*Home – 5/18/19

**Scooterjon’s site is being constructed by Scooterjon. He really doesn’t know what the heck he’s doing so please bear with him. lol   However, all my posts are located to the right.  Thanks for reading!

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 which is Multiple Sclerosis (MS) 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 is the worst kind of MS a person can get.  Secondary Progressive is next in line.  I’ve always said that people with PPMS become “truly disabled” within one or two years after their diagnosis.  Secondary Progressive is basically the same as PPMS but it takes longer to become “truly disabled”.  I consider a truly disabled person as someone who needs a scooter, wheelchair and needs help from a relative or caregiver. I was diagnosed at 33 years old but didn’t become truly disabled until I was 53.  I wish someone could have told me at 33 that I had 20 years left before I’d get truly disabled.  

I’m 61 years old now and can be considered a paraplegic thanks to my MS.  I’m not paralyzed but 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 watching your body fall apart right before your eyes!  

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, I knew I would have a caregiver in the fall 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. 

My scooter also came in handy 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 I finally lost my ability to stand and walk in 2011 I was used to riding a scooter and people knew I rode one.

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.  However not knowing when I’m going to have a BM has turned me into a for lack of a better word, A NUT!!    

Let me clarify something… 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.  The other problem I have is constipation.  I’ve mainly spent the past two years 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 caregiver 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.  The ramp lowers to the ground 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!

After re-reading 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 at least 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.  That 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 my pants once in a while, I can handle that!  I’m still smiling and laughing!