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Hey Everybody! How Often Do Y’all Go To PT? And What Are Your PT Routines Like?
How I Feel Very Sleepy Hard To Stand Half Time
Are You Frustrated With Finding Effective Treatments For SMA?
Genetech can help you with everysdi/risdiplam. All 3 mfrs have abundant resources and are eager to help you
Where Can I Find Emergency Funding For Repairs For Disability Modifications?
After a powerful storm last week, I discovered that both of the automatic doors on our house got damaged possibly from a power surge. The automatic doors are absolutely critical to my safety ...but last time called for service ...it was an $800 bill to repair one door. I need two doors installed by two separate companies repaired and can't afford what is likely a $2,000 bill. My coordinator for my disability program is already indicating that my disability program might not cover the cost of the… read more
Look for 504c charities that help with medical assistant, the pan foundation for example, another is mygooddays.org.
Does Anyone Take Something Stronger Than Extra Strength Tylenol For Pain When You Cannot Take Ensaids And What Is It?
Is There A Resource On Here To Share Experiences We Have With Different Products And Companies Who Sell Those Items?
Specifically a company who has, what I believe to be, terrible customer service, misleading company information and demanding sales of their accessories and goods exclusively or void their warranty?
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
What's A Common Misconception About SMA?
Still seeking the specific diagnosis in Nyc.
Best, Lynn
My symptoms are an exact match even to the "bear hug" pain, at times
For Anyone That Uses A Power Wheelchair That Can Still Stand Up What Chair Do You Use Thats The Easiest To Stand From?
Scooter, the tiller is useful in so many ways
Hi, I Have Sma Type 3, From Few Days I Have Some Involuntar Facial And Finger Twitching, It Is Normal ? I Was Kinda Stressed Too
Since I’ve been on evrysi , I do not have twitches anymore. But everyone’s different so the choice is try them both with using a notepad to document when you do twitch
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