Yvette Haas

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]

I think you have summed it up well. Different people, different doctors, different research, different findings, different choices… And that should be okay. We should be able to live our lives and accept others while they do the same, differently.

I won’t speak for others, but personally, I follow the Merriam-Webster definition of the word “Research”:
1: careful or diligent search
2: studious inquiry or examination
especially: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical…[Read more]