comedian with sma uses stand up comedy to advocate for disability rights and spinal muscular atrophy | mySMAteam

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Top 10 Search Results for "comedian with sma uses stand up comedy to advocate for disability rights"

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As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?
A mySMAteam Member asked a question 💭

I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more

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A mySMAteam Member

Totally understand how that goes with unreliable care attendants, one's that you really don't want to be alone with or need to be either, or one's that actually really show up early or on time every… read more

Is Ridisplam Effective For SMA-LED1 Disease?
A mySMAteam Member asked a question 💭
What Is SMA-LED? Read Article...
What Gene Causes SMA?
A mySMAteam Member asked a question 💭
Treatment Kab Aayega Sma Type 3 Ka
A mySMAteam Member asked a question 💭
Earning Money While On Disability
A mySMAteam Member asked a question 💭

How do you earn money without loosing critical disability benefits and Medicare ? So, in many ways, I am very lucky. When I started needing attendant care, I did the math and there was no way I could earn enough money, keep working, and pay for attendant care. The programs in my state that cover attendant care very strictly require an individual have less than $2,000 in assets total (including such things as gold teeth, burial plots, etc) and not be employed. If not for my father's support… read more

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Sir If Any Updates Regarding The Complete Cure Of SMA Please Kindly Mail To My Account. "Service To Man Is Service To God"
A mySMAteam Member asked a question 💭
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Excessive Phlegm/Mucous
A mySMAteam Member asked a question 💭

This has always been something I've had to deal with having SMA but within the last several years and the past few months, it has become much worse. Especially after eating or drinking and while trying to sleep. Often at night, I will wake up to choking and congestion from this.

I understand that this comes with the territory but could this be fatal? Can I end up drowning so to speak? If so, is it likely or probably not that likely to happen? I am 43 years old with SMA 2.

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A mySMAteam Member

I’m sorry 😞 I know these types of changes can be stressful
I sleep with an aVAC most nights but even then I deal with some congestion
If Im concerned about mucus or build up in my sleep I will make… read more

Anyone With Type 1 Sma Child Who Got Zolgensma?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Yes, at 8 months old. His legs started moving in 2 days. He can now swallow, stand independently, walk short distances, and started riding a bike with training wheels. My general answer is to reply… read more

Which Is Better For Treating Sma Disease, Is Evrysdi Or Spinraza?
A mySMAteam Member asked a question 💭

Which is better for treating sma disease, is Evrysdi or Spinraza?

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Can Aspiration Be Fatal
A mySMAteam Member asked a question 💭

How common or likely is it for people with SMA to die from aspirating?

A mySMAteam Member

I think it's best to ask your neurologist.