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A First Timer With a Rare Disease Navigates the Wheel Chair Ordering Process
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A First Timer With a Rare Disease Navigates the Wheel Chair Ordering Process

I'm twenty-nine years old and today, I ordered my very first custom fit power chair. The process was odd because I've never been through it and I admit I was a bit terrified.

But, I'll start at the beginning and first tell you a bit about myself and my disability. As I said before I'm nearly thirty, and I have Ehlers-Danlos Type III. Ehlers-Danlos Syndrome (EDS) is a genetic condition affecting the connective tissues of the body. It causes chronic pain, joint instability, joint dislocation, easy bruising, joint hypermobility, easily torn and cut skin and so so much more.

In 2013, I was having a harder time getting around and my body was declining. I was using a walker and cane. I purchased a manual wheelchair. A Light-weight folding chair called a "Quickie 2".

I quickly discovered that propelling myself in my wheelchair was causing even more issues. I'd started dislocating my ribs, which were (surprisingly) one thing I'd never dislocated before. My shoulders started grinding bone on bone. Sometimes I'd get halfway through a store and be so exhausted I would have to get one of my children to push me. Other times, I would just grit my teeth and push through the pain. This was not exactly a good idea for someone already battling unstable joints and arthritis. I also began to lose feeling in my fingers, likely from all the damage I was doing to my upper body and joints. So I began researching and talking to fellow EDS sufferers. I discovered that a lot of them too were in power chairs after experiencing the same issues I did. So I decided to approach my Orthopedic doctor and my physical therapist. After some examination and lot of discussion, they agreed.

So my Ortho wrote up the wheelchair script. The problem? Neither he nor my PT had completed this process before, especially for someone with my rather rare of a diagnosis. I decided to call my insurance company, and they connected me with Wheelchair Professionals, a Nationwide organization in the USA that connects up smaller groups to uphold a level of services that is pretty top notch. My doctor sent the script to them.

Today, or this morning rather, I met with my PT and the Seating Specialist from NuMotion. Our local supplier. Now I was really nervous for this appointment for a few reasons. I have an invisible genetic condition that greatly impacts my way of life, that went un-diagnosed for so many years. Ten of those years, I was in constant agony.

So prior to the appointment? I read and I researched and I talked to fellow EDS sufferers. My advice to others? You can never know enough. Remember that YOU, the patient, are your own advocate! Speak up! 

When we first went into the store the seating specialist immediately said: "I don't want to do an electric wheelchair because of accessibility." I immediately thought "This shit is not going to fly." I told him very matter of factly, that my husband and I were going to buy a van with tax money and with my disability back pay, planned to buy a van lift. That seemed to change everything. He then spoke about my abilities and limitations. He asked about the door frames in our house, and began taking measurements.

I told him I'd been looking at the Quantum line because I would be outside a lot, and my chair would get a lot of grass and hill use. He agreed, and decided that a Quantum Q6 Edge would be ideal for me. We also discussed tilt. My order was for a power chair with power tilt. Which would be no problem with the Edge. However, he also tried to talk me into seat lift, which is something I don't need, and don't really want.

He was very good about answering my questions about rear versus mid-wheel chairs. They really perform about the same, but the mid-wheel turns in a much smaller area, which I definitely like. Then we talked about color. He handed me his tablet and said, "Pick any of these colors!'"  I laughed out loud and told him I really liked the pink pearl, and that's what I wanted. He told me that the pink pearl was a very popular choice among both men and women. He said it without a snotty remark about gender and color, which gave him more points in my book.

Are you wondering what measurements were necessary? Width of the seat (mine was 16") as well as length (mine was 18"). He commented that I had a long Femur, which amused me. We talked about the headrest in particular, because I have arthritis in my neck and I was concerned about that. The seating specialist then explained that after the chair was ordered, received, and assembled, it would be brought to my house by him personally, and then programmed there. He promised to walk me through using it, and adjust the headrest and so forth. I told him I wanted to take him to the school across the road to the track, and see how fast it could go. He said he'd be alright with that too.

We discussed the foot rest. I do not want a swing away foot rest, so we decided on the plate. It folds up for transferring in and out of the chair.  He went on to explain all of the insurance junk for me. Because my disability is so rare (he researched it before coming to see me), and there is a chance I have autonomic dysfunction, these aren't things that insurance companies are use to seeing. It turns out, they go by codes. So his job, and what he has been doing for a couple of decades, is writing up and telling the insurance company exactly why I need every piece of equipment, so they will not just see that the existing codes don't match up and reject the claim.

Next, after he writes all of that up, he'll send it to my doctor and PT who will both sign off on it. Then it's off to the insurance. They whole process averages about two months. When is the power chair is actually ordered? It takes seven to ten business days. When they receive it, they'll put it together, make sure it works, and then off to me it comes.

So it's definitely a process! Thankfully, we'll have our van and lift before my chair gets here!! Hopefully in a few months, I can post some good news and photos of a new chair and new horizons for me.



*Image courtesy Flickr creative commons.

Leave a Comment

  1. Artist on Wheels
    Artist on Wheels
    I wish you the best of luck and really hope you get the chair. The pink pearl color sounds wonderful. Yes, getting wheelchairs are certainly a process. I have a manual, as well as an electric. I have post polio syndrome and have been in a chair since the year 2000. I'll be looking forward to seeing pics and future posts about the new chair.
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