Questions & Answers

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 👇👇👇

There was an article last November saying Zolgensma could be helpful for adults. Will they be doing a clinical trial on that soon? I have not seen anything further on it.

I am hurting all over but mostly my hands. I have never had my hands hert so badly. Is there any where in the Phoenix Valley that can give a massage for this type of MD. I know this will help and does not use any drugs to relive pain. Every where I have contacted has either gone out of business or moved to a different state. I am running out of leads. It could be that it is not posable to get that type of massage in Arizona. I don't want to take drugs for pain but this hurting so bad that I will… read more

I’m scheduled for my first appt with a specialist to address finding sma in my genetic testing markers when pregnant with my child at 12 weeks. Apparently I have type 4 and looking to get some truth about what this means for me. I’m 34. Anything specific I should ask in addition to the obvious questions?

My daughter has been dealing with constipation lately. Wasn’t sure if it is Risdiplam related or not. When she does poop and it’s soft it burns her bottom. She will get a raw butt quick. Any suggestions on how to help soften her stool? She turned one in December. She can eat soft solid foods by mouth and drink liquids by mouth. We have a gtube but do not currently use it.

Baclophen helps, are there any essential oils, to help the spasms to subside?