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Libbyc

New member
Joined
Jun 14, 2018
Messages
8
Reason
CALS
Diagnosis
05/2018
Country
US
State
Oregon
City
Portland
My dear friend has been in ICU for roughly two months as we negotiate all the issues with finding care and housing for him, but we are almost there. He has been understandably depressed, but hesitant to try new things to help improve his mood. He has lost the ability to use his hands and lower arms, so writing and guitar, two of his sources of happiness, are impossible. He hopes to be able to write with the help of a eye-tracking tablet, but that hasn't arrived yet.

His fondest activity, and probably a huge source of strength, serenity, and peace is long-distance bike riding. Prior to any symptoms, he was a bike courier, even at 65. Now being vented, or at least on a bipap 24 hours a day, he assumed his biking days were behind him. Last week, however, PT arrived with a set of mobile foot pedals. A readjustment of the hospital bed and a tweak of the pedal resistance, and C was at it. I feel so lucky that I witnessed such joy. Just in the simple action of pedaling, without a bike or even wheels. It was as if he wasn't in ICU, or even indoors. To watch hope blossom and grow in someone who tries to be strong every day was a moment I will never forget. (I'm now looking into some kind of recumbent trike for his eventual release! Who knows what's possible?!)

Just wanted to share my gratitude and happiness with you all.
 
That's really outstanding news. I am so glad your friend was able to get his feet on some pedals again and I sincerely hope you find some options for a trike when your friend is in supportive housing. I look forward to knowing what options you find! Last I was in Portland I saw what appeared to be a multiple person moving hipser bar, complete with kegs, whizz by with all participants furiously pedaling, so a single person recumbent trike with space for a portable vent should not be impossible.
 
Hi Libby,

Writing and guitar playing/composition with a synthetic, eye-driven instrument (and/or for those able, via voice commands/dictation) are both very possible. Don't forget automatic page-turning software for reading (Voice Dream or audiobooks). See Jason Becker's pages for the eye gaze example.

Best,
Laurie
 
The trike is a great idea. My PALS used a big Motomed foot pedal thingy for some time (sitting in his manual wheelchair by the window listening to very loud music). It has a motor so workout can be active, assisted or passive. It helps with all kinds of ailments stemming from paralysis including digestion. Not a bad indoor solution.

If his feet still work fine, I read that there are foot mice for computers.
 
How wonderful! One never knows what blessings may be waiting tomorrow. May hope lift his spirit. B.
 

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I am recently diagnosed with ALS. When I would ask ppl about exercising, I was cautioned to not tire myself out. It wasn't until physical therapy where I realized in speaking with the therapist that exercise was good even if I could not see the result but could fee the muscle move ever so slightly.

I am now sitting up in bed and both my legs have shown mark improvement.

please please let you friend not NOT TO GIVE UP HOPE and get regular exercise program even if just to give friend something to do as goal attainment.

This is my first post
DancingBoy
AKA ALA Princess
 
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