Recent content by The Younger Sister

Wow, Steve. Your post was so great. I wish I had your responses a few months ago. I watched YouTube to see how to change out the batteries (and switch the positive and negative cables). The chair powered up, but did not move (had a 1505 right brake error). I changed out the fuse (thank you...

Hi! Has anyone put in replacement batteries for a Permobil wheelchair? Do you need to have a technician called or can you do it yourself? Thanks so much!!!

Hi - I have not posted much on my sister for several months....I wanted to wait till after she had her neurologist appointment in late March. In brief, my sister's condition has slowly declined over years to the point that she had no motor use in her legs, was unable to hold a glass, read a...

Hello. My sister had terrible itching, so bad that she could hardly sleep. Even though she could hardly move her arms/hands, she scratched herself everywhere she could and was getting lots of open sores. Long story short....she tried all types of topical and oral medication with limited relief...

My sister's CK levels have been very high (387 in 2015, 311 in 2015, etc.) and her progression has been very slow relative to the literature that I have read. However, her motor function has steadily declined. It started in her lower extremities and she is no longer able to walk or stand. Over...

Hi All - Here is where the Clinical Trials.gov Phase 3 AMX0035 clinical trial details are (just cut and paste in your browser): Phase III Trial of AMX0035 for Amyotrophic Lateral Sclerosis Treatment - Full Text View - ClinicalTrials.gov Also, here is the AMX0035 Phase 2 study with the...

Hi lgelb and affected - It is really, really interesting to me, also. My sister never had any abnormal results on her routine screening. The only abnormal finding was a slightly. higher than normal ALT (i.e., her alkaline phosphatase, which is more likely with any kind of cholestasis, was...

Hi All - It has been awhile since I posted anything, although I read other's posts often and have received great advice. My sister's motor neuron progression has been significant over the past year. She is no longer able to stand or move her legs, and her arms/hands are very weak (e.g., she can...

Hi Mon - My sister developed dependent edema/swelling in her legs as she progressed and was no longer able to move them. Keeping her legs elevated (at about 45 degree angle) when she sits in her chair during the day definitely helped to decrease the swelling tremendously. In addition to the...

Wow!! This looks amazing! Just beautiful!!

Hi Jon - I saw this post last week and have been thinking about it a lot. Just the fact that someone would do this for someone else is so amazing. It is almost like I want to believe that Santa Claus is real again. You are so kind to even dream this idea up. From my perspective (acknowledging...

Adding my heartfelt thanks to the moderators on this site, and to everyone here for their advice, wisdom and kindness.

This site changed everything for me today...miracles can happen. We now have a power wheel chair for my sister....emotional to see my sister's happiness to being independently mobile. No way to repay my gratitude...but I will try. My grandchildren love country music and came for dinner...

Thank you to everyone. This advice is so very helpful. :)

HI Laurie - Thank you for your kind response. My sister FINALLY agreed that she needed a power wheelchair and her neurologist said it would be a game changer for her. She was so looking forward to this as a way to provide just a little independence in this awful disease. I really don't know how...