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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.
201 questions
Dating Delema
A mySMAteam Member asked a question 💭

How do you handle telling someone that you can't take them to where they want to go on a date because the place they want to go is not really wheelchair accessible..even though the website says it is?

So, the lovely person I have been dating really wants me to take her out to a Halloween theme park for her birthday. Asside from the billion of complications of trying to arrange a ride there, pick her up, arrange for my attendant to put me to bed at night and the steep cost of tickets more than… read more

posted October 21, 2023 (edited)
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A mySMAteam Member

There are actually quite a few more accessible places than people realize,,,I know I didn't until I started dating my husband. There's even accessible water parks,,,100% accessible. Just go for… read more

posted January 18
How Can I Loose Weight?
A mySMAteam Member asked a question 💭

I have SMA type 3 and I feel like i’ve gain some weight and don’t know how to loose it. I heard Fasting can just make things worse.

posted October 17, 2023
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A mySMAteam Member

Limit your portions. No one should eat until their stuff. And do lite exercises.

posted October 21, 2023
Any Parents Of Kids Who Have Received The Zoolgensma Treatment?
A mySMAteam Member asked a question 💭
posted October 11, 2023
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Hi , Is There A More Info On The New Drug Development Called Apitegromab – Scholar Rock? I Understood This Drug Is In Phase 3 . Thank You
A mySMAteam Member asked a question 💭
posted October 9, 2023
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A mySMAteam Member

I want to lose weight, SMA type 2

posted October 10, 2023
Any Tips To Make A Toilet Seat More Comfortable?
A mySMAteam Member asked a question 💭

We use a stand-alone toilet and Hoyer Lift to get my adult son onto it. Long sitting time takes a lot of energy,

posted October 6, 2023
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A mySMAteam Member

Thanks Fred! Will hunt down some plastic options to try.

posted October 26, 2023
What Is The Average Life Expectancy For People Who Have Sma Type 2?
A mySMAteam Member asked a question 💭
posted September 27, 2023
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A mySMAteam Member

My first neurosurgeon told me an average adult would be around 47 but that was depending on different factors

posted October 3, 2023
What SMA Symptom Do You Have That You Didn’t Expect?
A mySMAteam Member asked a question 💭
posted September 22, 2023
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A mySMAteam Member

Please understand I'm not bitter, just frustrated. Truth be told, I'm grateful that God has been very good to me. I am now 72 years old. Doctors told my mom I be lucky to be 12 or 14.😁😁😁😁😁

posted October 31, 2023
Just To Tell We Are Very Normal People. With Kind Heart
A mySMAteam Member asked a question 💭
posted September 16, 2023
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A mySMAteam Member

Everybody in this group always have a Beautiful heart. I would like to apology everybody. Sorry I have not get to you sooner. I also have seizures to. I do not understand why. Do everybody understand… read more

posted October 18, 2023
I Need An Assistive Devices/equipments For Control My Neck Movement, Please Suggest Some For Me
A mySMAteam Member asked a question 💭
posted September 13, 2023
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A mySMAteam Member

I have type three and have noticed neck weakness too so I tried neck pillows and supports bur found this on Amazon https://www.amazon.com/dp/B07XKJVQ3W?psc=1&...
you can shape it any way you want… read more

posted September 22, 2023
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 💭
posted September 9, 2023
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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
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