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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 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

What Does Independence Mean To You?

What Does Independence Mean To You?

posted 2 months ago
A mySMAteam Member said:

to me, independance means having autonomy and control over my choices. I don't necessarily mind that there are things I can't physically do on my own, I just view independence as being able to certain… read more

posted about 1 month 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?

posted 2 months ago
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 2 months 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?

posted 3 months ago
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 2 months ago

Have You Tried Botox To Treat Muscle Stiffness? If So, How Was Your Experience? If Not, Would You Consider It?

Have You Tried Botox To Treat Muscle Stiffness? If So, How Was Your Experience? If Not, Would You Consider It?

posted 3 months ago
A mySMAteam Member said:

I would definitely talk to your doctor about this, as I've heard that Botox is a big NO for those of us with SMA. However, I have tried acupuncture and that did help a little bit.

posted about 1 month ago

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

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

posted 3 months ago
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 2 months 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.

posted 3 months ago
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 3 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

How Do You Manage Your Energy Throughout The Day?

How Do You Manage Your Energy Throughout The Day?

posted 3 months ago
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 3 months ago
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