Kelly Miller

I appreciate your column on this, however I must be the oddball in the group because I never dreamed, or thought about it for that matter, of a cure, treatment, or walking. I guess my parents instilled in me at a very early age an identity as a disabled person. In my 20s and 30s, I questioned that approach and even got a little angry at the…[Read more]

Another vote for overheated! Just last night I stayed out in the cold with some friends, and I could barely drive my chair back to the van. I would do anything to not be cold!

Lupa, that’s another extremely frustrating aspect of the whole thing. I can’t decide whether to cry or scream when I clearly know how to do something, and would be happy to tell someone how, but I can’t do it myself b/c of strength and mobility issues!

You’ve fought a hard battle, and you deserve a few screams for a positive outcome. Congrats!!! Insurance company 0, warriors with SMA 3,000,000,561, and counting.

I totally get what you’re saying DeAnn about not knowing where to draw that line between getting what I need and asking for too much. Family doesn’t like taking money unless it’s a huge job, so how do I show my appreciation for those smaller jobs that seem to pile up? I’ve found that when I want to give thanks for several things somebody has done,…[Read more]

This one hit me because I’ve had to fight off family and friends to get what I wanted. Swimming in a pool or the ocean isn’t worth all the hassle and, more importantly, the fear involved. Really getting in any body of water meant for recreation is not something I’m willing to do. I’m terrified of getting in the water and fear my head will go…[Read more]

They just released studies showing the expected results from Evrysdi aren’t going to come for 1-2 yrs. I didn’t take Spinraza, but I’ve been on Evrysdi for4 months now. My husband thinks my breathing has gotten better, stronger, and we’ll find out Thursday when I go for a pulmonary function test. I feel stronger in one of my feet and my trunk…[Read more]

I think it should help if you’ve even gotten your 1st vaccine shot. My husband read that several countries in Europe have discovered that aspirin, just plain aspirin, reduces the Covid symptoms and keeps people from getting so severe they end up on vents. Worth a try. I don’t know why we haven’t heard about this, except the docs here push Tylenol.

On my way to get 2nd next Wednesday. No problems with 1st.

Mine was also a big nothing. I didn’t take anything going in, and I had no symptoms of any kind afterward. The only thing was my arm was sore for a few days. I had the Pfizer.

It will be to go downtown to our old part where I live in St Augustine, Florida. There are all sorts of shops, places to eat a variety of treats, and the people watching of tourists from all over the world is never-ending!

I’m so sorry you’re having trouble with your fwd on your new chair, DeAnn! There’s nothing worse than the excitement of a new chair being squelched by a major problem like how it drives. After 10 yrs of mid-wheel drive, which I loved (sorry), I also had to go to fwd. I had the exact same issue with those stupid little wheels on the back. I also…[Read more]

I didn’t know they were married! How cool. I got a little tired of it these last couple of seasons, but it was good before that. We just got done with The Crown. Even my husband liked it. Or there’s Yellowstone, or Killing Eve.

Florida just opened up for those with all pre-existing conditions, and Mayo, where my doctors are, started giving the vaccine. I got an appt for March 5th, receiving the first dose of the Pfizer brand shot. It went off without a hitch, and the only side-effect I experienced was a sore spot on my arm for several days. I’m due back for the 2nd dose…[Read more]

I’ve seen a dietician one time, and that’s all I found tolerable. I tried getting information regarding switching from my formula due to severe stomach pain that had developed over time with this same fiber-rich formula. She didn’t want to acknowledge at all that it could be the extra fiber over the previous year causing, not only my pain, but…[Read more]

Hey Kevin, is this Jeremy Camp the Christian singer???

What about a really cool backpack or side bag?

I’m so sorry Alyssa, and I definitely feel you! One of my best friends just told me that she’s not moving here near me in Florida, but she’s decided to go to another state. Still a 14-hour drive away, just like where she lives now. I’m not doing as well as you with encouraging her toward her new place. It makes me sad and a little angry because we…[Read more]

I got it didn’t see your link to it. I would point out they already approved someone on a vent f/t, with no plan for measurement, and is in her 50’s. I though the people decided, Accredo?

What’s your Twitter name?