Because I have Osteogenesis Imperfecta, or Brittle Bone Disease, it’s extremely important that I use a wheelchair that is not only stable but supports my crooked body in all the right places so that I don’t break a bone if I hit a bump. My body is not standard. I have bends in all the wrong places, so my seating system has to be completely custom to be comfortable and effective. I have to be physically able to reach the controls and push all the buttons. It’s important that every detail of my chair is tailored to my needs both for convenience and safety.
Most people don’t realize the arduous process it is to get a new custom wheelchair. There are lots of steps to take and hoops to jump through, and nothing ever goes as planned the first time. These chairs are extremely expensive, so getting funding for them is sometimes next to impossible no matter how badly you need it. The paperwork alone is daunting, and if you don’t have a good company to go through with people who know what they are doing, it is a nightmare.
The first step in finding a wheelchair is finding a local company to work with who helps you decide on a chair model, procure the correct paperwork from your doctors (which is sometimes the hardest part), submit to the insurance company, and actually alter the chair to fit your needs when it comes in (because it is never exactly right the first time). Currently, I am with NuMotion. I am SO lucky in that I have the best wheelchair repairman in the Gulf South. Jeff has been working on my chairs since I was four, and we have followed him from company to company as he has switched over the years. He has been doing this for so long that I’m convinced that there is no one who knows more or has more experience than he does. There are very few like me in the area, and my chairs require some very special accommodations that are a bit “out of the box.” Jeff has had to get super creative on more than one occasion over the years, and he always makes sure I am taken care of quickly when something breaks. Without my chair, I am essentially immobile, which is not cool. Wheelchairs are like cars. They have to have tune-ups, get new tires, new batteries, etc., on a regular basis. Insurance companies generally agree that a wheelchair like mine should last about five years, but if you really take care of them, they can last double that. I take great care of mine, so I tend to have them a little longer than five years.
I would be remiss not to stop here and also give a shout out to Butley, the manager/supervisor at NuMotion. Butley is the one that handled all of the paperwork and information gathering for us. He set up meetings with wheelchair reps, wrote up the evaluation from my physical therapist, got all necessary prescriptions and letters from my doctors, and spent an enormous amount of time with me deciding which wheelchair model would be the best fit. It had been over five years since I had gotten one, so the technology had changed a good bit and more options were available. Butley made sure all the ducks were in a row and everything was worded correctly for insurance approval. His job is tedious and difficult, but he is a perfectionist at work and dotted every “i” and crossed every “t” for us. Ultimately, we had no major issues with insurance approval.
The next step in getting a new wheelchair is picking a model. There are several decent choices out there, but interestingly enough, the United States does not make a single one of them. Though the U.S. does make electric chairs, they are generally not top-of-the-line and are lacking the stability I need. They have been known to flip easily, which, as you can imagine, would be a complete disaster for someone that breaks bones easily. I’ve actually heard of people with O.I. flipping their chairs, and trust me, it never ends well.
As far as I know, the best company out there for making safe, electric wheelchairs is Permobil. Permobil is based in Sweden and makes chairs for both adults and children. My last two chairs have been theirs, and I have loved both of them. Their technology continues to become more and more advanced, and they are definitely the forerunner in the wheelchair industry. However picking the brand is only part A of picking a wheelchair–now you have to pick the right model, and there are a ton. I have always had chairs that have front wheel drive, or big wheels in the front and turning, smaller wheels in the back. However, there are models with back wheel drive (the exact opposite), or ones with mid wheel drive, which means that there are actually two small wheels in the back, two large wheels in the middle, and two more small wheels in the front. Mid wheel drive chairs can turn on a dime but I’ve heard that they are harder to control and they don’t always climb bumps and curbs as well. We decided that since I have always had front wheel drive and was used to it, I would just stick with that.
Okay, so now we have narrowed our options down to Permobil, front wheel drive wheelchairs. Believe it or not, there are still choices to make! At this point, it was a matter of figuring out which models could be modified to include the features I needed. I wanted a chair with an elevation system for sure (so that I can raise up higher as I am only 2’7″ tall) and one with a reclining option. My chair before this one had a custom recline option built in (thank you, Jeff) and I absolutely loved it. It helped me be able to sit in my chair for longer periods of time because I could periodically lay my seat back and give my back short breaks. With the amount of sitting I do at concerts and art shows, I knew my next chair would have to include a function like that as well.
I won’t bore you with all of the back and forth, but after probably a month or so of back and forth, Butley, Jeff and I (and my Mom of course), decided that the Permobil C500 was the right wheelchair for me. It is actually an adult wheelchair base (all of my chairs had been pediatric chairs before this one), with a completely custom seating system and control system. It not only has elevation and recline, but it also has tilt (where the entire seat, including the bottom, lays back), and the footplate is adjustable as well electronically. I absolutely LOVE these new functions and Butley and Jeff did a fabulous job.Now, to give you an idea of a timeline, we started the process in February of 2013 and I did not receive my new chair until March of 2014. Remember how I said nothing ever goes right the first time? Well, trust me, that is the truth!
