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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.
205 questions
I Would Like To Give Everybody’s A Hug. Remember We Are Great People’s With Love In Are HEART.
A mySMAteam Member asked a question 💭
A mySMAteam Member

My son has been diagnosed with a genetic pathology of VRK1 non5q SMA. It appears to be very rare with little to no information about it.

He has advanced atrophy of his right calf muscle and the… read more

posted September 16, 2023
Why Here Has SMA-LED
A mySMAteam Member asked a question 💭

hi i am Esther Geertsma from the netherlands and i and my mother and grandfather we had al 3 SMA-LED i look for people of the same and call with you

A mySMAteam Member

Smaiii 65yo male here, Noone else in family thankfully. Have a great day

posted September 13, 2023
I Am 68 And Have Spinal Muscular Atrophy. How Do You Live After You Lose Your Independence?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Your independence is up to YOU! I'm 65 and I'm always going out. Such as concerts, sporting events, and dinners with family and friends. We all have choices. You're letting SMA define you. People with… read more

posted September 7, 2023
What's One Natural Remedy That's Helped In Managing Your SMA?
A mySMAteam Member asked a question 💭
A mySMAteam Member

I keep my self busy with my dog. It help me in a lot way. We got outside he listen to me. When I tell him to stop. He will check on me.

posted September 13, 2023
Is There Another Big Reliable Wheelchair Supplier, Service And Repair Company Serving Maryland Other Then NuMotion?
A mySMAteam Member asked a question 💭

Wheelchairs batteries just about completely dead. Put in for new batteries like a month ago. Are sitting in NuMotions storage somewhere. Earliest can come to install...September 1st. Tell them is emergency, batteries critical...spent entire day stuck at a table because batteries dead on Tuesday. Sorry...no one can come out until September 1st. What????😡

So, what is going on with NuMotion? I put in for replacement hospital bed remote in early July...they sent wrong remote...still not send right… read more

A mySMAteam Member

I don’t know any one from your place. I get my from Richland WA. I will help you out.O.K. That is what friend are for to help other in need.

posted August 16, 2023
Does Anyone Know Someone Willing To Sew Custom Wheelchair Seat Cover? Willing To Pay.
A mySMAteam Member asked a question 💭

I am having a very hard time trying to find anyone capable or willing to sew a custom wheelchair seat cover for my wheelchair. Looking for someone who can make a cover similar to this
https://www.instructables.com/Wheelchair-Seat-C...
With a few minor changes like a detachable bag
My mother use to sew my covers before her passing. I made my last two seat covers including the one pictured, but each one took me nearly two years to sew as I can't operate a descent sewing machine and had to… read more

A mySMAteam Member

I found latino upholstery shops, they have a kind heart.

posted October 21, 2023 (edited)
What Day Is It?
A mySMAteam Member asked a question 💭
A mySMAteam Member

I have noticed a lot of people that I young even. When they are in their 70 or 80 I call them young people they most are wiling to help you out in the store. Or young people I alway say thank you.

posted February 6
What Is The Life Expectancy For SMA Type 1?
A mySMAteam Member asked a question 💭
A mySMAteam Member

My friend told me I am old than the planet Pluto. That was funny 🤣🤣🤣🤣🤣

posted August 12, 2023
What Is One Skill You'd Love To Possess Instantly And The Reason Behind Your Desire?
A mySMAteam Member asked a question 💭
A mySMAteam Member

If I could instantly acquire one skill, it would be the ability to speak multiple languages fluently. My desire is because I've always been fascinated by different cultures and connecting with people… read more

posted July 28, 2023
What’s Your Top Survival Tip For Managing SMA In The Summer Heat?
A mySMAteam Member asked a question 💭
A mySMAteam Member

I've tried many things but nothing close to working yet. It would be amazing to have the safe tech (along with a big enough market) to get products like these for golf carts and motorcycles for our… read more

posted September 12, 2023
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