September, 2020
Because us pALS have fewer and fewer motor neurons, we have to get specialized equipment to compensate for our degenerating electrical system. After the cane and walker were outliving their usefullness as permanent mobility aids, it was time to trade up. Enter the electric wheelchair, or, as I like to call it, the LazyBoy on Wheels.
The good folks at Stanford Neuromuscular really went the extra mile on this one. Showed up one day and hobbled in with my walker for the fitting. After sitting me in a demo chair all manner of measurements were taken. The occupational therapist even made sure I got a rolo seat, which I came to understand was an air mattress for my butt. Seeing that everyone’s work there was done, I left armed with contact information for the loaner closet of the Muscular Dystrophy Association which provided me a prior years model at no charge.
Next stop insurance purgatory. Three months or so later (I had been warned) the authorization letter arrived with a typo denying coverage for two important and expensive functions which are typically covered. Because you’ve been good I won’t subject you with the details. It did, however, take an hour on the phone with insurance by me, an hour and half by the occupational therapist, and God knows how long by my neurologist directly with the insurance doctor, who couldn’t write a letter to be consistent with the attached benefit statement, to get the typo corrected. This only took an additional month.
Finally the big day arrives and I’m off to pick up my new state of the art Permobil Corpus 3 with bright blue panels and optional vertical lift. The Corpus comes with foot and back adjustment and double articulating tilt. Joystick controlled steering and speed with two power curves, this bad boy tops out at a bit north of 5 years mph. Which was about the speed I was doing slaloming around the concrete pylons surrounding the building, with the occupational therapist in her silver go go boots in hot pursuit. The beast performed admirably even on wet pavement. I was sold, They even took the loaner as a trade-in.
Lots of adventures on this beast before I became too paralyzed to operate it myself. The vertical lift did prove useful negotiating high tables at the local wine bar and seeing the stage over the crowds at SummerFest until my dear friend decided to lean on the joystick. The speed and handling created many memories over city streets, bumpy creek trails, and even three horizontal feet of early Tahoe snow. St. Laurel’s favorite is the time she, unbeknownst to me, calmed traffic while I screamed downhill through a road construction project en route to a local trail. She still says this is what happens when you give an electric wheelchair to a mountain biker!
Embrace The Suck 
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LOL
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Sounds like you are still a safety hazard…thanks for writing these, I appreciate hearing your voice reading them aloud in my head!
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This is amazing 🙂 Thank you for sharing! Three cheers for the LazyBoy on Wheels!
On Fri, Sep 18, 2020 at 2:21 PM Embrace The Suck wrote:
> embrace-the-suck.blog posted: ” September, 2020 Because us pALS have fewer > and fewer motor neurons, we have to get specialized equipment to compensate > for our degenerating electrical system. After the cane and walker were > outliving their usefullness as permanent mobility aids, it wa” >
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I’d love to see that. no risk of a chain ring getting buried in your leg is one upside..
Thanks for the entertaining writing style Bob.
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You are a true pioneer, Bob! Even with all those bureaucratic obstacles, you sure showed ’em what could be done, if only open minds allowed an intended benefit to accrue as designed! Loved your descriptions of those having to give chase because there was no way they could have anticipated what you’d be able to do speed-wise.
So many things are difficult to anticipate. I left my senior living center here for the first time in 6 months (with the approval of the management) today. My son had my car, unused and parked outside for the duration, washed, waxed and detailed for me. I was off and roaring, first time in all that time! I was a new woman after so long without my hair stylist’s talents! I headed home, only to discover my phone wasn’t with me. I’d left it at home by mistake (first time ever)! Having had to install a new battery, there were systems changes in my ten-year old Prius. So, there were many new commands for previously simple functions. I knew how to get where I was going, but not how to get home! As I was tooling down the highway, I figured out how to call up my GPS system, when, alas, the GPS wouldn’t accept my new address! Only East Coast addresses worked! There’s another pack for West Coast addresses! The only way I could get home to Willow Glen was to drive to downtown San Jose and come home the only way I knew. Lengthy, but it worked! Toyota and the GPS system will take another day! So I know what you mean about the magic of not knowing what to anticipate! More evidence! Take care; and stay safe!
Thanks for your post! Loved it!
Kay
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Hi, Bob. You continue to entertain, educate and inspire! Don’t stop! Stan
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Dear Bob and St. Laurel,
Electric Chair vs Mountain Bike…. Bob I enjoyed your post but I must say you and St. Laurel are making the best out of a exceptionally tough time in your life.
My heart goes out to you both and sometimes we are best at our worst…..and this is the worst that I can imagine happening to our very good friends.
This time of bad air quality, a global Pandemic and not being able to visit friends and family. On top of the list is als and it hurts me to even think of the pain you must be enduring currently.
In closing I would like to say what “a guy, friend, husband and father”you are now and have been as long as we have know you. Keep your spirits up and thank you for staying in touch especially now.
Ken & Jing Kay
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Bob- I can see the imagery! Keep your spirits high!
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Bob,
You never cease to amaze me. I can just imagine you zooming around in that chair.
I love reading your posts and seeing that your wonderful sense of humor is still there.
Give my love to Laurel.
Rhonda
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Good memories! Thanks.
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Plans for a visit with you were delayed due to the bad air. But you are back on our radar! We shall call for our “date” next week.
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Hi Bob, an amusing look back to not so long ago. Thanks for being able to laugh with yourself and sharing it well. Dick
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Hi Bob, Thanks for your lively reflections on not so long ago. Wonderful that you can share how you laugh with yourself. Best wishes, Dick
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As an avid hiker, the my corpus 3 doesn’t quite do it for me. I did take it out on some “accessible ” trails at Crater Lake in Oregon. We got stuck a few times, and had to ask someone to help push me out.
Don’t they (insurance providers, wheelchair vendors) know that most pALS were athletic and active prior to diagnosis? I was told by the P.T. that insurance doesn’t care about that. They only cover it if you need it in the home. They don’t care that you are trapped inside your home without it.
I want some heavy duty off road tires on my chair. And mine goes 6.4 mph top. That is way too slow, lol. Oh, and better shocks would be nice. The sidewalks in Denver are horrible.
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