SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more
What's One Natural Remedy That's Helped In Managing Your SMA?
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.
Power Wheelchair Recommendations
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
Looking Much Younger Than Age?
So, this is a bit of a funny question, but I noticed on an SMA news forum a common complaint was the fact that many individuals with SMA said they looked much younger than their age and presumably treated like a child despite being an adult. I felt like this most of my life and only now that I am...well...old...have I only begun to view this as a positive and not a negative. Frankly, I never really connected my SMA with looking younger but now am wondering how common is this? Is it more a… read more
I now add 10 years to my age when someone asks. 66yo male sma3
I Have SMA Type 3 And Have A Torn Rotator Cuff. I Am Wondering If Anyone Has Dealt With This Specific Injury While Also Having SMA?
Working at it in PT now. Getting some relief 🙌🏻. I was just curious if anyone had some quick fixes 🤣. Unfortunately I think this will just be a long term thing I’m dealing with.
How Do You Communicate?
Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇
Do You Follow A Specific Diet To Help With SMA?
Eat little bit every day
How Can A Person Living With SMA Reduce The Recurrence Of Bronchial Infections E.g. Bronchitis, Pneumonia?
I have SMA and constantly suffer from bronchial infections due to post nasal drip and would really like to be able to manage it .
Bipap at night with settings you can handle and that will help you sleep through the night. Good suction, coughalator and vest treatments morning and night(this is all what we do for my son) and I… read more
How Does The Cold Affect Your SMA?
I moved to S. America to escape the cold. Cold is our enemy.
هل يوجد علاج واعد S M A LED 2