Navigating the Wheelchair Maze

March 1, 2024

(Ataxia, Disability, Ageism, Neurodegenerative Diseases, Mobility Devices)

A year ago this month I began the process of securing a wheelchair for myself through my provincial government’s disability programs. I had very little idea as to what it was that I needed but I did realize that obtaining a mobility aid through these channels would take more time than imagined and that I should get it before my critically needing it. This last point, in my opinion, is worth quickly riffing on.

I believe that the history of the majority of neurological diseases provides us with good insights into predicting what is coming along. Ataxia targets our ability to be safely mobile, thus admitting that one is going to need a rollator or wheelchair sooner rather than later. This allows for several positive things to occur. First, it handles the wait time to get the device. It took me five months to receive the wheelchair I have, and that was remarked by those in the know as fast. By getting the mobility aid early on you have the opportunity to learn how to effectively use it. You can ask your PT about body positioning and learn how to pivot, brake, manage obstacles, and enter or exit buildings and you can practice these things while you have the energy to do so. I figured that I likely wouldn’t have the energy or the patience if I was in dire straights needing the wheelchair. I would just be frustrated and angry.

Tip one is to admit your future needs and get on with rehearsing, practicing, and building strength so as to avoid frustration and anger later on.

How do you know what you will need in a mobility aid? This was a challenging question to answer but I wanted to have a good idea before I met with the OT who would be doing the ordering. I began by looking at my lifestyle and my passion for movement. I may be 70 but I am a very active 70. An electric scooter or chair was not going to fit my personality or activity level. Those devices did not provide the flexibility I wanted and needed. My independence is a key component that influences my thinking.

I considered a walker or rollator, but I had to be honest with myself and recognize that my legs have been getting very fatigued from all of the shaking and wobbling, thus those devices might not be the best for me. Additionally, I was concerned about the position that these devices place the body in. Usually, they have either fixed or flip-up seats which can cause one to lean forward and into the device. This could put static stress on my lower back and shoulders. Static stress is a result of not moving joints through ranges of motion yet causing them to be in a flexed or tense state. Dynamic stress is the stress that a

range of motion produces, such as in doing an exercise or walking.

While I wasn’t ever anticipating needing a wheelchair, I concluded that it might be the most pragmatic choice. I am still ambulatory so I can use the chair as needed, which is growing more often. This may not be the case a year from now. I may need it constantly, but I will have had time to adapt, learn, and accept.

Tip number two is to seriously evaluate your lifestyle, current physical health, and future plans for being mobile. Use that to help decide which mobility device will suit you a year from now.

Having decided on a wheelchair, I was then confronted with what kind, shape, and features. While my OT was excellent in helping to facilitate getting the wheelchair, it was up to me to know what I wanted. I may have a few university degrees, but I knew very little about wheelchairs. However, I was able to make a naively informed shopping list. I wanted it to be light enough to wrangle into the car. I wanted the back to be as low as possible so that I could reach around both sides without hitting the canes. Then came all the questions from the technician and the OT: solid or pneumatic tires; spokes or mags; grips on wheels; cushion types; brake handle configurations; size of casters; and of course, colour. I admit I was both overwhelmed and still wheelchair illiterate. It was July and I had not thought about winter and tires. I learned that “light” in the minds of the government program’s eyes is pretty darn heavy (striped down my current chair weighs in at an awkward 36.5 pounds).

The third tip is kick some tires before settling on something and try not to let a dealer tell you what you want and need.

Get a demo for a few days and live as normally as you would like to be while using it. If it is too heavy, you won’t use it. If the leg rests stick 12 inches out front, you may have to rearrange your furniture. Take it to the grocery store and boogie around getting stuff. In the end, you should start to get a sense that it is just a part of you. If it doesn’t start to feel like that then maybe try a different model. (Learning how to navigate places is a whole different topic.)

Do you know there are 26 wheelchair manufacturers in the US (and maybe 3 in Canada)? The projection is that by 2028, it will be a 1.7 billion (Yup, with a B) dollar per year industry. When I curiously asked online as to why any product associated with the disabled seems to be highly inflated in price I was told that it was because so few companies exist and it is a niche market likely causing low profits. Doing the math, if every one of these companies sold an equal amount of product in 2028, they would each have a revenue of about $65 million. I guess one could describe that as a slim margin to do business within. Off-shore manufactured wheelchairs start at about $300, but custom chairs made in the US or the UK can go for over $20 thousand. Price is another factor in your decision process regarding your chair. Maybe you have insurance that will cover the costs. But for many people, getting the right chair for their needs might be simply out of reach. Keep in mind that often, once you decide on a chair it is usually for 3-5 years because government programs and insurance are not keen about returns.

Forth tip is that if money becomes an issue, check with local service clubs or churches for community grants. It likely won’t cover the full cost of the right chair, but a little from here and there can really help. You should not be a victim to inordinate prices. It’s OK to ask for some help.

There are 3.3 million wheelchair users right now with 1.8 million over 65. With more than half of the users being “seniors,” it becomes very easy for the industry to inadvertently express ageism (as well as ablism). Government and insurance programs often assume that one-size-fits-all when dealing with us old people.

This is likely the stereotype program administration operates from: The patient is over 65 with multiple medical conditions that are centered around cardiovascular issues. The patient has a spouse or caregiver meaning they have someone who is going to help push them around. The patient is likely sedentary for the most part. The patient does not need to learn wheelchair safety moves such as fall recovery, wheelies, or hill navigation. The weight of the chair is of little consequence since they likely have a caregiver, thus materials used in the chairs that are provided are cheap and heavy. Therefore, the Aztec 400 model, weighing 40 pounds and costing about $600 to actually manufacture but sold for $2300 should do the trick for everyone. And of course, it does fit the ticket for a whole lot of people and maybe you are one of them.

Maybe you are more like me. Over 65 with a neurological movement disorder not unlike a 21-year-old Ataxian. Like the 21-year-old, a single person and solo traveler, who is very active and fit. Knowing that the wheelchair is responsive to safety maneuvers would be an asset. Plus the ultra-lightweight, slimmed-down design would help maintain a healthy lifestyle and outlook that encourages travel and other normalizing activities. This person likely fits the kind of chair a younger person would be fitted with. The younger person is conceived as being active, and socially outgoing, and the injuries or disease shouldn’t get in the way of that lifestyle. The young person is directed toward the Nimbus 3000 - lightweight, nimble, carbon fibre, rigid sleek frame. But that option is not presented to the active over 65 individual, because of the assumptions of ageism.

Tip number five is, don’t allow the subversive and unconscious notions of agism to taint your selection of the right mobility device, particularly the right set of wheels. Ataxia may be progressive but just because you are older doesn’t automatically place into “late-stage”.

If you have and plan to maintain an active lifestyle, independence, and social connection, then advocate for yourself as if you are 25 years old with years of adventure yet to experience.

In summary, my experience has taught me that it is essential that you have a serious heart-to-heart talk with yourself about what kind of person you want to be rolling forward (see what I did there?). Your mobility device choice will reflect that person. The purpose of a mobility device is to take the “dis” out of disability and allow you to be the new able person you are becoming.

Here is a link to a WebMD page that can help with the decision-making.

And check out the humourous and informative Gem Hubbard, a UK vlogger creating some terrific content surrounding being disabled.