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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 15 years, with the last 10 years in West Fargo! Geez, how
time flies! I write posts and a blog at scooterjon58.com. My blog is about
my disease which is Multiple Sclerosis (MS).
I was 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 now consider myself
to have Secondary Progressive Multiple Sclerosis(SPMS). Secondary Progressive
is the second worse kind of MS you can get. The worst is Primary Progressive
Multiple Sclerosis (PPMS). The only difference between SPMS and PPMS is
the time before real disability starts.
In the fall of 2011 my MS took another turn for the worse and into a real life
changing disability. After an MRI in October of 2011 my neurologist found
more MS lesions had developed on my spinal cord. Those lesions disrupt
body functions below my waist including standing, walking, bowels, bladder
and balance. My standing and walking stopped at the ripe old age of 53. I’d
laugh but it’s not too funny anymore!
Luckily, I can still drive my van with the help of hand controls and a ramp inside
my mini-van. I also had to teach myself how to do everyday things again like
cooking, cleaning, laundry, showering, etc. while sitting on my butt atop my
three wheeled scooter. MS like mine is such a time consuming disease. Every-
thing now takes 3-4 times longer than normal!
I’ve ridden 3-wheeled scooters since 1996. In ’96 I’d ride my scooter if I knew
I was going somewhere and I’d have to walk alot. Nowadays, I ride my scooters
100% of the time hence my nickname. I always thought the loss of my legs was
the worst thing MS could do to a person but I was wrong! I explain what I
think is worse in the next paragraph.
This is embarrassing to say but I’m an open book and there is nothing I can do
about it anymore. In July 2016 I started losing control of my bowels. Losing bowel
control has really messed my head up. My MS affects the part of my rear end
that says, “hold on, you’re almost to the toilet!” Sometimes, I don’t make it in time
and accidents happen. When I have an accident I feel just like a little baby.
I’ve had anxiety problems since the early 1990’s but losing control of my bowels
has made my anxiety worse! Not knowing when I’m going to have a BM has also
turned me into a part-time recluse. I spent the winters of 2018 and most of 2019
inside my apartment which I know isn’t good for me, either. Of course, being retired
I don’t really have anywhere to go anyway.
I turn 61 in March of 2019. I hope I have 20 or so years left. After being a coordinated
athlete my entire life sometimes it’s hard to admit that I’m now considered disabled.
My blog is about my MS, the symptoms and personal stories. And believe me, I have
alot of personal stories to tell. That being said, it’s still hard watching your body
falling apart right before your eyes!
After rereading my Home page I decided it was too negative! I added this at the end
of February 2019. As pissed off and angry as I am about my MS I’m not going to die
from it. Some of my classmates from high school have already passed away! At my
age (61), stuff starts happening to everyone’s bodies.
There are three things my MS will never take away from me. They would be my
personality, my sense of humor and my laughter. Although I’d rather not have MS
it sure beats ALS, strokes, diabetes, terminal cancer or taking a dirt nap. Who cares
if I can’t walk anymore and I crap in my pants once in a while, I can handle that! I’m
still smiling and laughing!