A few years ago, my neurologist performed a study on the effects of Divalproex (tradename Depakote) on his patients with SMA. I was in the initial study. I’m 68-year-old Type 3.

Depakote is an FDA approved drug, an anticonvulsant that works in the brain tissue to stop seizures. Divalproex sodium is also used to treat the manic phase of…

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Micaela,

We’ve been looking for automated blinds. You stated you used Homekit and Matter. I’m not familiar with these. I use Alexa and also have a Smarthings router for my door lock. Do you know if this product works with other apps? These are pretty common.

Mark

The older you get; it truly is harder to stay warm. I also have a lined poncho and use a heated lap pad that plugs into my chair that keeps me warm underneath. I don’t use it in the van because it’s hard to get the seatbelt on. It really makes a difference if you can wear some type of glove, but not everyone can.

I have a large heated pad that fits under my keyboard and mouse and keeps the whole area very warm. The on/off switch works with the lightest touch, it has 3 settings, but be careful it can get very hot, I only use it on low

Living with type 3 for my whole life, you really can’t build strength, but I’m able to build endurance. Push yourself a little further to help build that endurance. Are you taking Evrysdi or Spinraza? I’ve been on Evrysdi for 1.5 years, at 68 it hasn’t increased my strength, but my breathing has gotten better. I believe you’re younger,…

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The uptick is also caused by a new variant. It’s important to get the booster which has just been approved by the FDA. Get your influenza vaccine at the same time and protect yourself this winter.

I recently got a new chair, and the backrest is a Tarta ​​ (tartadesign.it). It’s hard to describe but it has several small pads up the center of the backrest and four wrap-around pads on each side. Each one is individually adjustable. I’ve only had it a few days, but it holds me securely on position. The nice thing about it is each pad…

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Thank you Robin, I just did.

I’m another 65+ person who has had SMA all my life. I’ve dealt with the “compliment” many times in my life. I don’t think I’ve ever been annoyed with it. Those of you under 30 have no idea of what we had to go through to get where we are. The ADA wasn’t signed until 1990, and it took even longer for accessibility to catch up. Imagine…

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Like everyone else, I got very used to staying home.  But now I’m going out more and more, actually forcing myself to do the things I used to do.  Now that I do, I find that I’m much happier mentally.

This is excellent.

Good for you.  Those Evrysdi coolers mount up fast and we were also fortunate to find a recycler in my area that will take them.

 

Interesting show.  I’d be more interested in the 10-year-old disabled actor.  This one of the falls best new shows since This Is Us.

 

Vicodin.  If one doesn’t help, take two.

I’ve been on Evrysdi for three months and have had no side effects.  My issue is that every bottle has been 1-2 cc short of the full twelve doses.  We measure the dose carefully, my wife is an RN so she know how to fill a syringe.  I contacted my PAC and was told to always take a full dose and don’t mix doses from two bottles even if they are… Read more

Second Pfizer shot weeks ago, no problems.

It’s like drinking 6.6ml of strawberry flavored water, or about one and one-third teaspoon.  I too was a little anxious prior to that first dose, but there is no aftertaste and you chase it with a swallow of water.  About as easy as it gets when taking medication.  I’m on my third week and have had no adverse symptoms like diarrhea or… Read more

Have you looked at power soccer?  It is the only sport specifically for persons in power wheelchairs, though you don’t need to be a power chair user to play.  It is a truly competitive sport played locally, nationally, and internationally.  Better yet, it is a great way to meet people with a variety of abilities and their families.  You get to… Read more