New Wheelchair, New Everything
By guest blogger Sheri Denkensohn-Trott
In the 38 years since my accident (and 38 years as a C4 quadriplegic woman), I have had multiple new wheelchairs. Still, I seem to forget the upheaval a new chair brings each time. Change is hard -- our wheelchair becomes our comfortable friend; we are accustomed to its quirks and its company. But the life expectancy of a chair is only 5 to 6 years (not to mention that by then, your insurance company will generally reimburse you for a new chair). If you’re lucky, your chair may last longer, but don’t wait until things start to break, potentially leaving you stranded through the lengthy process of finding and adjusting to a new chair. Hopefully, the following steps will set you up for success.
- Do your research and plan. Technology has probably changed since your last wheelchair. You may know exactly what you want, but if not, talk to others who have recently gotten new wheelchairs about the features that may benefit you. Check magazines for wheelchair users, and consult websites that give the specifics of each wheelchair. Then take out your calendar and start planning. Begin at a time when you have the bandwidth mentally and physically to endure potential frustration.
- Identify a provider. You may have a preferred wheelchair vendor. Check their status. There have been many marketplace changes, with smaller vendors being bought out by large companies. Check the ratings online and comments by purchasers – especially about steady communication from the provider and quality service.
- Get a wheelchair evaluation. If any vendor tells you that you can buy your wheelchair off the shelf, automatically switch vendors. The best, and in my opinion, the ONLY process to follow is one where your vendor teams with a certified physical therapist who is experienced in wheelchair evaluations and writing letters of medical necessity. This step forms the foundation for everything that follows. Body measurements, customized seating, and choosing the best arm- and leg rests are critical to comfort, appropriate posture, and avoiding pressure sores. Anything missed or incorrect at this juncture will haunt you down the road. If you forget about a need or preference, tell your vendor promptly so that it can be incorporated into the medical justification.
- Make needed adjustments to accommodate the new chair. Given the height, width, and design of your new wheelchair, you may need to change your living space -- desk, doorways, tables, the lockdown in your van, and more. Make a timeline based on the estimated arrival of the chair and schedule the necessary modifications. Some can be done immediately; others may need to wait until you have the chair. Still, get a jump on those when you can. For instance, I alerted my ergonomic specialist that I would need another evaluation for my desk as soon as my wheelchair arrived. I promptly got him the prescription.
- Arrival of the chair; the big day! It is time for the breakup. First, assume your appointment to get your chair will take most of the day, so have your calendar cleared. Also, expect frequent visits back to the provider and others during the first weeks, so schedule accordingly. The odds are that the sheer hassle of adjusting to the chair (and associated body aches) will make you want to go back to your old friend. Please resist this. There will certainly be unexpected glitches. For example, I was unfamiliar with the air valves on my new Aquila cushion and within three days, I got them caught on my bed and ripped them from the cushion. Also, I had to spend 3 full days at a dealership figuring out how to fit my new chair in my van, a process that required time-consuming and innovative modifications. My chair didn’t fit under my desk – more modifications. All these exacerbated my already-high frustration. Oh, how I wanted my old friend back! But I knew it was in my long-term interest to keep going.
- It is critical that you monitor your skin closely. You are sitting in a new chair, and your body is getting used to it. Take note of any red spots that appear and get the adjustments immediately before potentially developing a pressure sore that can sideline you indefinitely – or worse.
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Become an Advocate
Throughout this exasperating and exhausting process, always remember that you are the customer. Be an advocate for yourself to ensure you get the very best chair for your needs. It will pay off in the end. Most importantly, don’t give up. It may be a long and winding road, but you will get there. In time, you will make friends with your new chair. And remember, at any point in the process where you have questions, the Reeve Foundation is here to help.
Sheri Denkensohn-Trott sustained a spinal cord injury in 1983 and is a C4 quadriplegic. She practiced law for the Federal government for 25 years and started her own business with her husband (who also has a disability) called Happy on Wheels, LLC. Their vision is to inspire others, with and without disabilities, to live happier lives through writing, speaking, mentoring, and consulting. Sheri is a columnist for New Mobility magazine and a regular contributor to other written publications. Additionally, she is a motivational speaker, professional storyteller, and mentors’ students and individuals of all ages. She serves on The Advisory Board of the Rockefeller College and is also a breast cancer survivor and Ambassador for the American Cancer Society. Sheri is currently writing her first book. Sheri and her husband reside in Arlington, Virginia. You can follow them on all forms of social media, and subscribe to their newsletter by accessing their website www.happyonwheels.com.