I Learned Everything I Know About Wheelchairs on YouTube

Around the age of 60, Richard Mower started noticing his body changing. He started feeling exhausted whenever he’d climb the stairs of his apartment complex. This would be the beginning of Richard’s rare journey with IBM — inclusion body myositis — an inflammatory muscle disease and the most common muscle disease in patients over the age of 50. Richard explains how, in lieu of targeted treatments, physical therapy is his treatment plan.

I'm a city boy from Cleveland. Born in 1957 and went to military school in Florida on scholarship. From 1980 to 2000, I was in Atlanta, Georgia, working every part of the bar business pretty much. In 2013, I went back to Florida and that's when I noticed I was having issues. 

I was having a hard time getting up the stairs of the building I was living in, but I just thought it was because I wasn't working out, going to the gym, things of that nature. I did go to a doctor and was misdiagnosed with something else and put on prednisone for a year or so, 60 milligrams. Also briefly put on IVIG (intravenous immunoglobulin) treatment for polymyositis.

I moved back to Georgia to be close to my sister. And that's when they found out I had my disease. In 2016, they asked if I would go to John Hopkins and I said, Sure. And I actually flew there by myself. And they mainly said, “You don't have what they thought you had. You have inclusion body myositis (IBM), which unfortunately like the other versions of myositis, don’t have a cure.” Some things help maintain some function, prednisone and whatnot. My version of IBM affects my arms, hands and fingers greatly.

At John Hopkins, my doctor told me, “I'd be surprised if you were not in a wheelchair in 10 to 15 years.” I was back in Georgia, trying to think ahead, thinking, “Okay, that gives me until about 70 or 75 years old.” Some family friends I was renting from were moving to Texas, so I moved down there with them, north of Dallas. And I kind of built a little garage apartment. 

Something happened on the drive. When I went from Georgia to Texas, and crossed Mississippi, something happened to my back. When I saw the neurologist, they said, you need to see a back specialist. Because somehow they compressed my back. And I think it made my condition worse. 

IBM is this weird thing where not everybody progresses from A to Z. Some people kind of grow with the disease in phases but some doctors think of it all as the same stage. But phase 1 is not the same as phase 3. 

A YouTuber named Jerry King has better information about wheelchairs than many professionals. 

I saw a neurologist when I first came to Texas at UT Southwestern Medical Center. At that time, I was able to walk and drive. Now, I'm pretty much full time in a power wheelchair. Ever since being disabled, I have to admit, I've been amazed trying to figure everything out. I feel like I'm the first guy in a wheelchair! Even setting up my place in Texas, there are no consumer product reports for domestic products for people with disabilities for disability at-home equipment — nothing. I can't even go to the places to look at stuff, I'm buying blind. 

While living in Georgia, I had in-home care for a therapy without any stoppage. I moved here to Texas in September, 2018. When I came here to Texas, my first health care provider, they didn't do long term physical therapy. I was dropped after six weeks and had to find another company. I went a long time without any physical therapy; it was like two steps forward, five steps backward. Every time I didn't have any therapy, I lost everything I was kind of maintaining. Since coming here in 2018, I've lost a lot of functionality. Here in Texas, my friends do what they can. If I fall down, someone can help get me up, that kind of stuff.

With these healthcare companies, they had a hard time getting paid by insurance, and I’d lose access to therapy. I might go three weeks without any therapy. Everything I would gain, I lost it. And once you lose it, you never get it. The process has been frustrating.

The good news is I did find Paige Redding and her company New Life Home Health Care. She's been a godsend. Without the therapy, I'd have nothing. I’m not on any prescriptions but I am getting some of my medical records together with AllStripess to get my physical therapy records all centralized. My physical therapy is my only drug.