Kelly Miller

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 and…[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 was…[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 well.

We…[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 20+…[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 for…[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. That’s…[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 tube…[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 the…[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 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]