The Long and Winding Road to Mobility

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by Lelainia Lloyd |

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My quest to become a wheelchair owner and user began with pitching the idea to members of my care team. As I shared in my last column, that didn’t go as smoothly as I’d hoped. But being persistent paid off when one of my doctors stepped up and agreed to get the paperwork rolling. The process began with a referral to the community occupational therapist (OT).

Once the community OT received my referral, she made an appointment to come to my home in mid-July in 2019 (before the pandemic) to do an assessment. The appointment was a couple hours long, and she asked several questions about my daily routine, the conditions I live with, and how they affect me. She had a look around my condo to see how things were set up and to look for potential issues she might be able to improve upon.

During her second visit, she brought a mobility aid vendor with her. I was worried it would be like dealing with a used car salesman, but he couldn’t have been nicer. He answered all my questions and there was zero pressure. He brought two wheelchairs for me to test drive. I took them out for a spin around my neighborhood with the OT walking alongside for safety.

The first chair was terrible. I live in British Columbia, which has hills and mountains, so there are a lot of uphills and downhills anywhere you go, and that chair was a gutless wonder on hills. I could walk faster. I knew that chair would frustrate me because it was far too slow.

The second chair was built solid like a jeep. It roared uphill and was able to traverse dirt, grass, and gravel surfaces easily. This was important to me, as my husband and I like to hike and visit parks a lot, so having off-road capabilities was a must. This chair also had five speeds. There are bears in my neighborhood, and I felt confident that if I encountered one, I’d be able to make a quick getaway if needed.

At the end of my test drive, I’d decided on the second chair. It was everything I wanted, and my OT said it had the capability of adjusting to my future needs. There was a tilt kit and a lift kit that could be added if required.

For my third appointment, the OT brought the vendor again. This time, he had a number of cushioning systems for me to try. He brought the chair I had chosen during the test drive and set up different combinations of cushions until we found one that was comfortable. Some of the cushions had a gel layer in them, but all of these were too soft and really hurt my back.

I ended up choosing the firmest foam cushion he had. When you’re sitting for hours in a chair and bumping over all the kinds of pavement and terrain you encounter while out and about, the cushioning you choose is everything. It’s the difference between comfort and agony.

The final decisions I had to make were chair color and which add-ons I wanted. I had about a dozen colors to choose from, and I went with a gorgeous orange and added a cane holder and a drink holder.

The vendor wrote up an estimate and obtained two more from two other companies. I needed these for my extended insurance, which would be covering $5,000 of the $12,600 cost, and for the funding grants I would be applying for to cover the remaining balance.

I spent two months gathering information and filling out forms. My first application was outright rejected, which was incredibly demoralizing. Fortunately, my OT had knowledge of other funding sources, so I did another round of applications. I got extremely lucky when the second source decided to fund the entire remaining balance. With the funding secured, I was able to move ahead with ordering my chair.

A month later, my beautiful chair arrived. The vendor came to my home to custom fit it for me. The height of the foot plates and arm rests was adjusted. The joystick was installed for a left-hand drive and dampened down so I could maneuver safely with my numb hands. I finally had wheels!

Like most people, when it comes to wheelchairs, I was clueless. I had no idea just how involved and long the process was (11 months!), and I am grateful for the OT and vendor who shepherded me through it. Having the guidance of professionals helped ensure my chair was the best possible fit for my needs, both now and in the future.


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


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