SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had. | mySMAteam

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SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
A mySMAteam Member asked a question 💭

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

posted March 23, 2020
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A mySMAteam Member

Thank you so much for shared your story! I’m confused as to what I’m hearing about the Spinraza treatment...Isn’t that treatment extremely hard to get because of price? I don’t mean to pry but how did… read more

posted September 17, 2020
What's One Natural Remedy That's Helped In Managing Your SMA?
A mySMAteam Member asked a question 💭
posted August 21
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A mySMAteam Member

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.

posted September 13
Power Wheelchair Recommendations
A mySMAteam Member asked a question 💭

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

posted April 23
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A mySMAteam Member
posted August 19
Looking Much Younger Than Age?
A mySMAteam Member asked a question 💭

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

posted October 20, 2022
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A mySMAteam Member

Growing up, I was always a bit on the heavy side and, at times, overweight, but I can't tell you how many times people would put the word "little" in front of my name or kids would say mommy look at… read more

posted November 29, 2022
How Do You Communicate?
A mySMAteam Member asked a question 💭

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 👇👇👇

posted October 7, 2020 (edited)
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What’s The One Thing That's Helped You Most With Fatigue?
A mySMAteam Member asked a question 💭
posted May 15
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A mySMAteam Member

Watch what I eat a lot healthy food. In while I will have hamburgers with fries to say you are you funny person.

posted June 20
Covid Booster
A mySMAteam Member asked a question 💭

So, I am very confused as to whether I should get a 6th covid booster just approved by the FDA for individuals over 65 and immunocompromised. Is nothing on the CDC website about SMA, I am not entirely sure my regular doctor fully understands SMA, and the place I get my shots from seem confused and are hesitant to give shot without some confirmation. Am about to go on vacation and I really don't want to have to wear a mask at the beach. I have SMA type 2. Do I qualify for the latest booster?

posted April 27
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A mySMAteam Member

I've had 5 shots already...never had Covid...so if it is poison i am immune to it.

posted April 29
In What Ways, If Any, Has Your SMA Affected How You Consume Alcohol?
A mySMAteam Member asked a question 💭
posted April 17
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A mySMAteam Member

I have a drink with dinner every night..

posted May 9
For Those That Take Treatment For Your SMA: What Has Been Your Most Noticeable Change, If Any?
A mySMAteam Member asked a question 💭

i.e Spinraza, Evrysdi, Zolgensma

posted November 27, 2022
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A mySMAteam Member

Keep doing what you're doing!❤️💪

posted April 16
Transfer To Shower Chair
A mySMAteam Member asked a question 💭

Hi everyone. I have an urgent but somewhat embarrassing question to ask everyone For quite some time I have been desperately looking for attendant care. Currently my night attendant who has another client has been filling in for some time. My agency thinks they may have possibly found someone, but they are only willing to lift me with a hoyer lift. I have a hoyer lift, and while i have successfully used it to transfer from my wheelchair into bed, no one I have ever had out has figured out… read more

posted May 5, 2022 (edited)
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A mySMAteam Member

Not sure if helpful but the sliding shower chair is what I've used for years, my bathroom allows them to put shower chair next to toilet (height adjustable) for easier transfer to shower chair then it… read more

posted September 13
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