Questions Asked By Others


I'm on a site for people with MS called 
MyMSteam.com.  You can ask any 
questions about the disease that you have. 
The other day a man asked me how my MS 
was doing and what were some of 
my symptoms right before I started losing my 
walking.  I'm an open book and I don't mind 
answering questions about my crappy 
disease (MS).  I got diagnosed in 1991.  My 
walking etc. stopped in 2011.  I had 20 years 
in between diagnosis and what I would call 
disabled.  In hindsight I wish someone could 
have told me that I had 20 years left to walk 
in 1991 but that's impossible to know.  

Everyone with MS is different though, it depends where your lesions are in your brain and spinal cord.  I have some lesions on my brain and my spinal cord.  I've personally seen my MRI's.  The lesions on my spinal cord are now affecting everything below my waist.

I stopped urinating regularly in January of 2000. That's when I started using catheters.  Just so people know self- cathing doesn't hurt at all.  I've cathed roughly 37,700 times give or take a couple hundred.  If a person uses KY jelly on the catheter it slides right up your urethra to your bladder. When the catheter reaches your bladder you start urinating.  I use a product called Surgilube instead of KY jelly.  I found the KY jelly containers too difficult to hold and to empty all the contents.  Surgilube is in a toothpaste shaped container and you can squeeze all the jelly out.  It comes in 4 ounce containers like KY jelly. Ask your pharmacist about Surgilube. They should be able to get it.

After my diagnosis I started out walking just fine.  In fact, I owned a carpet cleaning business back in 1991.  It was a physical job.  My walking was fine until my back would start hurting after standing and working some.  At first I used a cane, then walkers and finally got a scooter to help with my fatigue and eventually my walking.  In 2009 I started walking more rugged. Rugged to me means limping and gimping along leaning on chairs, tables, etc.  Because doing that was tiring, in 2009 I started using my scooter more and more.  I felt it was easier and less fatiguing on my body to use my scooter. Finally, in November of 2011 I started using my scooter full time.   

I started having "real" bowel troubles in the spring of 2016.  I'll write more about this in another mailing but it's a pain in the ass!  No pun intended.

Scooterjon

Current Condition



I've always liked to have fun and I've been 

told I have a great personality. I'm very 

honest and trustworthy, at least I think so. 

I would give the shirt off my back to 

someone that needed it. The month of July 

2018 will mark my 27^th year of living with 

MS. I'm still out there grunting out a living 

but now I'm trying to earn money as a writer 

on the internet. I write articles about my MS 

and everything that's happened and is 

happening to my body.

My MS has gotten worse in the past 6 years. 

In October of 2011 more MS lesions were 

found on my spinal cord. The lesions are

disrupting all my bodily functions below my 

waist including walking, standing, bowels 

and bladder. I can no longer jump up off my 

couch to get something out of my refrigerator 

to eat or look out  a window to see who just 

honked a horn. I park my scooter next to my 

bed at night or when I lay down on my couch. 

It's the first thing I see every morning. I'm 60 

now and sometimes it's hard to admit that 

I'm considered a disabled person but I am. 

At times I get down but I try not to stay that 

way very long. I have alot of things I want to 

do with the last 20-30 years of my life. If 

you can get over the fact that you're going to 

be doing those things sitting down helps you 

accept your disease. In May of 2015 I 

described to my neurologist how I was feeling 

and what I did and did not do on a daily basis.  

Without batting an eye she said I was 

depressed! I knew I was down at times but I 

never considered depression to be the 

problem. So I started taking a pill called 

Bupropion once per day for my depression. I 

have to admit it has mellowed me out 

some and I'm not yelling so much now.

One of the reasons I didn't notice a change in 

my mental health was the fact that my wife 

Doris had just gotten here from 

Peru. It's ironic that I stopped walking 

completely a month after Doris got to North 

Dakota. I'm glad she got here when she 

did because she helps me do the things I 

cannot longer do. I was also excited and 

happy thinking of all the things we would be 

doing!

As I said I'm 59 now and I can trace my 

symptoms back to at least 1980. I've had this 

disease in my body for half of my life. I

remember when I was a little boy growing up 

in Rochester, Minnesota.  A commercial on 

TV (this was the 60's) showed  people in 

wheelchairs with the tag line, "MS, the 

crippler of young adults".  I don't think that 

tag line would work well these 

days in  our politically correct world but back 

then it was OK. I myself was diagnosed at the 

age of 33 and I can honestly say it has made 

my life more challenging. I think it's ironic 

that I now have the disease they were talking 

about in that PSA and I still remember that 

commercial from 50 years ago.

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 are

HUMBLED! Believe me your ARE humbled. 

My friend Eric was going into Fargo one day 

and 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 thanks, I can't do 

that! I gave him some grief and then laughed

with him. When your 4-year old can run 

faster than you 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 problems happening to my 

body. 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!

In the past 6 years my MS has taken my legs 

from me hence the title of this article. I can't 

walk anymore and my balance is shot. My

bladder hasn't worked since January of 2000 

and I also have severe fatigue which can 

come on at anytime and anywhere leaving me

totally exhausted and needing a nap. I'm 

calling 2016 the year that I lost control of my 

bowels.  I don't know anymore when I'm 

going to have a bowel movement.  See my 

article titled "My Biggest The Greatest Handicap" for 

more details.

Scooterjon

MS REQUIRES PEOPLE TO STAY IN SHAPE

Stay in Shape

I used to manage health clubs from '82 to '87. In the fall of 1984 I needed to lose some weight and get in shape.  If I was going to run my club I felt I should look the part.  I was 210 lbs then which for me was too heavy.  I started playing racquetball 5-6 times per week and used the exercise bike daily. I would bike for about an hour per day.  

I became obsessed with being in shape!  It took me 5 months of this hard work but by May of 1984 I had lost 30 pounds and weighted a trim 180.  From 1984 to 2000 I stayed in some sort of physical shape.  My problem is that I loved beer and pizza.  I was always gaining and losing the same 20-30 pounds.  Darn yo-yo diets! However, when my MS worsened in 2004 my life really began slowing down.  I was about 220 lbs when my walking stopped in November of 2011.  My wife from Peru came here in October of 2011 I knew I was in trouble!  I guess they eat alot in Peru!  lol

Here's what I do for exercise these days.  

- My physical therapist stops by once per week.  We do a variety of stretching exercises. My wife and I know all the exercises to do and the PT watches me go through the paces.  I do stretching exercises, bridges, pushups, crunches 

- I stand with the help of my standing machine.  I try to do this five times per week. Standing helps with stretching out my legs, it helps with digestion, and it's kinda fun standing up again.

- For my cardio I bought a punching bag.  I can punch sitting on my scooter. Watching videos on You Tube I can simply punch the bag or I like treating it like a speed bag. Punch for 30 minutes and you're sweating, huffing and puffing, burning calories and feeling good.

Scooterjon