My Expertise! – 2/18

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I feel I can talk about my MS with confidence because my body has experienced just about everything that MS can dish out. The last thing to go was losing control of my bowels. That started happening in July of 2016. It’s now May 2018 and I’m still arguing with my bowels daily. My father always said become an expert at something and you’ll go places… I hate to say this but I’ve finally become an expert at something. I’m an expert at my Multiple Sclerosis but I’m not going anywhere!

My scooters names are Barney & Ginger. I now ride them 100% of the time. I use to say as long as I have my scooters who needs legs! I used to joke with people that walking was overrated anyway! Looking back now I was just talking cocky. Now that I can’t walk or even stand up sometimes I think it’d be nice to be able to walk to my refrigerator for a can of Coke!

B&G will be my legs for the next 20-30 years and it’s slowly sinking in. My walking and standing stopped back in November of 2011. My spinal cord developed or is still developing MS lesions which are blocking the functions of everything below my waist. I’m continually amazed at what the human body can do or not do to itself! It’s a weird experience losing the use of your legs. I didn’t get blown up in a war, I didn’t have a bad diving accident and I didn’t have a bad car accident. Multiple Sclerosis just happened to me!

MS is a debilitating disease of the central nervous system. It can affect every part of your body because there are nerves throughout your body. For some reason and doctors don’t know why but the body of a person with MS is literally attacking itself. If you looked at the MRI of my brain and spinal cord you’d see little white spots which are called plaque or lesions. Myelin is the protective sheath over the nerves like the rubber that covers an electrical wire. Your brain sends a signal to do something and the myelin keeps the signal going in a straight line. When scarring or plaque occurs on the myelin it interrupts the signal from the brain and sends the signal somewhere else.

Five months ago my neurologist said I could now consider myself to have Primary Progressive Multiple Sclerosis (PPMS). It took 20 years to go from Relapsing Remitting Multiple Sclerosis (RRMS) to the progressive variety. I wish I would have known I had 20 more years to walk. I would have done more work, dancing, running and bicycling. I’m sure everyone thinks like that when they get diagnosed with a potentially serious illness.

Multiple Sclerosis is a very humbling disease. When a person has to buy his first pair of adult underwear at the age of 47 you’re HUMBLED! Believe me, you are humbled. One day a friend of mine was driving into Fargo. I asked him to pick me up a bag of Depends just to see what he would say. He’s 39, laughed, and said “no can do!” I gave him some grief and then we laughed together. When my then 4-year old could run faster than me on my scooter you’re humbled. People with diseases like MS just have to adjust their lives accordingly.

When I finally went in to see a neurologist in 1991 I was unsure what the heck was wrong with me. I had eyesight problems, numbness and tingling all over my body, I was having trouble urinating, I wasn’t sleeping too well, I had a slight limp and a myriad of other small problems happening to my body. What confused me was that none of the symptoms seemed related.

What could be wrong with me I asked? It had taken me a year to get in to see an eye doctor and it would be another 3-6 months before I finally had the diagnosis I was looking for. Believe it or not by the end I was actually relieved that I had MS! I didn’t know what course it would take but at least I had a name for all my symptoms. I also knew that I didn’t have a stroke, cancer, ALS, or any other major problem. I had been on a roller coaster ride for over a year wondering what was wrong but now I knew!

Scooterjon