Kelly Miller

My pain got to the point of no alternatives to pills was working, and marijuana was only for certain problems, SMA was not one. Unfortunately, I had to go to meds, and I have been comfortable ever since 2019 with no sleepy/sick/out-of-it side effects. I used to think I was a bad person for resorting to meds, especially with our country’s opioid…[Read more]

I developed severe hip pain around age 45-ish. I went to the MDA neurologist b/c I wasn’t sure if it was SMA related or just from sitting in a wheelchair for the last 40+ years. He told me that b/c I was part of a set of SMAers that was beginning to live longer for the first time, it was difficult to tell which caused the problem, the sitting or…[Read more]

I definitely think the brain is constructed in a way to keep us from reliving trauma. It’s how the brain protects the body from constantly going thru that heightened state over and over. As to why you can’t remember the good times, I don’t know. Collateral damage, maybe?

I can still remember my good childhood events and even some bad ones.…[Read more]

I hadn’t ever heard of Notion before you mentioned it Alyssa, but I’m going to check it out now!

My takeaway: Stop wishing and wasting time & energy on things you either can’t have or that won’t be the end all, be all after you get them. Take a minute to grieve what you’ve lost, then learn a new way to a path that can be equally rewarding with the abilities you have.

As SMAers, we’ve all learned to use “workarounds” to get things we can’t…[Read more]

I use ginger if the problem is nausea.

This column really hit home with me. I’ve had my g-tube and a SPC now for over 5 yrs, and I love both of them, even when they’re a little off. On the other hand, I just got my trach last January due to an emergency hospital stay. I didn’t get to make the decision, since I was in a drug-induced coma. My poor husband had to give the go-ahead b/c the…[Read more]

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.