Effectively Coping with Disabilities and Raising Awareness

Rudy Sims

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Related Topics: Disability Nexus

Disability Nexus: Article

Loss and finding the right wheelchair

an article written by Dave Breezy (A.K.A. Chairdozer)

Nov. 24, 2006 My father passed away the day after Thanksgiving at the age of 69. An incredibly difficult time. He passed away that morning of a heart attack. They say it hit him so quick, that he was basically dead when he hit the floor. Although we didn’t often show it, we were quite close. This one hurts! At least we got to have one more holiday with him.

Also earlier this year (2007) we lost one of me & Mary’s closest friends and former caregivers. She is sorely missed.

As of Feb. 1 of 2007 I have left my former homecare providers and have a private individual doing my homecare. A good friend and a skilled caregiver. I still need to find someone to cover her days off, but it’s damn hard to find people that are as good as her.

Also, The love of my life, my wife Mary had a heart attack March 3rd, 2007. They wound up putting in a steint to solve a narrowed artery in her heart. She was in the hospital for 10 days in all. She’s going to therapy three days a week. Doesn’t seem to have done any perm ant damage. Thank god she’s ok! She’s what makes life bearable. She is my whole world. I love her so much, I don’t know what I’d do without her.

Now on to the wheelchair story. My wheelchair has a horribly rough ride, which triggers many spasms and causes me much pain. When they hit, my spasms cause my body to extend and go rigid from chin to toes, to the point that I can’t even breathe. It feels like the life is being crushed out of me. Not pleasant in the least. I spasm so hard that I’ve busted 4 sets of belts (I use both chest and lap belts) in the last 2 years alone. The first 2 sets were the "positioning" belts that are standard on many chairs. Then we upgraded to automotive seat belts that are both thicker and stronger. I’ve since busted 2 sets of those. It takes considerably more to break them, so they do last longer, but they still break. So, I started looking into what could be done to make my chair cause me less spasms.

The more I looked into it, the less impressed I was at what I was finding out about my chair. Upon doing some research online, I found out that this one has a seating system that’s not even designed for a person of my weight. It’s designed for a max of 250 lbs. When I received it I was at 325 lbs. and I am at 360 lbs. now. In Aug. of 2006 I started to hear the motors getting noisy and loosing power, my leg lifts had both broke (within the first month that I owned the chair) and I am told that the company that built them won’t stand behind their warrantee. My tilt & recline both jerk, & pop, when they work at all, It was at this time that I started looking into finding a new wheelchair for myself. I told the therapists and my DME (Durable Medical Equipment) provider all of this and explained that I thought that my chair was developing major problems, and that it would be cheaper to get a new one than fix the old one. They agreed. So, the search began…

I started by researching the different chairs online. The first chair I drove was an Omegatrac. I loved it! Smooth ride, almost no spasms, built like a tank, both power base and seating system built to take 450lbs., and an excellent warrantee. What’s not to like? We (me, my DME, and the doctors and therapists) did all the paperwork and contacted my insurance. They said that by the time we could get it sent in for them to look over, they had thirty days to look it over, then they would notify us of their decision by mail. Then we would have to get the wheelchair ordered, have it built and shipped out, have the seating system installed, and then when it was delivered is when they would pay for it. Since there was no way, due to everything being done by mail, that we could get it done before my insurance was set to expire, we might as well not even try.

I said that we had already thought of that. Why can’t we fax the paperwork back & forth? My therapist, Doctor, and DME all had fax machines, we even spoke to the wheelchair manufacturer, who said they take orders by fax regularly, and that it would be no problem. My insurance co. said no, that they would only accept it if we used the original documents all the way around. I said ok, not a problem, I’ll pay to next day air them, both ways. You’ll have them by morning. After a lengthy conversation back & forth.

I was finally told by my insurance co. that no matter what we did they would just "sit on it" until my policy run out. I said ok, I’ll renew my policy right now, by phone. She said no, that I was no longer eligible to renew my policy. I’ve got a lawyer looking into that, but even if we can get it resolved it could take several years . I also have Medicare due to my injuries, but they flat out refuse to cover anything that expensive, great warrantee or no. So alas, due to it’s cost, it is not meant to be.

I test drove several other cheaper chairs, none of which were suitable for me for a variety of reasons. But, just when my prospects seemed pretty bleak, a glimmer of hope.

In late March I test drove a chair made by Magic Mobility, the Frontier X5! It is rated to 400 lbs. It features an incredibly smooth ride, due to the fact that it rides on low pressure flotation tires! It is a 6 wheel so it is extremely maneuverable. In addition, because of the flotation tires, it gets around well even off the concrete. When I went over to my dme to pick it up to try it out, his first words to me were, “There’s no way you can get this one stuck!“ (I’ll refer back to this in a second!) I thought, you mean I can take the grandkids to the park & play AND not have spasms?! WOW! I’m in heaven!

More Stories By Rudy Sims

I am currently 31 years old I have a disability called cerebral palsy and I am in a wheelchair I was born with cerebral palsy and I have had three operations to try and manage it. My last operation went badly and I experienced very severe postoperative chronic pain for 10 years. I am doing great now and I want to help others with disabilities and chronic illnesses cope effectively with their conditions.