Sign up below if you would like to receive my articles e-mailed to you.
My name is Jon Wegner aka Scooterjon. I currently live in North Dakota, USA after being a lifelong Minnesotan. It’s hard to believe I’ve lived in North Dakota for the past 15 years, with the last 10 years in West Fargo! Geez, how time flies! I write articles about my lovely disease for the internet, e-zines and my website at scooterjon58.com.
I was initially diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) in 1991 at the age of 33. My MS has steadily worsened every year since that ’91 diagnosis. In 2004 my neurologist said I should consider myself to have Secondary Progressive Multiple Sclerosis (SPMS).
Primary Progressive MS (PPMS) is the worst kind of MS a person can have with Secondary Progressive next in line. The only difference between PPMS and SPMS is the amount of time before real disability begins. For me it was 20 years.
I’m 61 years old now and can be considered a paraplegic thanks to my MS. Nothing below my waste works correctly anymore. My standing and walking stopped completely in November of 2011 at the ripe old age of 53. I’d laugh but it’s not so funny anymore. After a life of playing sports and being a coordinated athlete sometimes it’s hard when I think of things I want to get accomplished but probably won’t get them done.
I had one of my worst exacerbations (worsening of symptoms) in 2011 I was still single and living alone. I ended up having to teach myself how to do everything all over again. Things like cooking, cleaning, laundry, showering, etc. while sitting on my butt atop my three wheeled electric scooter. Luckily, my future wife was coming from Peru in October of 2011 so I knew help was coming.
I had purchased my first three wheeled electric scooter in 1995 when I was 37 years old. At the time I was still walking fine but I had MS fatigue problems already starting. I would use the scooter when I knew I’d have to be on my feet for a long time like at family reunions. I’d also use my scooter when I knew I’d be walking alot like at the Minnesota State Fair or shopping at a shopping mall. I’m glad now that I bought my scooter when I did. When finally I lost my ability to stand and walk in 2011 I really needed the scooter.
I always thought the loss of my legs was the worst thing that MS could do to me. However, in July 2016 I started losing control of my bowels. Losing bowel control has really messed my head up. I’ve had anxiety problems since the 1990’s but not knowing when I’m going to have a BM has turned me into a part-time recluse.
Let me clarify something… my MS affects the sphincter muscle in my rear end. I know when I’m going to have a BM but I have to be on a toilet in 45-60 seconds including transfers otherwise I’m having an accident. I’ve had my share of accidents. I’ve mainly spent the past year inside my apartment which I know isn’t good for me, either.
Multiple Sclerosis like I have is such a time consuming disease. I figure everything now takes me 3-5 times longer than it does a healthy person. Since I can’t stand anymore I only wear t-shirts, undies, shorts and in the winter, sweatpants. I can put my clothes on by myself but it takes alot longer. My wife usually helps me put on my clothes. What would take me 20 minutes to do she can do in 5 minutes.
Luckily, I can still drive my van with the help of hand controls and a ramp inside my mini-van that lowers down when I open the passenger door. I just ride my scooter up the ramp and I’m inside the van. The front passenger seat swivels so I can transfer to the passenger seat and then to the driver’s seat. It works great and I love it!!
The funny thing about Multiple Sclerosis is this. The disease slows people down and things that used to be so easy are more challenging. The funny part is that MS doesn’t kill anyone which is good, it just makes life more difficult for people.
Sometimes it’s hard to admit to myself that I’m now considered a disabled person but I am. My blog is about my MS, the symptoms and personal stories. After 28 years with the disease I have alot of information and stories to tell. As an adult though, it’s still hard watching your own body falling apart right before your eyes!