What are using for door openers?

I’m really interested in the heated or lined poncho’s and heated lap pads. Any suggestions or links on where to finds these would be helpful. I have really come to hate winter!

I had to put my 10 year old Lab to sleep yesterday. She has been my constant companion and comforter and I will miss her greatly. When I was hurting or just not feeling well She was always there for me laying alongside my wheelchair and keeping watch. The irony in all this is a couple years ago she developed a neurological condition where…

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No I don’t support businesses that haven’t made any attempts to make their business accessible.  But I always try and let them know my family, friends and I will be going elsewhere with our money.
What really irritates me is the business that makes no attempt to meet the ADA law.

You know your body better than anyone and sometimes you have to MAKE them listen to you.

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… Read more

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… Read more

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… Read more

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… Read more

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.

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.

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.

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?

 

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… Read more

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… Read more

Alyssa what are they?  They look really warm.

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!

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

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… Read more

Demand they wear masks or find a new supplier even if it means a delay!

Hopefully a more forgiving world where the main belief is “Live and Let Live”.

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… Read more

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… Read more

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… Read more

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?

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… Read more

Just don’t want to become one of the statistics with those nasty underlying health conditions. Hibernate till summer!

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!

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… Read more

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!!!

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.

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… Read more

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… Read more