey all. Thanks for your support. My brothers will take over care for the next few days as I leave for my first vacation in 3 years. I'll reconnect next Sat.
Thanks
Bud
 
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