Wheelchair Advice Needed

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Landis02

Member
Joined
Oct 23, 2022
Messages
27
Reason
CALS
Diagnosis
06/2021
Country
US
State
NC
City
Hillsborough
My PALS walks only with a rollator. He gets tired quickly so he can’t walk with it for very long. We want to get back to traveling, both by car and by plane. I’ve been looking at lightweight manual wheelchairs (maybe the Karman Ergo Flight). Would something like that be best or should we look at a portable power chair (like the Air Hawk)? He won’t be using the chair for long periods, mainly to move around a museum or park. We’ll be paying for this ourselves since we need to save our Medicare dollars for a nice powered wheelchair in the future. Any advice would be appreciated.
 
If you are willing to push him and he's willing to be pushed, I would just get a folding lightweight manual chair. Portable power chairs generally become obsolete quickly due to the lack of positioning (tilt, recline, power foot rest, seat elevation) and "portable" often underestimates the hassle factor of their assembly and transport.
 
I also need advice not for a portable chair but for my actual PWC. I have my assessment on Monday and while I don't need one as of yet clinic advised me to start the process now as it can take a while to get. I've already been in contact with the Gleason Foundation to add the seat elevation feature. Seeking advice on what features that I should make sure in the order. Has anyone added the standing feature and was it worth it?
 
I just bumped up a thread on PWC.

Steve really is our expert on them. He helped me when I got my PWC and also helped on batteries, second chairs, etc.

From my understanding, the standing function is only available on some models and Medicare might not pay for those models. This might have changed. Also, Medicare probably won't pay even a portion of the standing function. It would be great to have, Lisa. I think it costs around $20,000 out of pocket. I might be wrong.
 
I wish I had bought my foldable electric chair sooner. It weighs 34 pounds and can be folded quickly and put in the back of any car. It isn't good for grass or rough trails but it does excellent on pavement and all indoor accessible places. I've been using it for a few weeks, every day. The controls are very easy. I will say I'm glad I bought this model because even 5 pounds makes a difference when loading it. That can be important for a CALS.

My foldable PWC is called Matrix. It retails for around $2,800 and they throw in a second battery (which is very expensive) and some add ons. It converts to manual mode with a simple lever. I haven't used it on manual mode (with someone pushing me) but it's easy to move around in the condo.

Picture of it folded up and unfolded. It takes about 15 seconds to fold it and two seconds to unfold it.
 

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I have a one-month loaner Majestic, weighs 30 pounds, folds up well. I can go on my uneven "lawn" (if you can call it that) and I love it. I guess I'll have to buy one because I can still walk one short block and back, so I guess I'm not ready for a power chair.
 
It's great you got to try the one you want to buy. Going on your beautiful lawn is important.

One think to keep in mind is that it takes several months to get a PWC. I lucked out back in 2017 when I was trying to recover from a fall that sprained my right ankle. My neuro gave me an order for a PWC. That was before supply shortages and it still took three months to get the chair. I'm glad the process is over.
 
My OT and PT suggested I try trekking poles before a walker or wheelchair. With my leg weakness, they also help me get up out of the chair.

I love my "sticks" and I can use them to push me forward; and to stop me from falling forward when I go downhill.

My supplier was all ready to order the power chair but I found that Medicare is on the cusp of approving the lifts and I told them to hold off until the "Expected NCA Completion Date" of May 16. See here
 
I liked using my old hiking poles when that worked.

I believe one can get the lift part funded by Team Gleason.
 
My PALS used trekking poles for over a year and recently progressed to the rollator. He only uses the poles now to assist on stair climbs.
 
Just a note that Kim's progression has been fortunately very slow as you can tell from her join date. The OP's PALS' progression/abilities are what I was speaking to when commenting on the folding PWC concept.

Mupstate, the time from being able to walk a block to not being able to walk, can be very short. I wouldn't spend a ton of money on an interim wheelchair unless it's not a strain. Since you have mentioned being on Medicaid...

Re your PWC order, Lisa, as OG notes, you might not need the Gleason funding for seat elevation bc Medicare is in the process of a new policy regarding funding it. If you don't want to wait, I would still get rejected by your insurance first (Gleason may require that anyway).

In addition, anterior tilt (the seat coming up at an angle) could be very helpful even if only for pressure relief, and for ADLs for anyone who still can stand with assistance or weight shift. Different PWC models have different max anterior tilt angles but any level will help.
 
Thanks. What does anterior tilt mean? I thought I should get one that can lean back in case my lungs progress a lot later on. What is pressure relief? I've been eating a lot and when I'm sitting at an exact 90 degree angle or less, my tummy gets a bit squished. Is that what you mean?
 
Anterior tilt is forward so the back part of the seat is higher than front. Pressure relief would be for backside and spine. For your abdomen issues you would want slight recline not tilt
 
Thanks for the insight on PWC's. I have already been in contact with the Gleason Foundation and have a representative to be in contact with. I see that Medicare will render its decision on whether they will be allowing coverage for seat elevation on 5/16. It looks like that they're looking at possibly covering the standing feature also. The rep from Ability Works will be coming to my home on Monday, I'll definitely be discussing my options with him and if I should wait until after 5/16 to place the order. I don't need a PWC as of yet but know it takes awhile to process and receive the chair.
 
That would be amazing if they would cover the standing function. I've had my chair over five years so, in theory, I might qualify for another one.

Progression is so unpredictable. I was walking fine one minute and now I need the chair to go anywhere outside my condo.

Today, my niece visited. She brought her bathing suit. She's a PT so we did some water exercises. The water temp. was 85 and it was sunny so it felt good. I still have good core strength but my legs have weakened rather quickly. I also injured my knee somehow but, of course, I'm not a candidate for a knee replacement or any other invasive procedure. My niece tried pushing me in the light PWC and said it was easy. I also can use it as a walker in the condo.

Lisa, my niece was thrilled with my vibration plate. She hurt her leg playing pickle ball and was using the vibration plate. She liked it enough to want to buy one. Right now, she's in Florida for four months and NY for eight months so she'll probably get one for up there. She's very active in Florida.
 
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