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
