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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.
Hey Everybody! How Often Do Y’all Go To PT? And What Are Your PT Routines Like?
I also go twice a week but I switch to aquatic therapy in the summer. When I’m on hiatus, I try to do my exercises at home.
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.
I Have SMA Type 4 What Do I Tell My Doctors?
I always share my SMA diagnosis with my doctors. I usually have to explain what it is and how I’m affected by it. I believe it’s important for them to know everything about me in order to understand… read more
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.
Gene Therapy
I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?
How Can I Loose Weight?
I have SMA type 3 and I feel like i’ve gain some weight and don’t know how to loose it. I heard Fasting can just make things worse.
Limit your portions. No one should eat until their stuff. And do lite exercises.
Dealing With Government Regulations On Attendant Care
I am still entangled in the bureaucratic quagmire of my attendant care program. Long story short, around the beginning of the Pandemic, I lost a reliable attendant and i have been in a nightmare ever since then. I can't afford all the attendant care i need privately, so had no choice but to sign up for a state waiver program that has all kinds of ridiculous rules and regulations. The state program barely pays minimum wage, they dont cover gas or transportation, and they only cover a minimal… read more
15 years ago I looked at how I would obtain caregivers. I would need to spin down my meager assets to less than 2k. Smart ones move to California where state actually cares. All options in US… read more
Lifting Weights - Causing Or Limiting Atrophy?
Hi all. The advice is so conflicting on the topic of lifting weights. I'm a strong type 3. I can still feel good muscle in my arms and it exists (albeit not great) in my legs. Is lifting weights ok or are we to limit our exercise to lifting our own body weight only? I am on Evrysdi.
EricOvelgone, I feel the best for everyone is to ask their doctor who is treating their SMA about working out. This way you and others have no confusion. Just my opinion...
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