Chelsea Chandanais

I had a rash that was mostly on the top of my left foot and very itchy. Benadryl did not help and anti-itch lotions only took the edge off for a short time. I let my PAL know so that she could report it and also sent my neurologist a message, but I am allergic/sensitive to just about everything, so, while they both agreed that there was the…[Read more]

In addition to SMA, I have severe asthma and I can’t handle a mask either. I had to wear one once before all this started when I was at the doctor for a particularly bad case of bronchitis several years ago. It was way too hard to breathe, but I thought maybe it was just because I was sick and my asthma was flaring more. So, I ordered a mask and…[Read more]

I take Albuterol Sulfate tablets rather than liquid Albuterol for stamina. I started it in November and haven’t noticed any more tremors than I have always had. I have severe asthma and use 2 inhalers daily plus a Xopenex rescue inhaler and 3 different nebulized medications daily: Pulmicort, DuoNeb, and Xopenex (I was switched from Albuterol to…[Read more]

If Risdiplam is approved, I plan to switch. I have gotten spinal headaches after every Spinraza injection and the last two required blood patches. Before my last injection, the radiologist said that if I still got a spinal headache despite him trying an atraumatic needle, he would try not removing any CSF next time. Even if I don’t get a spinal…[Read more]

I am starting the process to get my first wheelchair and I am a little nervous. I have done some research and I am hoping that I will be able to get the new Quantum Stretto with iLevel.