@jiminmo
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Jim Schneider replied to the topic Do I Risk My Life for a New Wheelchair? in the forum The SMA News Today YouTube Channel 1 month ago
Demand they wear masks or find a new supplier even if it means a delay!
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Jim Schneider replied to the topic Looking to the Future in the forum Adults With SMA 1 month, 1 week ago
Hopefully a more forgiving world where the main belief is “Live and Let Live”.
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Jim Schneider started the topic Newbee dose 2 in the forum Spinraza 1 month, 1 week ago
I have received my first 2 doses and go for my third in 5 days. What should I expect? I’m trying hard not to get my hopes up too much but gaining back some of my recent loss in arm strength would be great. In reality just not losing anything else would make it all worthwhile. This October will be the 50th anniversary Of my diagnosis so it ha…[Read more]
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Jim Schneider started the topic Restaurants becoming more wheelchair friendly in the forum Adults With SMA 3 months, 2 weeks ago
The good news: the states that are allowing restaurants to reopen are requiring them to space their tables 6 to 10 feet apart. Just think be able to roll right through in your wheelchair without half the people having to move so you can get through. Finally be able to get to that good table by the window with a view of the lake. Sounds great ex…[Read more]
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Jim Schneider replied to the topic Hospital Folder & Advance Directives in the forum Coronavirus (COVID-19) and SMA 3 months, 2 weeks ago
I have a folder with a drug list, Doctor contact page with all my doctors info listed, full medical history and a list of procedures and major tests. It also has a will, power of attorney and medical directives. (Not really needed because after 45 years my wife knows me well enough to know what I want. Plus I told her I would come back and hau…[Read more]
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Jim Schneider started the topic Is Covid-19 stopping your Spinraza treatments? in the forum Spinraza 3 months, 3 weeks ago
I’m curious if people have been able to receive their Spinraza injections with the Covid-19 issues. I also would like to know if anyone just started in the last month?
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Jim Schneider replied to the topic To Schedule or Postpone Spinraza Amid Coronavirus Crisis in the forum Coronavirus (COVID-19) and SMA 4 months, 1 week ago
I was supposed to start with my first dose early this month in St Louis. I am also taking the anti-clotting drug Plavix that I will have to come off of a few days before hand. My problem is no one is returning my calls so I have no idea what is going on! I have been waiting over 6 months to get started and now a pandemic maybe somebody’s tryi…[Read more]
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Jim Schneider replied to the topic Coronavirus: To Fear or Not to Fear in the forum Adults With SMA 5 months, 2 weeks ago
Just don’t want to become one of the statistics with those nasty underlying health conditions. Hibernate till summer!
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Jim Schneider replied to the topic Exercising When You Have SMA in the forum Adults With SMA 6 months ago
From past experience I can tell you that too much exercise can “burn out muscle”. I lost strength after too heavy of a program recommended by a physical therapist. Now this was 30 years ago when a lot less was known about SMA 3. Heck it wasn’t even called that then!
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Jim Schneider started the topic Best Christmas Present in the forum Adults With SMA 6 months, 3 weeks ago
For Christmas this year my wife gave me a small lap blanket that plugs into the 12 volt lighter socket in the car. I didn’t even know they made such a thing, an electric blanket for the car! If your like me with feet and legs that are always cold this thing really solves that problem and my wife loves it because now I’m not turning the van heat…[Read more]
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Jim Schneider replied to the topic Smart Home Devices in the forum SMA Assistive Technology/Equipment 6 months, 3 weeks ago
My entire house is controlled by a HomeSeer automation system. Lights, Outlets, HVAC, TV & Audio, Drapes, Door Locks, Fish Pond, Lawn Sprinklers, etc. I have Echo or Google units in every room that talk to HomeSeer to control everything. Life is much easier with automation!!!
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Jim Schneider replied to the topic Protecting Your Wheelchair From The Rain in the forum SMA Assistive Technology/Equipment 11 months, 1 week ago
Always have a couple of bread bags in the backpack for the joystick. Have a huge oversized poncho that will cover me and the chair if it was really really bad.
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Jim Schneider replied to the topic What’s the Best Tablet For Reading? in the forum SMA Assistive Technology/Equipment 1 year ago
The Kindle Paperwhite is by far the best for reading books. Reading on your phone or tablet causes so much eye strain. Buy the kindle it is worth the investment.
Then download the “Libby” app to your phone so you can borrow digital and audio books from your library. You can actually borrow the book from the public library and tell the app to…[Read more]
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Jim Schneider started the topic Heart Bypass Surgery in the forum Adults With SMA 1 year ago
I am fairly new to this forum and I have found it interesting and informative.
It is really hard to find information on dealing with life’s “normal” medical issues as an Adult with SMA. Last year I had a surgery and it was discovered I couldn’t be intubated normally, my head wouldn’t tilt back far enough to get the tube down my throat! Since t…[Read more]
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Jim Schneider became a registered member 1 year, 2 months ago
Hey Jim, welcome! I’m Kevin Schaefer, one of the forum moderators, and I have SMA Type 2. Please let me know if you have any questions, and feel free to introduce yourself in the welcome forum. Thanks for joining us!
Hey Jim, welcome! I’m Ryan, one of the other forum moderators. Thanks for joining us.