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Hey Everybody! How Often Do Y’all Go To PT? And What Are Your PT Routines Like?
I also go twice a week but I switch to aquatic therapy in the summer. When I’m on hiatus, I try to do my exercises at home.
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.
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.
What Is One Skill You'd Love To Possess Instantly And The Reason Behind Your Desire?
If I could instantly acquire one skill, it would be the ability to speak multiple languages fluently. My desire is because I've always been fascinated by different cultures and connecting with people… read more
What's The Worst Age For SMA1
It can be heartbreaking to remember what was as we deal with what is and the fear of what the future might hold. Love support and hope is sometimes all we have. I’m comforted with knowing I did the… read more
Any Idea When Risdipalm Is Going To Be Available To Type 4 And Does Anyone Regret Taking In Past?
Why Here Has SMA-LED
hi i am Esther Geertsma from the netherlands and i and my mother and grandfather we had al 3 SMA-LED i look for people of the same and call with you
Hi Esther, I do!
I Will Be Speaking With A Representative Concerning The Challenges Individuals With Disabilities Face Concerning Attendant Care 12-16-2024
What topics, examples, problems, solutions do you have in any regard concerning the physical, financial , mental or any aspect of obtaining, hiring or maintaining attendant care especially in regards to state and Federal programs. Experiences, finding, paying for, etc etc. I am not entirely sure what position person is in I will be speaking with, but they could possibly be in a position to advocate for changes ...so this is very important. Please encourage others to reply.
I am hoping they fold medicade into medicare and offer caregiving service. why do we have 50 separate medicades? Just make it one, and help those that need help the most. my two cents....
Practical Inventor's Team.
So, I was wondering if anyone in the SMA community would be interested in joining forces to develop practical open souce inventions for the disabled. Been working on an exoskelleton project solo. The more I learn about 3D printing and electronics, the more I am beginning to think we shouldn't be waiting for someone else to build the things we imagined could make our lives easier. It is time to do it ourselves and make the plans free to everyone. But as one person, my time and resources are… read more
Gene Therapy
I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?
Can A 23 Year Old Take The At Home Drug For SMA?
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!
I've been on Spinraza since 2018. I feel it's the best for me. But you should ask the neurologist. Even seek out a second opinion. I'm sure this wasn't the answer you were looking for.
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