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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 👇👇👇

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

Clinical Trials

Clinical Trials

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

I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter

I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter

We previously had a r82 Flamingo, but are looking for something with more padding under the bum as the Flamingo is not comfortable enough. I'd like something that can roll over a toilet, but also be used with a pot. Thx! :)

Tell Me Your Favorite Movie By Quoting A Line From It.

Tell Me Your Favorite Movie By Quoting A Line From It.

My favorite movie quote is, 'We are the music-makers, and we are the dreamers of dreams."

A mySMAteam Member said:

Every time a bell rings an angel gets its wings.

posted about 2 months ago

What Tools Do You Use To Manage SMA?

What Tools Do You Use To Manage SMA?

A mySMAteam Member said:

I’m not sure if I understand the question. But the aids I use are: Walker, wheelchair, leg lifter, strap to hold legs together and especially the walls so I don’t lose my balance and fall.

posted 3 months ago
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