After we chose a chair and got all of the options and choices hammered out, it was time to figure out funding. When I signed the invoice on this wheelchair upon receipt, the total at the bottom was $78K. Yep. Seriously. Obviously we do not have that kind of money, so we had to figure out how we could get it covered. Luckily my insurance (Medicare/Humana) covered a fairly decent chunk after a good bit of arguing, and then the state of Louisiana picked up the rest. I’m involved in Louisiana Rehab Services (LRS), which is a state/federally funded program that aims to help people with disabilities become working members of society. They fund necessities, like aides, wheelchairs, medical equipment, home accommodations, etc., that peoplewithe disabilities need in order to work. In order to get funding, however, you have to prove that you are working, which I obviously have been for several years now. They helped me out with a few accommodations in college, and we have been working with them since. Although it is A LOT of paperwork, it’s a great program and helps a lot of people become working members of society who wouldn’t necessarily have the ability otherwise. A shout out to my LRS rep, Ali, is definitely needed here. She is ON IT and gets everything I need (which is usually not a lot) approved and pushed through in record time. Again, I’m super lucky to have such a great team working with me.
Both the insurance company and LRS required a stack of paperwork, mostly from Butley, Jeff and Ali. I had to have a formal evaluation written up by my physical therapist that outlined exactly why I needed each feature on my chair that we were asking to be funded. I had to have a formal appointment with my orthopedist (who I only see maybe once every three years) to write up a prescription, and it had to be worded exactly right. He didn’t write it correctly the first time, so I had to get another appointment, go back, and have him do it all over again. He even had to write an accompanying letter. It was absolutely ridiculous and took a lot of time, but in the end it worked. I guess that’s all that really matters.
Ten months down the line the chair was okayed by insurance, LRS, and the wheelchair company. It was ordered, and we received it two months later. That was a great day! Of course it was not 100% perfect when it arrived and needed some serious seat modifications. For one thing, I remember the back of the seat being too high, and I couldn’t reach the controls at all. Jeff spent hours here that day and the next week as I found more issues as I drove it. He was extremely patient and eventually everything was perfect.
It took me several months to get used to driving this chair. Although it is the same brand as the one I used before, it drives completely differently (it’s much heavier at 400 lbs and I think that is a lot of it). It’s also about an inch wider, two inches longer, and much more powerful than my old one. It was kind of like switching from a Kia to a station wagon. Yes, I ran into walls, and even pulled my mother’s bedroom door off the hinges (which I had to pay to fix, by the way). I didn’t risk taking it out of my house for the safety of the public for about three months (I continued to use my old one in public for a little while just to be safe). After a few months, driving it became second nature just like the last one.
Another issue we had with this chair was that we had to have it and the lift in my van modified to be able to load it and take it places. It is just under the weight limit for the lift, so we were cutting it super close to not being able load it in my van. There was a moment where I wasn’t sure we were going to be able to work this out, and I was about to have a stroke. After all that and checking and double checking everything, including the loading in the van issue, for it to not work at that point would have been a disaster. It’s not like we could just return it and let someone else buy my custom wheelchair. It doesn’t work like that.
People don’t realize how much we have to go through to get these chairs, thus they don’t understand why I lose it when they are in danger of getting wet, dirty, dropped, etc. Not only are they extremely expensive, they are also not easy to fix. You can’t just go to Walmart and get spare parts. As I mentioned, these chairs are made across the pond, so sometimes ordering parts can be a hassle. On the plus side, Permobil has an outlet in Nashville, so even though my wheelchair had to be made in Sweden, we can usually get parts for it here in the United States (usually). That is another major advantage to using Permobil.
This wheelchair is not a toy. It is not a buggy or a scooter. It is a very specialized piece of equipment that is made just for me that is virtually irreplaceable. It is my main source of mobility and gives me an independence that nothing else can. When I’m driving it, it’s like an extension of myself. This is why we take such good care of them. I try my best to keep up with what they need, don’t over stress them, and try really hard not to put them in any situation where they can get damaged. Jeff is always amazed at how well my chairs do and how long they last. I actually managed to make a set of batteries that should only last two years last eight. Like I said, I take good care of my wheelchairs!
I just wanted to wrap this blog up with a very big “thank you” to my wheelchair guys, Jeff and Butley. Jeff has become practically family over the years, and I know I can depend on him to come running any time I call him having a panic attack because something is broken. Butley has always gone above and beyond to get me what I need, and I appreciate it all so much! Y’all understand how essential my wheelchair is in my life, and you always make sure I’m completely covered. Thank you again!