For Those Adults With SMA, How Old Are You And Which Type? | mySMAteam

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For Those Adults With SMA, How Old Are You And Which Type?
A mySMAteam Member asked a question 💭
posted March 23, 2020
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A mySMAteam Member

I am 72 with ALS type 3

posted 5 days ago
I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Don’t Know What To Do.
A mySMAteam Member asked a question 💭

The doctor said to do balance and strength exercises but that wont help with atrophy. Do I visit a neurologist for advice or give up doing things in the house like preparing meals and washing up.

posted January 18
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A mySMAteam Member

I've used a scooter for decades now. The tiller gives us hand hold for all sorts of things, standing or transferring. My scooter has lift seat which helps immensely when I need to transfer to taller… read more

posted September 13
Name The One Thing You Find Most Challenging About SMA.
A mySMAteam Member asked a question 💭
posted November 22, 2021
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A mySMAteam Member

SMA is very frustrating as we become more and more limited. I miss walking.

posted July 21
Everyone Feels Sad Or Depressed Sometimes. What Do You Do To Boost Your Mood When You’re Feeling Down?
A mySMAteam Member asked a question 💭
posted May 30, 2022
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A mySMAteam Member

My son play with my Dogs and watch a lot of funny movies

posted June 23, 2022
On A Day When Your Symptoms Bother You, How Do You Find Relief?
A mySMAteam Member asked a question 💭
posted April 21, 2022
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A mySMAteam Member

Resting is the only aid some days.

posted May 17, 2022
What's The Best And Worst SMA Advice You Have Received?
A mySMAteam Member asked a question 💭
posted January 18, 2022
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A mySMAteam Member

Just be you fight

posted February 19, 2022
Can A 23 Year Old Take The At Home Drug For SMA?
A mySMAteam Member asked a question 💭

My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!

posted April 22, 2021
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A mySMAteam Member

Hi 👋🏼. I’m 33 years old and take Evrysdi the oral medication for SMA. It is approved for all ages and all stages of SMA. I have been on it for 3 months. I feel my side effects have been minimal… read more

posted December 16, 2021
What's One Natural Remedy That's Helped In Managing Your SMA?
A mySMAteam Member asked a question 💭
posted August 21
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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
Power Wheelchair Recommendations
A mySMAteam Member asked a question 💭

So...part of me knows this is a ridiculous question, but I am hoping that maybe there have been changes I am unaware of. It is that dreaded time when I have to begin to apply for a new wheelchair.

It use to be I would look forward to the process. Use to be every new model of wheelchair would be better, drive further, be faster, overall better. That has not been the case however the last twenty years. The wheelchair I own twenty years ago was in every way better than the one ten years ago… read more

posted April 23
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A mySMAteam Member
posted August 19
Name The Biggest Physical Challenge For You?
A mySMAteam Member asked a question 💭
posted January 20, 2022
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A mySMAteam Member

Where I live if a crater fell out of the sky and hit our hospital our town would not have lost a thing! It is a JOKE!!

posted April 11, 2022
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