Dennis Turner

Down vest!

Yup, done. Nothing worse than feeling awful if you can avoid it.

My chair.  My bed is truly a torture device after a few hours, but I can adjust my chair to make it more comfortable by tipping it back.

I have and do use a poncho.  Hate it and don’t find it very helpful. Usually I end up with plastic bags covering my joystick and my lefthand positioning control (bread bags work well).

My understanding is that these are the most vulnerable pieces in terms of moisture. But again, what do I know?

Can’t say I have had heart bypass, but anytime you are restricted in your activity levels I would expect to lose muscle tone which may or may not come back.

I am close to your age and am starting to experience typical age related issues not directly to SMA. In the past few years I have needed treatment for prostate cancer and swollen legs from…[Read more]

For me, kindle. I have a really old kindle, prior to the paperwhite, no touch screen, no nothing, but it is light, runs forever on a charge, and syncs with my phone so I can read anywhere, anytime.

My oldest son went with the nook since he was working at a Barnes and Noble and his needed to be replaced 2 or 3 times before he caved and bought a…[Read more]

Ryan, I was also diagnosed using electrical transmission.  In fact I have been tested this way 4 times, the last time my Neurologist said wait a minute, I have to have all the student interns see this! So she left me laying naked on the table with needles and wires sticking out to get them. I was early 20’s.

When further doubts were raised…[Read more]

Do any of you have good turn around when something does go really south and you can’t use your chair?  Mine died at Thanksgiving and the substitute I was given was a childs. I am 245 lbs so that wasn’t good. I was told that repair would be done in 4 – 6 weeks.

I got it back for Christmas. By that time my back ached and my knees would no longer…[Read more]

Interestingly enough, this week I have had my wheelchair die twice. Once with a yet undiagnosed joystick error that resolved itself by turning the chair off and then back on, and the first when I tripped the main fuse from overworking the drive motors (they were both hot).

In the case of the blown fuse, i was alone outside away from help except…[Read more]

On my scooter I used to cover them with black duct tape. Now with my power wheelchair I cover the positioning controls and the joystick with a small dark bag. They still shine through a bit, but it is much less offensive and still not permanent.

Jennifer, I am 59 year old who was diagnosed with Kugelberg-Weilander disease when I was 15. Didn’t have the internet and didn’t really know it was a MD until I was in my thirties.

I walked until about two years ago, but progression/lost has been very rapid since that time.

This is a good group of people and a good community to be part of.

Dennis

Did your sermon get recorded?

I co-pastor a small house church and sometimes need to preach, but never feel good about it. My wife does most of the teaching and preaching.

Good on you for getting up and going for it.

I drove without any modifications for many years, but when I could no longer feel that I could reliably stop when I need to, well that was that.

I haven’t driven for two years now.

Modifying a vehicle to enable my motorized wheelchair to get me in and then making it hand operable is far beyond my budget.

Blue tooth mice are easily obtainable and wwill work with iPhone, iPad,  or any tablet. You would still need to find out what works for you.

This topic is just ripping me apart. We all want the best for our children, but deciding which treatment/therapy is the best is difficult.

I am a 59 year old man with SMA3 and was able to walk/drive until a year ago.

When I was diagnosed, there were no therapies and little hope for a normal life (whatever that is). Yoday I have a wife, three…[Read more]

Thank you for the heads up! I have requested this package, it looks great.

PT not pet

Many different times. Basically my body failed when I pushed too far or tried to do what I was able a few weeks earlier. No treatment for most things because if I was put into a splint or walking cast, I was immobile and I wasn’t willing to do that until I had no other choice.

Funny story  with lofstrands, a young new pet decided these would be…[Read more]

Broke all four bones on the top of my foot, two bones on the back of my left hand, shattered my ankle (twice,some one), broke two ribs, and cracked my head open. Only let them treat the ankle and the head. Stitches for the head, plates and screws for the ankle. The six weeks of recovery  for the ankle helped me lose mobility and pretty much…[Read more]

“Fully accessible” according to transit authority. Reality is that it is an older system in need of much upgrading.

Currently only the busses are fully accessible. Trains and subways are mostly accessible if you live in the city. Outside of the city stations are far less accessible.

For a number of years I took public transit to work in the…[Read more]