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Jim Schneider replied to the topic Thoughts on Covid Boosters in the forum Coronavirus (COVID-19) and SMA 1 month, 1 week ago
Going on our first real vacation since Covid started in middle of June for 2 1/2 weeks. Plan on getting the booster end of May so it fully effective by the time we leave. I think it is smart to get it sooner rather than later if your planning on travel or going to any events where there will be crowds. With SMA on board you shouldn’t have a pr…[Read more]
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Jim Schneider started the topic Medical Marijuana in the forum Adults With SMA 2 months, 2 weeks ago
Back in my younger (50 plus years ago) when smoking a joint was a common event my doctors had me on various “experimental” legal drugs so that I never got around to trying anything being passed around. Now it’s legal (with a card) and I am wondering if it might be a better answer to the extreme muscle cramps I have been dealing with.
Does anyone…[Read more]
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Jim Schneider replied to the topic To be vaccinated or not to be in the forum Coronavirus (COVID-19) and SMA 7 months ago
First talk to YOUR doctors and ask their opinion. Second the 2 main vaccines don’t use a live virus so that isn’t an issue. From my research the most common side effects if any are sore arm, slight fever and feeling really tired for a couple of days. Me personally as a 50 year survivor of SMA and one of the high risk elderly, I just wore o…[Read more]
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Jim Schneider started the topic What is everyone hearing about getting a BOOSTER in the forum Coronavirus (COVID-19) and SMA 8 months, 2 weeks ago
I received both of my Covid vaccine doses as soon as I could and felt like I got my life back. Unfortunately so many people have refused to get the vaccine that Covid is still going strong and worries are back again.
I haven’t heard anything about whether SMA people qualified as immune deficient and qualified for a booster shot now.
Anybody…[Read more]
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Jim Schneider replied to the topic Insurance (Medicare) Coverage in the forum Roche and Genentech- Evrysdi (risdiplam) 12 months ago
Now that this has been out there awhile, is anyone taking it that is on Medicare? How is it covered? Have a call in to the PAL rep but haven’t heard back.
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Jim Schneider replied to the topic Ghosted by the Wheelchair Guy in the forum SMA Assistive Technology/Equipment 1 year ago
Call AT LEAST once a week. After this long it is past time to start up the chain of command until you get to someone that will make it happen. I have plenty of time on my hands to be a real pest and that seems to be what it takes sometimes.
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Jim Schneider replied to the topic Voice Access on Android 11 in the forum Adults With SMA 1 year, 5 months 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 year, 5 months 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 year, 6 months 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 1 year, 6 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 1 year, 6 months 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 1 year, 7 months 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 1 year, 8 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) 1 year, 9 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 1 year, 10 months 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 year, 10 months 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 year, 10 months 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 2 years 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 2 years 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 2 years, 1 month 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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