JAM, I have slow progression, so I started the process of getting my first wheelchair about 10 years ago. My insurance at that time was United Healthcare, which was willing to fund a better wheelchair than I think Medicare would currently fund.
Many things have changed in the insurance market over the last 10 years, so what I experienced 10 years ago may very well not be the case today.
For that first wheelchair, my neurologist wrote a prescription for the wheelchair. I then met with an Assistive Technology Professional (ATP) at Numotion, the DME (Durable Medical Equipment provider) that was recommended to me.
The ATP was wonderful. She had been a physical therapist and had vast knowledge of both wheelchairs and funding mechanisms. I worked with her for 5 years until she left. Virtually the entire staff at my local Numotion branch has turned over since then and they are not nearly as good as they used to be.
I then had to see a separate physical therapist and be evaluated for wheelchair fit and function. I worked with a great physical therapist.
Based on all that, we selected a Permobil C500s VS. That was the then top of the line, high speed, standing wheelchair that Permobil offered. That has been replaced in their lineup with the F5 VS. My C500s VS had power legs, power recline, power tilt, and power seat elevate. We ordered 12 inch lateral thigh supports and swing away lateral thoracic supports. My United Healthcare insurance policy covered everything except the seat elevate feature. Of course, I had to pay my remaining deductible.
I tried to have Medicare fund a Permobil F5 VS in 2019. They would fund the F5 because I had a medical need for a standing wheelchair (the VS in the model designation), but would not pay for the standing feature. When I was informed my out of pocket costs would likely be $18,000 to $20,000 I decided to go a different direction. I bought a used Permobil F5 for $3,500 and have since put over 3,000 miles on it.
This year I acquired a Permobil F5 (non VS) which was funded by Medicare. Medicare would only fund an F3 and I had to pay the difference in price between the F3 and the F5. That difference was about $4,000. Of course, I would have had to pay any remaining deductible as well, but that amount was $0 for me (pretty typical for someone with any significant medical issues).
I have written extensively about my experiences in acquiring wheelchairs, both through insurance and via the used market. You can use the search function to find those posts.
Here is what I go for in a wheelchair:
1. I like the Permobil product line. In that line, the model that works best for me is the F5. I am willing to pay the difference to get an F5.
2. I like/need having the standing feature, but rely on my 10 year old Permobil C500s VS for that. It is still fully functional, though parts are very scarce for it.
3. I need the 12 inch long lateral thigh supports to keep my legs in place
4. I really need lateral thoracic supports. I vastly prefer the swing away style
5. I really value having the swing away joystick mount. It lets me get closer to tables, etc.
6. I insist on having the seat elevate function. I have that on all 5 of my wheelchairs. Medicare will now pay for this
7. I really like having lights. On my most recent F5, Permobil included the lights for free.
8. I need a Roho Quadtro seat cushion. No other seat cushion has worked for me.
9. I need a Roho back cushion.
10. The stock configuration does not allow the headrest to come far enough forward so that it can properly support my head. I have fought this on every wheelchair I have used. Be sure that extra hardware is included so the headrest can be properly positioned.
11. I really prefer Permobil's aggressive tread tires. I have them on all 4 of my Permobil wheelchairs. In winter, I use Permobil's dedicated mud and snow tires. They are made from a tackier substance and have a flatter profile for a better contact patch. They work surprising well on snow and ice, but wear very quickly on dry pavement.
12. I like to have the programming modified to increase the maximum reverse speed. On wide open stretches I like to drive backwards so I can see my wife. Note my wheelchair's all go faster than she can walk!
13. There are softkeys around the perimeter of the LCD display. I leave the top left one in the default configuration (short press is lights, long press takes you to settings). I have the other 3 softkeys programmed in a latching fashion to activate seat elevate, memory position 1, and memory position 3.
14. The new Permobil wheelchairs based on the Power Platform allow 6 memory positions to be saved. The older wheelchairs only allowed 3 memory positions. I have all 6 positions configured in my latest wheelchair and really like that
15. I have bag hooks on all my wheelchairs. They are stupidly expensive (almost $100) from Permobil, but are worth it to me. I use them to hold a backpack that contains rain gear and essential tools and sundries. More recently, I use them for the pack that has my bipap machine.
16. I have to have a "seatbelt" to keep me from sliding out of the wheelchair. This is formally called a posture support device and is not adequate for true seatbelt applications.
Here are a few closing thoughts.
I thought having a wheelchair was just a confirmation that I was disabled. I resisted getting one for way too long. What I found was that wheelchairs have restored my freedom. An unexpected benefit is that they have given me something to focus my creative energy on. I became interested in them and have built a collection that suits my needs very well. They are easy to work on and parts are readily available for reasonable prices on the used market. I have a good friend that does the heavy lifting and wrench turning for me.
Early on, an experienced wheelchair user told me "if you need a wheelchair, you need at least 2". The reason is that wheelchairs are subject to failures that can put them out of commission for extended periods of time. Having a backup is really important. My first wheelchair spent almost 3 of the first 5 years in the shop. I have had my most recent F5 for about 2.5 months. Initially there were 7 things wrong with it (some pretty major) and now we are down to only 4 things that need to be fixed. I anticipate it will be another 3 to 6 months to get everything addressed.
Buying a wheelchair is like buying a car or a house (or any other major item). While you are in the process of getting the wheelchair, the DME will likely be pretty attentive. Once you sign the delivery paperwork, the DME gets paid. After that, don't expect phone calls to be returned! What that means is don't accept a wheelchair until it is 100% to your liking.
I learned to drive a wheelchair pretty quickly, but still managed to put a few holes in the drywall as I was learning. Don't spend too much time worrying about those kinds of dings. They are sure to happen!
Steve
. I’ve seen past post about ALSA?? Any other grants etc that might help us? Also, do you think he should just skip over a rollator? He seems to be heading that direction. Note: he is an anxious person so first sign of anything he tends to go extreme. (In everything in life not just ALS issues) TIA!
