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Thought you guys might get a kick out of these pictures.After almost 5 months of seeing doctors and physical therapists and writing applications and letters for them and then battling with my insurance company, my durable medical equipment provider and physicians, and then just waiting and waiting, I took delivery today of a brand new Permobil F5 VS power wheel chair. This thing is simply amazing. It has seat tilt and recline, articulating leg elevator, seat elevator and a standing feature. If you get creative with the controls, you can put yourself in some pretty cool and gravity defying positions. It also has a top speed of 7.5 mph, which is kind of crazy fast for a wheelchair. (about 12 kph?)
Here's a picture of me by the Intercostal Waterway in Ormond Beach, just north of Daytona Beach, using the standing feature. In that position you can only go 1.5 miles per hour, but for good reason. I'd hate to hit a bump going much faster.
And here I am hamming it up in a "zero gravity" position. Despite my silly face, it was very comfortable. In the background is my trusty old Permobil c300 which I got used 5 years ago. It's a great chair too, but its like a BMW 2002 whereas the new F5 VS is like a BMW M5. The old c300 lacks the leg elevator, seat elevator and standing feature of the new F5, and, unlike the F5, the c300 doesn't have independent suspension with four user adjustable shock absorbers! :-)
On Thursday we finally return to Boston. It'll be a crazy long drive with my wife, my mom and two little dogs, plus luggage and stuff, all in my little Honda Element conversion truck, but I'm really ready to return to New England!
___
"If you are the owner of a new stereophonic system, this record will play with even more brilliant true-to-life fidelity. In short, you can purchase this record with no fear of its becoming obsolete in the future."
Edits: 06/21/16Follow Ups:
which seems to be agreeing with you!
You look healthy and happy.
Looking at that first pic, surprised you'd want to return to Boston.
Very cool, freedom generating device you've acquired there.
Where's the stereo on it though?
"Once this was all Black Plasma and Imagination" -Michael McClure
Your new device looks very versatile. Glad your perseverance paid off.
Nice gear! I just have a manual chair. It is a fight for sure as I'm finding out. I disputed a bunch of out of network claims and won. Glad you're back here posting. I saw your reply on the Cleveland thread.ET
Edits: 06/22/16
...and nice to see you back here.
Be well.
Dean.
reelsmith's axiom: Its going to be used equipment when I sell it, so it may as well be used equipment when I buy it.
:~)!
Warmest
Tim Bailey
Skeptical Measurer & Audio Scrounger
Applies to all of us. Thanks for posting up. Glad the gizmo is available for you. Watch your speed.
Looks like you are having fun in the new 'wheels' -
Congratulation on wresting that baby from the system-
A system that can double the effect of a handicap beyond recognition...
Happy Listening
...excellent.
Thanks for sharing.
You look very happy.
Josh, interesting device. Seems like you'd need to get used to the back-&-forth yawl motion. I didn't realize that you needed such equipment. If you don't mind me asking, what condition requires you to have these?
Thanks and good luck with the powered chair.
Hey FenderLover,
I'm fine with discussing what I have.
It's a very rare form of adult-onset muscular dystrophy that is biologically referred to as "dysferlin deficiency" or "dysferlnopathy" because it is caused by the absence or deficiency of the protein by that name. The encoding gene is referred to as DYSF, and in order to get the disease you need a mutation in both copies of that gene. So, it is autosomal recessive meaning you can be a carrier without having the disease because a single normal copy of the DYSF gene will produce enough of the dysferlin protein to maintain muscle cell integrity and repair. Disease linked mutations are so rare that there is no history of this in my family, though of course my parents are both carriers. My brother is a carrier too, but healthy as an Ox. There are only a few hundred genetically confirmed patients in the U.S., though we know there are many who have remained undiagnosed or misdiagnosed. A lot of patients I know, for examples, were misdiagnosed for years with polymyositis and put on prednisone, which further kicked their ass. I was lucky in that regard.
Oddly, the disease presents in one of two ways initially. One phenotype is called Miyoshi Myopathy, which starts distally in the lower legs. The other is called Limb Girdle Type 2B and presents proximally, in the limb girdle, initially. I was diagnosed with Miyoshi Myopathy when I was 22 and before the DYSF gene was discovered. (Until the DYSF gene was discovered in the late 1990s, the assumption was that this disease was actually two forms of unrelated MD.)
For me, it has progressed very linearly, and slowly, since my diagnosis. Others progress even slower, or quite a bit faster.
The silver lining is that, unlike other MDs, such as Duchenne, Miyoshi/LGMD2B does not result in cardiomyopathy, so one can expect a normal life span with it so long as he otherwise takes care of himself.
So, in a large nutshell, that's what I got! TMI? ;-)
___
"If you are the owner of a new stereophonic system, this record will play with even more brilliant true-to-life fidelity. In short, you can purchase this record with no fear of its becoming obsolete in the future."
Thanks, for the explanation. I never heard of DYSF. Amazing you take such a positive approach to this disease.
8^)
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