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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 Is Everyone Doing
A mySMAteam Member asked a question 💭
posted February 20
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A mySMAteam Member

Happy Sunday from Tennessee 🌞

posted March 5
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
Does Anyone Know Where I Could Sell Our Used Ki Mobility Wheelchair In Texas?
A mySMAteam Member asked a question 💭
posted February 14
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Does Risdiplam Cause Constipation Or Acidic Stools?
A mySMAteam Member asked a question 💭

My daughter has been dealing with constipation lately. Wasn’t sure if it is Risdiplam related or not. When she does poop and it’s soft it burns her bottom. She will get a raw butt quick. Any suggestions on how to help soften her stool? She turned one in December. She can eat soft solid foods by mouth and drink liquids by mouth. We have a gtube but do not currently use it.

posted January 28
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Does Anyone Know How To Stop The Back Spasming - Morning - And At Night? Ty Best, Lynn
A mySMAteam Member asked a question 💭

Baclophen helps, are there any essential oils, to help the spasms to subside?

posted January 28
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Headrest Recommendations
A mySMAteam Member asked a question 💭

Hiii! You see, I have sma 2 and my neck is a little weak, I have been looking for a comfortable headrest for a long time but I have not been able to find one. They are all too big or do not reach the back of my neck, especially because my backrest is too high and I have been told that it can not be lowered. At home I have no problems but to go out in the street or to travel by car I have to take one of those neck pillows that are used to sleep on airplanes. I would like to replace it with… read more

posted January 26
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What Do You Look Forward To Accomplishing In 2023?
A mySMAteam Member asked a question 💭
posted January 25
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A mySMAteam Member

1) Get someone to fix 3d printer
2) Resume designing robotic arm brace
3) Finish steampunk lamp
4) Finish hanging 'No Face' lantern based on Spirited Away
5) Finish 1 painting a month
6) Finish… read more

posted February 1
Neurologist
A mySMAteam Member asked a question 💭

Pennsyvania peep what neurologist do you use and where are they im looking for a dr in pa so my insurance will be in network to pay?

posted January 20
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A mySMAteam Member

there is a neuromuscular department at Upenn

posted March 11
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 understand your concerns. My biggest fear is falling. After fracturing my hip and knee from a bad fall, I started using a platform walker. It helps me to walk without losing my balance. It also… read more

posted January 25
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