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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

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more

posted over 2 years ago
A mySMAteam Member said:

Thank you so much for shared your story! I’m confused as to what I’m hearing about the Spinraza treatment...Isn’t that treatment extremely hard to get because of price? I don’t mean to pry but how did… read more

posted about 2 years 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

What Are You Really Proud Of?

What Are You Really Proud Of?

posted 8 months ago
A mySMAteam Member said:

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

posted 8 months ago

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?

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?

posted 10 months ago
A mySMAteam Member said:

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 7 months ago

How Do You Ask For Help From Family Or Friends?

How Do You Ask For Help From Family Or Friends?

posted 12 days ago
A mySMAteam Member said:

My experience is that everyone has a limit of how much help they are willing to provide...and no matter how hard you might try...your needs are likely to extend beyond that of which even family are… read more

posted 11 days ago

Have You Worked With A Physical Therapist? What Kind Of Exercises Did You Do?

Have You Worked With A Physical Therapist? What Kind Of Exercises Did You Do?

posted 23 days ago
A mySMAteam Member said:

Yes, I have been going to physical therapy regularly, two days a week, since I was five years old. It has an importance for us that should not be underestimated.

posted 15 days ago

Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?

Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?

This body shaming problem is for everyone i guess, not for people with sma only. But anyway I wanted to ask as a girl struggling with that feeling time to time

posted 4 months ago
A mySMAteam Member said:

Well Personally I don't much like wearing anything that Clings to My Body, because then My Crooked Body really shows. So I tend to buy what I like, but I may buy just a tad bit larger just so it's not… read more

posted 17 days ago

What Is Your Morning Routine?

What Is Your Morning Routine?

posted 6 months ago
A mySMAteam Member said:

I do some morning arm exercises before I get out of the bed. My mom helps me out of bed with my sure-hands. She then helps me get a shower, then I shave and brush my teeth. She then helps me get… read more

posted 6 months ago
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