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I Have SMA Type 3 And Have A Torn Rotator Cuff. I Am Wondering If Anyone Has Dealt With This Specific Injury While Also Having SMA?
Working at it in PT now. Getting some relief ππ». I was just curious if anyone had some quick fixes π€£. Unfortunately I think this will just be a long term thing Iβm dealing with.
Thinking About SMA, What Are You Glad You've Done Over The Years, And What Do You Wish You Could Have Done Differently?
I wish I would have pursued a different career path. I wasted to much of my time and energy at a job that I wasn't appreciated at for the sake of making money and paying bills.
Ataxia Telangiectasia (AT)
Hi, does someone in the team has an idea about ataxia telangiectasia. Itβs a rare neuro degenerative disease and not curable for the moment. I would like to know if there are any studies or tests in course. Iβm personally following a young bit from Vietnam since 7 years. He 14 now. When I first saw him he was running and enjoying. Today heβs bed ridden and needs assistance for everything. Thank you
Thank you Lisa
Name The One Thing You Find Most Challenging About SMA.
SMA is very frustrating as we become more and more limited. I miss walking.
What Exactly Is SMA? I Am 61. HAD AN L-5/S-1 Fusion When I Was 43..Right Now AmI Might Need To Get The Rest Of My Lubar Spine Fused.
Can A 23 Year Old Take The At Home Drug For SMA?
My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!
I've been on Spinraza since 2018. I feel it's the best for me. But you should ask the neurologist. Even seek out a second opinion. I'm sure this wasn't the answer you were looking for.
Does Anyone On Here Use A Robotic Walker? In Specific We Are Looking At Getting The Trexo.
I have seen amazing results for kiddos with Neuro muscular diseases using the Trexo!
I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter
We previously had a r82 Flamingo, but are looking for something with more padding under the bum as the Flamingo is not comfortable enough. I'd like something that can roll over a toilet, but also be used with a pot. Thx! :)
I love the rifton cammode for good seat padding
How Do You Communicate?
Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox πππ
Gene Therapy
I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?
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