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Jim Schneider replied to the topic Voice Access on Android 11 in the forum Adults With SMA 1 month, 1 week ago
Between voice access and Google Assistant I am able to do anything I want on the phone without ever touching it! Google is doing unbelievable things for the disabled community, check it out.
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Jim Schneider replied to the topic Steps Taken for Evrysdi Approval in the forum The SMA News Today YouTube Channel 1 month, 2 weeks ago
As I’m on Medicare with a supplemental and a drug policy I have been concerned how this is billed. If it is as a drug and is billed to the drug plan I would be out of luck. My Spinraza is billed to Medicare part B and is paid but my drug policy isn’t going to pay anything.
Anyone else in the same predicament?
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Jim Schneider started the topic New Holiday Schedule for 2021 in the forum Adults With SMA 1 month, 3 weeks ago
I posted this yesterday on Facebook for my family and friends and I thought it was worth repeating here.
Let’s make 2021 a fantastic year with extra holidays and family get-togethers. 2020 needs to close without any more of us getting sick with the Covid! We’ll just move this year’s holidays to next summer: May is Memorial Day; June is Thank…[Read more]
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Jim Schneider replied to the topic X-Ray Frustrations in the forum Adults With SMA 2 months ago
Unfortunately the last few years I have had cause to be transferred many times. When the hospital calls to confirm an appointment we always inform them we will need a Hoyer lift to transfer. I bring my own sling along because it works better than theirs. I refuse to allow transfers by lifting me, been hurt before and never again. More and mor…[Read more]
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Jim Schneider replied to the topic Keeping your feet warm in the forum Adults With SMA 2 months, 3 weeks ago
Alyssa what are they? They look really warm.
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Jim Schneider replied to the topic Phone Challenges in the forum Adults With SMA 3 months, 2 weeks ago
Google Pixel phones have a voice access feature built in that lets you totally control the phone by voice. You can do everything totally by voice. It works great!
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Jim Schneider replied to the topic Service Dog Saga Part 1: Adventure Awaits in the forum Adults With SMA 4 months ago
What did you have to do to qualify? Do you have to live in a certain area for them to provide a dog. How long is the waiting list time? Hope everything goes great for you in the training.
Good luck, Jim
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Jim Schneider started the topic Insurance (Medicare) Coverage in the forum Roche and Genentech- Evrysdi (risdiplam) 5 months ago
During the CureSMA webinar on Evrysdi they indicated Medicare coverage would be under Part D due to it being a take at home medication. I don’t know about anyone else but my drug insurance barely covers much of the cost of Name Brand drugs so I’m not sure I could ever afford this at $340,000 per year. Drug co-pays are really going to limit a…[Read more]
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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 6 months, 1 week 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 6 months, 2 weeks 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 6 months, 2 weeks 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 8 months, 3 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 8 months, 3 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 9 months 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 9 months, 2 weeks 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 10 months, 3 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 11 months, 1 week 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 11 months, 4 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 12 months 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 1 year, 4 months 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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