I’m the worst.

I took 8 years to get into my “new” chair.

Personally, I can’t stand ENFit, and based on many posts on Facebook… There are a lot of people who are not thrilled about the swap.

The change has been coming for like 2 years, and we were all told it was going to happen, but then they didn’t do it for so long that we all forgot. Then, boom! It would have been nice if they had said “Okay.… Read more

The more you are able to help your immune system, the better prepared your body is to handle whatever life brings. That can be before exposure, after infection, and once symptoms appear.

How are you doing?

I highly recommend you start taking Quercetin and Zinc to help avoid getting sick. Most people have heard of Zinc, but you should not skip the Quercetin. It’s a Zinc-ionophore (it is the vehicle that brings the Zinc into your cells).

Hope you stay healthy.

 

My first thought was also humidity.

Are you using a heated humidifier?

I don’t think we have anything like that near me, but I have been able to share all of mine with people who will use them. I find that if I put them out on the curb, with a free sign, they almost always get taken by neighbors. Other times, I bring them to a local women who makes soups and other yummy stuff and sells them from her home. That… Read more

Really curious to know if anyone here, besides me, has not gotten any covid injections. I hope no one finds that to be controversial. It’s not. Everyone can make their own healthcare decisions.

I highly recommend asking them to NOT glue on the top layer of foam (typically 1/2” blue foam) until after you have sat in it and done any necessary shaving of lumps and for lumps. When you try it out, bring some pins with you to temporarily hold the blue foam on while you get in it. Also… Unless you want to feel like you are velcroed to the… Read more

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… 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… 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… 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… 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…… 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… 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… 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… 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… 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… 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… Read more

Some of my biggest concerns revolve around their mechanisms of action, the fact that they do nothing to stop transmission, their ingredients, the likelihood that they are pushing variants, the risk of ADE, the numbers coming from the countries with the highest rates of injections, increased viral loads, and their effect on one’s overall… Read more

Okay… I’ll be the outcast here who says that I did not get it and have no plans to do so. Disclaimer: I’m NOT an anti-vaxxer, and I have never been strongly against any injection before this year. Personally, I’m not getting this one because I don’t recommend it to anyone. Yes, I understand the risks… I have been researching it for 11… Read more

I know this may not be what you are looking for, so you might not have an answer to my question, but I wonder if there will be a surge of nurses and caregivers who have not gotten the covid-19 injection, and will be looking to transition into doing private duty work.

I recently finished Before We Were Yours, which was fantastic.

And like Alyssa, I get my audiobooks through Libby (which is free and uses your library card to borrow books).

I’ll soon be upping my vitamin D3 dosage, and I am fully stocked on all of my immune-boosting supplements.

I prefer using the plunger. More control over the flow, less chance of spilling or clogging.

Public restrooms don’t make ANYTHING easier, especially during a week where bathroom trips are already more complicated. Luckily, I very rarely have to use a bathroom that doesn’t have a big counter for me to transfer to, before and after being held on the toilet, but I understand your concern. Unfortunately, I don’t have any magic tricks to… Read more

I get Liquid Hope from Coram as well. When I first started getting it, Coram did not stock it at the “local” distribution building, but they had it at their national warehouse and sent it out from there. I would get all of my supplies like a day or two after ordering a shipment, and then the food would arrive a day later. I think they might… Read more

I forgot to mention… I switched DMEs in order to get my food, but I think you might be able to work with the people at RFB directly. I know you could a few years ago. Julie (the original owner) was extremely helpful and worked hard to either get more DMEs to carry it or send it directly for the company. I’m not sure if they are still doing… Read more

So glad you are trying something that will probably be a lot better for you! I do half Real Food Blends and half Liquid Hope, and I’m much healthier than I was with formula.

You have a few options for administering it:
– If you want the most simple option, I’d suggest doing it with a big syringe. Since you are used to gravity feeds,… Read more

Based on your idea, you might want to look into getting some Instamorph or Sugru. I’m thinking you could maybe make a whole contoured platform from Instamorph, OR adding some ridges to what you already have with Sugru.

I keep seeing things that say people can still get and transmit the virus, even if they have gotten the shots. Have you heard anything about this?

I was under the impression that it can never be over the limit for more than a month. BUT… I’m not positive if that was for Madicaid or for my PCA Waiver Program through the state.

When I switched to a Purple Mattress, my need to be turned in the night decreased. I used to need to be moved a bit about halfway through the night, but now I usually sleep through the night.

I have not tried it yet, but a friend recently recommended joshin.com

Another one I have not yet tried, but plan to soon, is quadjobs.com

Good luck! (Luck is typically the best method when finding good PCAs)

If you have trouble with the humidity condensing, try covering the tube. They do make tube covers, but I just put a little blanket over most of the tube once I’m in bed.

 

Just curious… Have you reported your symptoms?

The only way science can be advanced, and people can know what is going on, is if all reactions are documented and the statistics are accurately reported.

Based on all of the current results, findings and leaks, I have no doubt that your symptoms are being caused by the injection. I will not be getting it, and I highly recommend everyone do some deep research of their own, even if they have already gotten it.

I have definitely always wanted to be Matilda.

After reading that your new wedge is what is causing the issue, and that you used to use a black towel…. My first thought is that I would make a few zippered or velcroed covers for the wedge, and just swap it out as needed. I’m big on being mostly surrounded by cotton, as synthetic materials are never great with sweat. Just make sure you… Read more