mark-pratt
Forum Replies Created
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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 bipolar disorder (manic-depressive illness) and helps prevent migraine headaches.
But for whatever reason it helps people with SMA maintain muscle strength. I know a couple other of his patients also on it and feel worse when they go off. I’ve never had side effects and because it’s FDA approved; it can be prescribed extra-label.
Of course, always consult your physician before taking anything new.
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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
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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.
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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
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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, and I’ve seen good improvement in some of my younger SMA friends on Evrysdi. When you get tired, try some breathing or meditation exercises to help your body relax. I’ve found them very helpful.
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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.
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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 can individually be adjusted until hopefully you’re comfortable.
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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 growing up without curb cuts, accessible schools, restaurants, theaters, hotels rooms, handicapped parking, lower-floor minivans, among many other items. I got a college degree, a job, married and raised a family without most of the things many of you take for granted today. I didn’t do it to become an “inspiration” for someone else, I did it because I wanted a life and the only way to get it was to fight through those obstacles.
Also remember all those who fought for your rights of accessibility. And don’t forget to keep fighting for continued improvement, like the Air Carriers Access Amendment Act 118.
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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.
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This is excellent.
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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.
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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.
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Vicodin. If one doesn’t help, take two.
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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 the same lot. So my insurance company is paying $12,000 per bottle and expecting 12 doses when I’ve only getting 11. Not sure how long this will go on before they catch on. The folks at Evrysdi said it’s been reported to the highest levels but still no change. Anyone else having this problem?
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Second Pfizer shot weeks ago, no problems.
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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 heartburn. Way too early to tell if I’m going to get any benefit from it but I feel fine. I’m age 65 male, type 3.
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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 see what other people are doing, how they’ve adapted, learn and make new friends. Check out our website http://www.powersoccerusa.org.  We can put on an introductory clinic in your area if enough people are interested. Or you can contact me, I’m Deputy VP of the organization. [email protected]
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Thank you Robin, I just did.