Scooterjon's Intro: This is Jon aka... - My MSAA Community

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Scooterjon's Intro

scooterjon58
scooterjon58

This is Jon aka Scooterjon from North Dakota, USA. My blog at scooterjon58.com is about my disease which is Multiple Sclerosis (MS). I was diagnosed in 1991 at 33 but since January of 2000 my MS has gotten progressively worse. Then in November of 2011 my MS turned into a real life changing disability!

My neurologist now considers me to have Primary Progressive MS (PPMS). More MS lesions were found on my spinal cord in October/November 2011. Those lesions are now disrupting all of my body functions below my waist including standing, walking, bowels, bladder and balance.

I always thought the loss of my legs was the worst thing my 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 but losing control of my bowels has made my anxiety even worse! Not knowing when I’m going to have a bowel movement has also turned me into a part-time recluse. I spent the winter of 2018 inside my apartment which I know isn’t good for me, either.

I can still drive my van with hand controls otherwise I ride my scooters 100% of the time hence my nickname. Turned 60 in March and hope I have 20 more years to go. Read more at scooterjon58.com

7 Replies
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Welcome, scooterjon. You are not alone. i have learned not to say, "what else?" It seems that is sometimes taken as a challenge. All kidding aside, I agree. It's no fun. Wishing you the best on this incredibly unpredictable journey.

greaterexp
greaterexpCommunityAmbassador

Welcome to a bunch of very caring and supportive people. I'm glad you've found us!

Welcome John, sorry we have to meet like this but, this is one awesum supportive, warrior against this M.onS.ter disease family. Blessings to U!💜🙏❤😍💙---Jazzyinco

Welcome Jon! I've got good friends in Hazen and Pick City North Dakota. Blessings Cynthia

Welcome!

Hi John sorry 😐 we had to meet this way. I had to diagnose my self in 2004 I had to say to my doctor I either have Lyme disease or MS how do I find out and they said don’t jump to any concussions yeah well I have MS and don’t have that doctor any more.

Sorry to hear of your situation.

ssdw1958

Hi Scooterjohn I'm going over to check out your blog now

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