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 👇👇👇
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
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
Try a hygiene sling!! Much easier to get in and out!
If you have I’m looking to know what settings you used on the device.
Yes I love it! I bought a device so I can do it at home. It helps with a lot with the cramping I get in my legs.
I'm proud that I continue to advocate for myself and that I haven't dropped out of college😂
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.
1. Listen to your body...when you have energy, do as much as you can while you can
2. Prepare for future. This means understanding how laws, savings and the political environment effects things you… read more
Hi all. The advice is so conflicting on the topic of lifting weights. I'm a strong type 3. I can still feel good muscle in my arms and it exists (albeit not great) in my legs. Is lifting weights ok or are we to limit our exercise to lifting our own body weight only? I am on Evrysdi.
You can exercise. But don't overdo it. As I stated above. Aqua therapy is the best! Best of luck to you!!
Yes, -- behind left or right knee -- back of thigh. Also mid back, sometimes, sometimes right
I use baclophen and essential oils - rub - avocado oil with ginger oil mixed. Good question - thanks.
Caregivers, how to manage them and have a independent life as much as possible
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