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What Do You Look Forward To Accomplishing In 2023?
Awesome
Neurologist
Pennsyvania peep what neurologist do you use and where are they im looking for a dr in pa so my insurance will be in network to pay?
there is a neuromuscular department at Upenn
I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Don’t Know What To Do.
The doctor said to do balance and strength exercises but that wont help with atrophy. Do I visit a neurologist for advice or give up doing things in the house like preparing meals and washing up.
How Common Is Respiratory Acidosis Among Those Who Have Spinal Muscular Atrophy?
So...i know respiratory difficulties of all sorts are common with SMA. I can't speak specifically about respiratory acidosis.
How Handle Dealing With Someone Dating Who Is Getting Very Serious...are Not Sure If Able Because Of Disability?
Am having very conflicted feelings as I know I may never meet someone again who was interested in me in this way...but am not really sure can physically, emotionally and financially fullfill this person's visions for a future. I don't want to break up as care for this person...but don't think i could really fullfill her wishes.
I've struggled with this my whole life and continue to do so...I subconsciously sabotage every close relationship for fear of not being able to provide what that person deserves. I never thought it… read more
What's The Most Important Thing You Learned About Living With SMA This Past Year?
Having friends that can cheer you up. Being depression is not good for anybody.
What End-of-Life Looks Like? My Apologies If This Is A Bit Dark...
I'm wondering if anyone has any idea what "end-of-life" begins to look like or may look like for someone with SMA type 2. I just turned 44.
Lately, I've been really, really tired, I've lost quite a bit of strength the past few months, and I'm having more difficulty breathing and continue to fill up with extra phlegm and mucus when sleeping. For the last several months, I have been using a suction device when lying in bed to remove this phlegm.
I've also lost a lot of weight, and my appetite… read more
Very Beautiful. It is peace place also a lot people smile .A lot of LOVE. Everybody has Compassion.
Is There Any One With Type 1 And Get Zolgensma.
I Would Like To Know If Anyone Has Used The Drug Evrysdi / Risdiplam? For Treatment Of Smalled1
Traveling For The Holidays? If So, Can You Share Your Favorite Travel Tips?
When you go to different country. If You would like to learn the language of that country learn from a child. They will laugh at you but they show and teach to say it right.
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