SMA
Questions + Answers
How Do You Communicate?
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 ššš
SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
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 youā¦ read more
Transfer To Shower Chair
Transfer To Shower Chair
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 outā¦ read more
Try a hygiene sling!! Much easier to get in and out!
Has Anyone Tried Electrical Stimulation? (E Stim)
Has Anyone Tried Electrical Stimulation? (E Stim)
If you have Iām looking to know what settings you used on the device.
What Are You Really Proud Of?
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?
How Do You Ask For Help From Family Or Friends?
Have You Worked With A Physical Therapist? What Kind Of Exercises Did You Do?
Have You Worked With A Physical Therapist? What Kind Of Exercises Did You Do?
Yes, I have been going to physical therapy regularly, two days a week, since I was five years old. It has an importance for us that should not be underestimated.
Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?
Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?
This body shaming problem is for everyone i guess, not for people with sma only. But anyway I wanted to ask as a girl struggling with that feeling time to time
