[yvette-haas]

I’m the worst.

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

[yvette-haas]

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. It’s happening in 6 months. Get ready!”

I have not made the switch yet, as I have a lot of the old supplies, but my friend highly recommends getting a little tool. She said that it saves her fingers because sometimes it’s really difficult to undo the connection. Go to Etsy and search “ENFit Wrench”. Seems like that might be exactly what you’re looking for.

 

[yvette-haas]

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.

 

[yvette-haas]

My first thought was also humidity.

Are you using a heated humidifier?

[yvette-haas]

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 way she can pack each person’s order before they come to get it and they don’t have to bring their own cooler.

 

[yvette-haas]

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.

[yvette-haas]

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 seat… Bring a garbage bag or a silk shawl to lay over the foam. When you get it close to perfect, THEN they can start sewing the cover, and that will make it easier to hold everything together while you work on the final tweaks.

I also highly recommend ordering your own little foam shaver. They are less than $10, and make it soooo much easier to make smooth edits, just a millimeter or less per swipe, to the harder white foam. I’m not going to include a link because sometimes that delays the comment, but look for a “Stanley Surform Shaver”. I can’t imagine how many years of appointments I would have needed if I was not able to work on my new molded seat at home.

And before they make the seat cover, ask to feel like material options. Last time I did mine, I believe they had 2 types of material, and one was reversable (one side is more slippery than the other).

Good luck!!! I don’t need a new one right now, but I’m already dreading when I will. No matter how picky, annoying, frustrating, or demanding the process may make you feel, I promise I’m worse. Just take your time and keep working on it until it’s both comfortable and functional.

[yvette-haas]

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.

 

[yvette-haas]

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

[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.

[yvette-haas]

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. It really came in handy in January, when 12 of my closest friends and family members got covid and were coming to me for recommendations.

I should also ad that I did not put a few things on the list, which I do recommend and I personally have a script for, as I tried to keep this list prescription-free.

[yvette-haas]

Pre or Post Exposure:

ImmuneMist

Take these together:
Elemental Zinc 25mg 2x/day for 2-3 days, then 7mg 2x/day
Quercetin 250mg 2x/day
Vitamin C 1,000IU 2x/day or 1,000-2,000mg 4-6x/day

Vitamin D3 5,000IU/day

Take these together:
Curcumin (Turmeric) 500mg 2x/day
Raw Honey 1g/kg daily

Elderberry Extract 600-1,500mg/day

Either germ-killing mouthwash or diluted peroxide:
Gargle for at least 30 seconds at least 2x/day

Any nasal spray that is Budesonide-based (like Rhinocort):
Follow instructions on package

[yvette-haas]

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 Peroxide
Iodine
Every hour or two

Move a lot. It will feel worse at first, and then better. You will probably feel bad when you first wake up in the morning. Get moving. And take deep breaths in and out.

[yvette-haas]

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 for me. If they are not willing to listen and adapt, my anxiety skyrockets.

[yvette-haas]

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 has gotten worse, making a brace that allows me to breathe, does not cause sores, anddd does anything to hold me has become increasingly impossible. After a while I felt bad going to the same guy over and over. He was great and had helped me since I was a small child, but he just couldn’t get it done to my new needs. I just moved to a new state, close to a very good hospital, so I’m considering picking up where we left off a decade ago. Maybe fresh eyes and advanced technology is what I need.

[yvette-haas]

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 you are welcome to private message me too (those notifications work).

[yvette-haas]

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 just for us with SMA.

[yvette-haas]

Some of these are really cool! Thanks!

 

[yvette-haas]

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, training and working with new PCAs, there is a good chance that you can put one or both of your parents on the books for helping you.

[yvette-haas]

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?

[yvette-haas]

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

[yvette-haas]

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.

[yvette-haas]

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).

[yvette-haas]

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 are not saying that for you. Perhaps you can ask how long the work will take, and say that a loaner will not work for you.