For Those That Take Treatment For Your SMA: What Has Been Your Most Noticeable Change, If Any? | mySMAteam

Connect with others who understand.

sign up Log in
Resources
About mySMAteam
Powered By

Questions & Answers

Get practical advice and insights from people who understand

Don't see your question? Ask one here
Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
206 questions
For Those That Take Treatment For Your SMA: What Has Been Your Most Noticeable Change, If Any?
A mySMAteam Member asked a question 💭

i.e Spinraza, Evrysdi, Zolgensma

A mySMAteam Member

Thats too bad. Spinraza has made a difference in my life. I realize everyone is different.

posted November 3, 2023
Transfer To Shower Chair
A mySMAteam Member asked a question 💭

Hi everyone. I have an urgent but somewhat embarrassing question to ask everyone For quite some time I have been desperately looking for attendant care. Currently my night attendant who has another client has been filling in for some time. My agency thinks they may have possibly found someone, but they are only willing to lift me with a hoyer lift. I have a hoyer lift, and while i have successfully used it to transfer from my wheelchair into bed, no one I have ever had out has figured out… read more

A mySMAteam Member

Wheelchairs lack a very important feature found on scooters, the tiller. For transfers I use a belt strap and use the tiller as support when doing a slide transfer. I have not needed a hoist. When… read more

posted October 17, 2023
Has Anyone Tried Electrical Stimulation? (E Stim)
A mySMAteam Member asked a question 💭

If you have I’m looking to know what settings you used on the device.

A mySMAteam Member

Yes I love it! I bought a device so I can do it at home. It helps with a lot with the cramping I get in my legs.

posted November 27, 2022
What Are You Really Proud Of?
A mySMAteam Member asked a question 💭
A mySMAteam Member

I'm proud that I continue to advocate for myself and that I haven't dropped out of college😂

posted February 1, 2022
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?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Working at it in PT now. Getting some relief 🙌🏻. I was just curious if anyone had some quick fixes 🤣. Unfortunately I think this will just be a long term thing I’m dealing with.

posted February 23, 2022
Is SMA The Cause Of My Tiredness? It Is Hard Work Doing Anything And Walking. It Would Make Sense That That Is The Reason For My Tiredness.
A mySMAteam Member asked a question 💭
A mySMAteam Member

Ok Fred I will make more effort thanks

posted March 18
How Does The Cold Affect Your SMA?
A mySMAteam Member asked a question 💭
A mySMAteam Member

I move to South America for the weather and cost of living. We do not do well in cold!

posted February 5
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 💭
How Many People Are With SMA LED Here?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Hi! My daughter has SMA LED

posted December 17, 2023
What's On Your Holiday Wish List That Could Improve Your Life With SMA?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Friends , family and attendants to all be healthy. I am in constant fear of someone falling ill or current health conditions causing greater havoc. Sadly, that is not something can buy.

posted December 23, 2023
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in