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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 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.
Name The One Thing You Find Most Challenging About SMA.
SMA is very frustrating as we become more and more limited. I miss walking.
With Type 4, When Do You Know To Give In To It And Stop Work, Or Is This A Daft Question?
@A mySMAteam Member Hang in there. The most important advice I wish I knew earlier is understand your local laws and programs for assisting individuals with disabilities. It really plays an… read more
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
Looking Much Younger Than Age?
So, this is a bit of a funny question, but I noticed on an SMA news forum a common complaint was the fact that many individuals with SMA said they looked much younger than their age and presumably treated like a child despite being an adult. I felt like this most of my life and only now that I am...well...old...have I only begun to view this as a positive and not a negative. Frankly, I never really connected my SMA with looking younger but now am wondering how common is this? Is it more a… read more
I now add 10 years to my age when someone asks. 66yo male sma3
I Would Like Wish Everybody In This Group Happy Halloween. Also Be Safe 🥇🥇🥇🥇🥇🥇🥇🥇🥇
I have able bodied wife who gets me, my sma, that is so rare. I find I'm only totally comfortable with others if they also face physical challenges but finding a group of them is even more rare.
What Day Is It?
I have noticed a lot of people that I young even. When they are in their 70 or 80 I call them young people they most are wiling to help you out in the store. Or young people I alway say thank you.
Gene Therapy
I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?
What Is One Skill You'd Love To Possess Instantly And The Reason Behind Your Desire?
If I could instantly acquire one skill, it would be the ability to speak multiple languages fluently. My desire is because I've always been fascinated by different cultures and connecting with people… read more
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