Kelly Miller

My point about those was that I didn’t just say eenie, meenie, mini, moe to pick which I wanted to do. I read the material you’ve so graciously provided back then. I spoke with Reps from the companies, and I thoughtfully considered the methods of application. All of this was done before I made the decision as to which I wanted to take. Not only…[Read more]

One of the things I’ve always liked about this forum is we’ve been able to express our opinions about anything, especially medical, without fear of repercussion or being attacked for those opinions. Like several of you have already spoken here on this topic, I have strong ideas/opinions/preferences about this. I’m going to try very hard to keep my…[Read more]

I’m reading, “The War for Gloria,” about a woman who has just been diagnosed with ALS. I usually stay away from books about disabilities because after all, I already live that life. That’s just my preference, but this fictional story is told from the perspective of Gloria’s 16 yr old son who she raised on her own. He struggles with trying to help…[Read more]

I just poor it in the syringe and it drains down. It’s just like your gravity only much faster. If you’re worried about speed, I would suggest doing it the way Yvette does with the syringe. She uses the plunger to push it in. That way you have total control over speed and amount. It’s also easier to keep from getting clogged. My syringe for bolus…[Read more]

I am, thank goodness, finished with all of that! I actually started going thru menopause sometime in my 40s and by 52, no more periods. When I was of such an age, I tried the depo shot that had just come out. Unfortunately, I was in that very small percentage who continued to still have a period. In fact, I got to have mine EVERYDAY for a month…[Read more]

Okay, I would be that other community member Yvette was referring too. I’ve been taking RFB now since around 2016 when my stomach just suddenly stopped tolerating the usually nutritionist recommended formula. Let me clarify. Most traditionally trained nutritionists don’t have a clue about the formula needs of someone with SMA. I started taking RFB…[Read more]

Yes, it’s an actual thing. Last week Biden gave a speech with his plan on mandates. One you might find particularly interesting is that any facility or agency that receives funds from Medicare and/or Medicaid is required to require their employees who take care of patients to not only wear masks but also get vaccinated. There are nurses all over…[Read more]

DeAnn, I feel like it’s always in your best interest to complete the forms b/c A. it looks good that you’re trying to participate in helping the Claims Rep (CR) to do your info (despite popular opinion, CRs do have hearts and generally remember their clients, especially if they stick out for either good or bad reasons), B. the info in the letter…[Read more]

The main thing s you have to worry about are Substantial Gainful Activity (SGA) and Trial Work Period (TWP). Let’s start with Twp.

“During a trial work period, a beneficiary receiving Social Security disability benefits may test his or her ability to work and still be considered disabled. We do not consider services performed during the trial…[Read more]

I’ve never been a big fan of any of the collection of “Pride” months we seem to be overwhelming our calendars with. I feel like it serves as a way to separate the people of our country by pointing out the differences that others do not care to celebrate. The people who usually participate in rallies and awareness events are, for the most part,…[Read more]

Alyssa, thanks so much for posting this! It’s a spark of hope that’s long overdue.

I believe they make a version for Mac, but I’m not 100% sure. The physical version is usually a little more expensive than the downloaded one. I got the downloaded version and had no problem adding it to a different computer when my old one died. They keep track at the company of your purchase, and you can even go online to see the date. I had a…[Read more]

I used Dragon NaturallySpeaking for 20 years before I had to get on a vent 24/7 last year. It is the absolute best when it comes to speech recognition. It has no equal in its ability to do everything a regular mouse can do on top of being able to discern what you’re saying. One thing I would recommend with any of this type of software is to invest…[Read more]

Has anybody looked at any of the info on all the things happening to people who have had the “vaccines?” My husband refuses to get it. I will NOT be getting any boosters!

I’ve also not had my usual bouts with pneumonia since starting Evrysdi in December 2020. I feel like I have more energy and less issues with allergies and colds. Unfortunately, I found out today that my insurance has denied my continued use on my recert. My Dr is filing an appeal, so we’ll see what happens.

I use Zyrtec after trying Claritin. I think it’s all a personal preference and whatever works for you best.

Someone has been brushing my teeth for me for the last 27 yrs. It was first my mom and now my husband. We use an Oral B electric toothbrush, the one with the round head b/c I feel like it fits in my mouth. There are several kinds and shapes of electric toothbrushes out there, and they’re not expensive. Find one you like for somebody to help you.…[Read more]

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]