On June 4th, 2023, I was finally diagnosed with Myofibrillar Myopathy and Spheroid Myopathy, a Muscular Dystrophy. I was previously misdiagnosed with mitochondrial disease, as were my father and aunt. Thankfully, genetic testing with a proper doctor solved with lifelong mystery for me at 54 years old. I had been slowly losing my ability to walk for many years and now could barely go ten feet. My hands no longer had dexterity and were very weak.
This round of dysfunction started in November of 2022 with COVID. I had previous exacerbations in the past, but would somehow pull out of it. This time was different, and it wasn't getting better. The doctor told me to get a scooter or wheelchair, as trying to walk would only make my condition worse. He wasn't wrong. The more I tried to overcome this, I made it much worse. The mutated gene I have is responsible for repairing muscles as well as relaxing muscles. There are no cures or treatments.
I had inherited two of my dad's chairs, but couldn't bring myself to use them. They sat in my studio for months as I flat-out refused to use them. I then called Mike Ehmann from Consolidated Medical. I wanted to see if he could make them better, but that didn't turn out to be an option. That day, he happened to have a Magic Mobility Frontier V6 all-terrain power wheelchair in his van. I instantly fell in love. I could go anywhere in this chair! No limitations like my dad's chairs. For three months we battled my insurance company, only for them to deny it in the end. Deep depression kicked in. There was no way I could afford this chair.
In the meantime, Mike brought over another chair for me to use. An older chair that was much better than my dad's chairs, but still not the chair I wanted. The depression got worse, the days got darker, and the months of being stuck at home were adding up. I still hadn't left the house, and my wife finally suggested I seek medical help or at least join the MDA Community group that I wanted nothing to do with. I don't do shrinks or community groups, but thankfully I have a wife who doesn't give up. She pushed me to join the group, and that first meeting I went in kicking and screaming. I was just mean and told the online group that I hated being on camera, hated using the online meeting software, hated this disease, and that my biggest problem is I refuse to use the wheelchair I have. I don't want to go out in public. I don't want it to get stuck like my dad's did. Every other excuse I could think of, too. The group wasn't having any of that, though. Somehow, someway, they got through to me that I needed to do it and get my life back.
That weekend, I took the chair in my van and parked in front of Lowe's for the first time in three years. And the truth was the only place I had gone over the last few years was either the doctor's office or the local pharmacy. And even that had stopped once I started falling in the store. I almost left the parking lot, but I couldn't let down my newfound friends in the community group. I got in the chair and off I went. The first thing I realized was I no longer had to chase my wife as I had for many years. Then I realized I could go anywhere in the store, something I probably hadn't done in ten years! As we went to check out, I decided I wasn't done and off I went down another aisle. As I came back, my wife asked if I had "seen the dog," which I hadn't. She insisted I go back down the aisle. There in front of me was a Frenchie in a wheelchair. My eyes immediately teared up. I met him and his owner, who told me he had been in his chair for five years now and loves it. My wife and I are definitely dog people. We currently have two Mastifrenchies – half mastiff, half Frenchie. Needless to say, I realized how foolish I had been and went back to my group to report my adventures and to thank them for honestly saving my life.
When I say things were dark, I'm not kidding. For the next month or two, I started exploring the world again but quickly realized all the limitations the chair had. The Magic Mobility Frontier V6 didn't leave my thoughts. I needed to be able to jump curbs where I live and navigate uneven sidewalks. My hometown is awful when it comes to accessibility. I needed to be able chase my four grandchildren in the yard along with our dogs. This older chair with its worn suspension was killing me. It felt like getting punched in the kidney every time I hit a bump. And I kept getting stuck in the yard. The depression started to kick back in. I knew I had concerts planned for the summer as well as other events, and I just couldn't see myself in this chair. My rep knew this and somehow, someway was able to get me a deal on a used V6. I sold guitars, a car, and anything else I could think of to make this happen. Mike claims the day he delivered it was the first time he'd seen me smile. That's actually funny because one of my symptoms is I can't actually smile because of muscular dystrophy! But somehow that day I did smile.
That day changed my life. That chair became an extension of me and became my legs. I was no longer afraid; I was free! I could go anywhere, and I surely did! Off to my first concert in so many years! The local farm that I hadn't been able to take the grandkids for so long! The county fair where I finally saw my friends, got to see frisbee dogs perform again, and even got to cuddle a baby kangaroo in my V6! The Sawyers car show is one of the biggest in the northeast that I hadn't been able to attend for a long time. The chair performed flawlessly and quickly became an extension of me. It has absolutely changed my life, and I take it everywhere!
I will forever be grateful to Mike Ehmann, Consolidated Medical, and everyone else who made this deal happen for me. I know I was being a big brat who wanted his way. That being said, you can't put me in the Hummer of wheelchairs and then expect me to drive the Prius. Once I tasted that freedom and feeling of safety in the V6, there was no turning back. I have since been asked to be an ambassador for the Muscular Dystrophy Association, which I accepted immediately. The MDA community group changed my life. It saved my life. They got me in that first chair which got me to my V6. I will not spend my time advocating for the MDA, their community groups, and better accessibility on a local level and for air travel. I am most excited to be able to write for the MDA Ambassadors Product Guide. Needless to say, the Magic Mobility Frontier V6 all-terrain will be the first on my list.
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