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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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What Does Independence Mean To You?

What Does Independence Mean To You?

A mySMAteam Member said:

Being able to travel my own road, but knowing I'm not alone; when(its not a matter of 'if', it's a matter of 'when')
I get stuck.

posted 1 day ago

Have You Experienced True Love, Requited Or Otherwise? How Did It Turn Out?

Have You Experienced True Love, Requited Or Otherwise? How Did It Turn Out?

A mySMAteam Member said:

Yes I have experienced true love. I had a child with one of my loves 26 years ago. Last sept I married my love. I am lucky to have experienced love more than once.

posted 13 days ago

What Advice Would You Offer Someone Shopping For A New Seat Cushion?

What Advice Would You Offer Someone Shopping For A New Seat Cushion?

A mySMAteam Member said:

I agree with Aaron get a seating company that works with you and helps you find the right seat cushion it definitely makes a difference if you have the right seat!!

posted 13 days ago

What Advice Would You Give Someone Looking To Hire A Caregiver?

What Advice Would You Give Someone Looking To Hire A Caregiver?

A mySMAteam Member said:

Lexi, I completely agree!! I am currently struggling with a caregiver who became friends and is not treating things like the job she was hired to do. It’s hard in our situation not to become friends… read more

posted 13 days ago

Excessive Phlegm/Mucous

Excessive Phlegm/Mucous

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.

A mySMAteam Member said:

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

posted about 1 month ago

Can Aspiration Be Fatal

Can Aspiration Be Fatal

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

A mySMAteam Member said:

I think it's best to ask your neurologist.

posted about 2 months ago

How Do You Manage Your Energy Throughout The Day?

How Do You Manage Your Energy Throughout The Day?

A mySMAteam Member said:

I don't. There was a movie years ago set in a dystopian future. This guy with a disability lived in a world where most people were genetically modified to be perfect. One of the side stories was… read more

edited, originally posted about 2 months ago

Wheelchair Recommendations????

Wheelchair Recommendations????

Now I've a permobil f3 and this is great, but I don't like the speed limit for when you raise it so, what other chair would u recommend me?

A mySMAteam Member said:

I have a Quickie Q700 M and I love it! It can go a good speed while raised.

posted about 2 months ago
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