I’ll be honest with you, I don’t think it would be particularly helpful to the world in general. I think the only people who would notice there was a disabled person on the floor of the stadium would be other disabled people. There would be a lot of hullabaloo made over the one person who they would choose to represent. They would make a fuss… Read more

I also have an overabundance of supplies for the inevitable mess ups by the DMEs. I’ve had to fight often with one of them (Edgepark) over my spc supplies. It’s a headache and I get angry b/c they can be very stupid. But for every time they messed up, my other DME (Coram) does a great job with my feeding tube stuff.

 

I have to say that I don’t think anyone should stop with the dating sites, but they don’t have to be traditional like OKCupid or any of the others. I think everyone on here is worth talking to and has a plethora of things to say to anyone. I’ve been married for 24 1/2 yrs, and I met my husband online back when chat rooms were a big deal. There… Read more

I don’t know, but I’d like to for on trips. Let me know, Alyssa, when you find out. (You know, you can search in the Facebook groups for the article or post.)

 

The amazing solution of readers to me. I’m going to get my optometrist to prescribe them for me immediately! And the 12-days of Christmas cookies sound good on saltine crackers too!

Absolutely, I want to avoid the hospital too! I don’t have any new, earth-shattering ways I treat colds and flu. I use vitamin c and zinc. I put essential oil blends on my chest with a carrier oil. No matter how much I don’t want to, I make myself go outside to sit in the sun for at least 20 minutes. Cold-Eaze and Theraflu work pretty… Read more

Well, I’m going to watch it now for sure!

 

One of the things they worry about is blood clots b/c the birth control can cause blood clots. Talk to your Dr about her concerns, don’t just guess, then you can make an informed decision. I will say I was on first the pill, then a brief stint with the Depo shot, and finally switched permanently to the patch. I was on one form or another for… Read more

I’ve also not been impressed with nutritionists. Unless you get one who specializes in SMA diets, it’s been my experience that they are much like every other field from the medical realm, hit or miss. I gave up on the “professionals” after a couple of different ones just looked at me blankly. But that’s not to say you can’t find one that works… Read more

I just got a new Quantum Edge 3 with iLevel after having a Permobil for 5 yrs. I had to get the settings changed with a programmer. That isn’t something you get routinely. My wheelchair guy had to make those kind of changes for me. I’m sure there’s a way to get a programmer, but you’d have to go outside of the standard Permobil products.… Read more

My RT just told me last week that it’s a small subset of users who need to be concerned about it. He said it’s those who use the machine So-Clean or something similar. I think that machine uses something special to clean tubing from BiPAP and C-PAP machines. In older Trilogies, there’s no filter between the machine and tube to the mask. The… Read more

I don’t know the answer, but to me the explanation the girl gave you makes sense. If you’ve lost muscle mass due to atrophy, it would be easier to hit the bone. And let me say if you’ve never had the bone hit, it hurts like crap! I wouldn’t worry about the shot not being effective. I think whether they pushed the needle all the way or part of… Read more

I’ve found that silver works really well. A wound care team used a prescription form once when I was in the hospital. If you don’t want to go that route, there’s Manuka honey. I’ve gotten both from Amazon. Here’s the silver I get, but there are several:

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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… Read more