I was actually in the hospital in 1995 for something completely different when one of the doctors discovered I had double vision, off to my right hand side. In truth, I'd never noticed it before.
They ran a battery of tests on me (as MS is a "clinical" diagnosis, it requires "multiple" issues). They couldn't back up the vision issue, so I went undiagnosed.
So I was living my life under the "cloud" of maybe/maybe not MS for five years, until 2000 when I saw my neurologist. At that point, we went over a variety of potential other "symptoms" and as she started asking questions, it seemed over and over that my answer was "yes".
Subsequently, they re-ran that battery of tests (MRS, lumbar puncture, visual fields, etc.) and it was clear that it was MS.
Now, I enjoy the time I have. I can rest when I need to rest.
What lifestyle changes have you needed to make?
For the first two years my lifestyle didn't change at all. I still worked 40+ hours every week at a career that I truly loved. I still "burned the candles at both ends," so to speak.
But in 2002, everything changed. It was clear that the rigors of my work were wearing me down, and because of chronic fatigue hitting me every afternoon, hard, it was clear that there was no way I could continue to work, at least in that particular industry.
I went on long term disability, which was set-up initially as a three-year term, but the intention was that at the end of the term I would start working again, in a completely different field, doing a completely different job.
When I was off, my insurance company actually paid for me to retrained as a "life coach," because the hours would be much less, and I could choose when I wanted to work. It seemed like the perfect next stage in my life at the time.
But right at the end of the three-year term I had a major exacerbation, and coming out the other side, my cognitive skills were dramatically changed. My short-term memory, which had been already "somewhat" diminished, had been reduced to the point where I didn't remember what I did the day before, or even earlier in that day. Trying to keep track of clients while being the coach I needed to be seemed to just go right out the window, which was quite a blow.
That was 13 years ago. For quite a lengthy period of time, I had a very hard time coming to terms with not ever working again. I was still a young man, 39 when I initially went on LTD, so being "retired" was a difficult transition.
Now, I enjoy the time I have. I can rest when I need to rest — which is unbelievably important for anyone with this thing. When I'm not resting, I'm exercising, I'm writing, and ultimately, I'm simply living.
I've remained on LTD ever since, and while those first few years were difficult to wrap my head around, I've reached a point of handling my life well now.
Who has been there for you? How?
I've been lucky to have some amazing people in my life. I have two wonderful sisters, and although we are separated geographically (one lives in Vienna) we remain close through the internet.
I also have an amazing group of guys I have been friends with since high school. We get together relatively frequently, and it's always as if time has stood still. They're always available if I need help in any way, too.
Plus, as I mentioned in my first article for NewLifeOutlook about why it’s important to have friends with MS, I have my wonderful friend Cassie in NYC who's been there for me since the beginning of this journey.
I'd also be remiss if I didn't mention my now ex-wife Sheryl, who lives in PA. She and I were together through some of the worst times and she was always an incredible support for me. Unfortunately, things ultimately just didn't work out, but we remain friends nonetheless.
What's your advice to someone else living with multiple sclerosis?
MS is definitively not a death sentence, and life beyond MS is so important. Sure, it's normal to have moments of anger, depression, and/or sadness (it would be seriously abnormal for you to not experience these things), but make them just that — moments. Don't dwell on them. Take a little time, feel hurt, but then get up, wipe away your tears, and get on with living.
The worst worst (WORST!!) thing you can do is stress about your situation, as stress is one of the biggest triggers to exacerbations!
Ultimately, even with this terrible condition, life does go on, and accept the fact that there are billions of people on this planet that would gladly change places with you in a heartbeat.
Surround yourself with great people. If you don't have them, there are support groups everywhere with people dealing with the same hand that you got dealt, and you'll see very quickly that you can still live a rewarding existence. MS will always be a part of you, but MS will NEVER be all of you!
Life beyond MS is so important.
I'm a 52 year-old man, living alone in Toronto. Over the past 25 years I've lived in Orangeville (a small town about an hour north of TO), as well as London, England, and Lubbock, Texas. Toronto really is my home though, and I always seem to gravitate back here again and again.
I enjoy photography — it's been a hobby, a passion, and also I spend 20 years in the photography industry as a career. So I guess saying I "enjoy" it is a little bit of an understatement.
When I said I lived alone, that's not absolutely true. I actually share my home with two beautiful sister felines. I must admit, I'm definitely more of a dog guy, but circumstances make it occasionally difficult to walk a dog every day, and I've heard dogs do need to go out frequently!
MS has been in my life since the mid 90s, but I honestly believe I'm staying ahead of it. A huge part of that is attitude, and I maintain a positive outlook, even in the worst of times.
I also do write a blog, which I don't contribute to nearly as often as I should. In my blog, I write about dealing with my MS, but more on a day-by-day basis and always with a sense of humour.