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About mySMAteam

SMA

Questions + Answers

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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.
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How Do You Communicate?

How Do You Communicate?

Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇

edited, originally posted almost 2 years ago

Clinical Trials

Clinical Trials

Can someone of this group tell me something about myostatin inhibitors for people with SMA?

posted 9 months ago

Transfer To Shower Chair

Transfer To Shower Chair

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

edited, originally posted 5 months ago
A mySMAteam Member said:

Try a hygiene sling!! Much easier to get in and out!

posted 3 days ago

Has Anyone Tried Electrical Stimulation? (E Stim)

Has Anyone Tried Electrical Stimulation? (E Stim)

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

posted 6 months ago
A mySMAteam Member said:

Where are you looking place these e stim probes?

posted 3 months ago

How Do You Decrease Your Anxiety? What Tips Would You Share?

How Do You Decrease Your Anxiety? What Tips Would You Share?

posted about 2 months ago
A mySMAteam Member said:

Sorry...i misposted a comment here i meant for my own update. I was looking for tips for my own anxiety. Right now i have no tips to give.

edited, originally posted about 2 months ago

Can Aspiration Be Fatal

Can Aspiration Be Fatal

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

posted 3 months ago
A mySMAteam Member said:

I think it's best to ask your neurologist.

posted 3 months ago

Any Advice For Energy Levels In General?

Any Advice For Energy Levels In General?

What would you recommend?

posted 6 months ago
A mySMAteam Member said:

I generally push myself as much as i can, but that doesnt mean not taking breaks. I take frequent small breaks to recharge. Getting outside, taking a long ride is a huge help. I am a little lucky… read more

posted about 2 months ago
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