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What Would Your Perfect Day Look Like?
OMG, you have 4! You have a big heart. I adore your dog!
@A mySMAteam Member
SMA Diagnosis
So after the neurologist gave me the SMA diagnosis in Jan, my mom remembered that we were sent to a genetic specialist when I was 4(1984); and SMA wasnt discussed at all.
Just curious if that is a common occurrence, or was SMA just not as well know in 1984?
Wow!
What’s One Thing You Wish People Who Aren’t Living With SMA Could Understand?
Honestly,, I wish people would realize that y'all have problems with muscles and such NOT THAT YOU DON'T HAVE FEELINGS OR A BRAIN THAT WORKS. I wish doctors and nurses would see you the same as… read more
What Is Your Favorite Recreational Activity?
“Hiking” and “bike riding” on my X850 - Permobil👩🦼
On A Day When Your Symptoms Bother You, How Do You Find Relief?
Resting is the only aid some days.
What Advice Do You Have For Someone Newly Diagnosed With SMA?
well said, @A mySMAteam Member
What Is Your Favorite Time Of Year And Why?
Spring and fall are best for me. Too hot here during summertime in AZ
Any Advice For Energy Levels In General?
What would you recommend?
I generally push myself as much as i can, but that doesnt mean not taking breaks. I take frequent small breaks to recharge. Getting outside, taking a long ride is a huge help. I am a little lucky… read more
What Is Your Morning Routine?
What Aspect Of SMA Worries You The Most?
Progression in an area with little medical help or knowledge. I have seen decline in even a years time. Trying PT to keep what I have
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