Robin C

That might be one of the most interesting and “real” questions that has ever been posed here. Honestly, I don’t have a great answer for you, but I do have a lot of experience with the circumstances. You’re welcome to private message me if you’d like to talk more.

I do one every morning, before getting in my chair. Always have, since I was little.

Insulated lunch boxes 🙂

Are you using a pump? If so, I have seen lots of cute modified lunch boxes. You can get them on Etsy. They will keep your food cold AND keep the pump looking good in public.

Absolutely. I either do, or would do, at least half of those things to treat most viruses or bacterial infections… Or take prophylactically.

As soon as symptoms start:

NAC 500mg 2-3x/day

Biotin 8mg 2x/day while infected

NanoSilver 1 tsp per day

L-Lysine 500 MG 2x/day. Helps to prevent shingles and herpes sores while fighting virus

Aspirin 81mg-325mg/day (or Nattokinase 2-4 tablets 2-3x/day)

Chestal

For Nebulizer: (I need to find the recipe)
Saline
Food-Grade…[Read more]

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Honestly…. You might end up regretting asking for this list, as it’s super long. I have at least half of the things in my cabinet, and I do a handful of them every day. The list makes me look paranoid, which I’m not at all. I just feel better being prepared before what could be a time of stress. And I slowly built this list over several months.…[Read more]

I like someone who has experience, but is also willing to do things differently than they are used to. For a GP, I can definitely handle teaching them what they need to know about SMA, but I prefer to have a pulmonologist with SMA experience. Either way, though, I tend to go a bit out of the box, so I guess personality is the most important thing…[Read more]

Sounds like I’m in the same boat as Ajay and Alyssa. I’m wearing the brace I got when I was 14, and I’m now 30. We tried to make a new one about 10 years ago, and over the course of a couple of years and many long appointments, we ended up scrapping at least two full braces.
Over the years, as my breathing muscles have gotten weaker and my posture…[Read more]

Hey Anna! I use my phone exclusively with switch control and would be happy to answer any questions you have. I have some experience with switches on iOS, but my phone is an Android, so that’s the one I know best.

I will try to check back on this thread, as I can’t figure out how to get notifications from follow-up replies to actually work… But…[Read more]

Time to start learning about some of the great Paralympic athletes who will be competing, so you’ll know who you want to cheer for.

I like to have several months’ worth at all times, so that when they mess up (which they all do), I don’t have to worry.
That often means saving the things I use slightly less than I receive (but still ordering by the “correct” date) or swapping supplies with other people. There are lots of groups devoted to such transfers online, and some are…[Read more]

My budget is currently for 67 hours, with some room for more if I drop weekly PT visits at home. (Technically, I did drop that last March, because I didn’t want her going into multiple homes every day and then coming to my home… But I didn’t request more hours because I don’t need them right now).

Some of these are really cool! Thanks!

That sounds terrible! I’m sorry you are not being helped! I find it odd that they would need the chair for more than a few hours… I’ve never had to leave it overnight. They either send out a tech and fix it at my home, or I bring the chair to them and I spend a few hours waiting. Sometimes it’s just a few minutes. I’m really surprised that they…[Read more]

I also have PCAs though Medicaid. In Connecticut it’s called the PCA Waiver Program, and the rate has gotten better in the past couple of years. I think it’s around $15.75/hr now.
You may want to think about starting the process now, since the waiting list is often a few years. Also… While it’s probably better to start getting used to hiring,…[Read more]

Essentially anything can be justified, since they allow for anything that betters your life. Tires on your van is a complete non-issue, since you need the van to get to doctors’ appointments. But you really can do almost anything if you can say how it improves your life. Example: going on vacation.

What kind of switch was it? Yes, you should let them know that you need a new one… But don’t get rid of the old one. Depending on what is wrong with it, it’s probably fixable. Then it can be kept as a backup. You know I’m a bit switch-obsessed… So I have several backups of a few types. And I made a few this week (trying out some new designs).

I’m obsessed with the one I got for my wheelchair and I don’t understand why the wheelchair reps don’t let all of us know that they exist!!! I didn’t have one until 2 years ago, and I seriously can’t live without it now. It lets me drive without my hand getting cold (and then not able to move) in the winter, and I have gotten to the point where it…[Read more]

I also love coloidal silver for all open wounds, but I have never used the type shown above. It looks like it would be super convenient for a pressure sore, because it’s already in gel form, but if you have an option, get one in a higher silver count. That one is 24ppm, whereas the spray I got at the health food store is 250ppm. Not saying 24ppm…[Read more]