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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?
A mySMAteam Member asked a question 💭

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 👇👇👇

posted October 7, 2020 (edited)
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SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
A mySMAteam Member asked a question 💭

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 March 23, 2020
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A mySMAteam Member

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 September 17, 2020
Transfer To Shower Chair
A mySMAteam Member asked a question 💭

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

posted May 5, 2022 (edited)
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A mySMAteam Member

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

posted September 28, 2022
Has Anyone Tried Electrical Stimulation? (E Stim)
A mySMAteam Member asked a question 💭

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

posted March 21, 2022
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A mySMAteam Member

Yes I love it! I bought a device so I can do it at home. It helps with a lot with the cramping I get in my legs.

posted November 27, 2022
What Are You Really Proud Of?
A mySMAteam Member asked a question 💭
posted January 24, 2022
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A mySMAteam Member

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

posted February 1, 2022
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?
A mySMAteam Member asked a question 💭
posted December 16, 2021
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A mySMAteam Member

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 February 23, 2022
What Are New Life Hacks You've Learned To Better Manage Your Life With SMA?
A mySMAteam Member asked a question 💭
posted March 20
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A mySMAteam Member

1. Listen to your body...when you have energy, do as much as you can while you can
2. Prepare for future. This means understanding how laws, savings and the political environment effects things you… read more

posted 6 days ago
Lifting Weights - Causing Or Limiting Atrophy?
A mySMAteam Member asked a question 💭

Hi all. The advice is so conflicting on the topic of lifting weights. I'm a strong type 3. I can still feel good muscle in my arms and it exists (albeit not great) in my legs. Is lifting weights ok or are we to limit our exercise to lifting our own body weight only? I am on Evrysdi.

posted February 22
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A mySMAteam Member

You can exercise. But don't overdo it. As I stated above. Aqua therapy is the best! Best of luck to you!!

posted March 8
Does Anyone Get Random Muscle Spasms Especially When Relaxing In Bed?
A mySMAteam Member asked a question 💭
posted February 20
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A mySMAteam Member

Yes, -- behind left or right knee -- back of thigh. Also mid back, sometimes, sometimes right
I use baclophen and essential oils - rub - avocado oil with ginger oil mixed. Good question - thanks.

read more

posted February 21
What's One Thing About SMA You Feel Isn't Talked About Enough?
A mySMAteam Member asked a question 💭
posted February 20
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A mySMAteam Member

Caregivers, how to manage them and have a independent life as much as possible

posted February 26
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