Who the heck are you, anyway?

I haven't been overly inspired to write, lately.  I guess I'm sinking into a deep depression... NO - it has nothing to do with my feeling sorry for myself (at least not directly), but due to the recent elections.  I live in Wisconsin and am employed by the state (notice I didn't say "work" for the state).  We just elected a governor that has essentially promised to cut my pay and screw with insurance and retirement benefits.  Excellent - I have THAT to look forward to.  What the hell are people thinking?

I'm not going to get overly political because all it does is to get me worked up.  As the sole breadwinner in a house with a wife, two kids, a dog, a mortgage, student loans, etc, etc, I've got to stay positive and recognize that this will pass... probably when I'm living under a bridge, trying to survive on oatmeal and bugs.

Anyway, I decided I would just write about me - then I don't have to think too hard...  I had an earlier request for "my story," so here it is.

I am in a relatively unique situation in that I still see a lot of my friends from high school.  We mostly went to college, everybody moved away (except me) and got their experience before moving back.  It's a nice neighborhood/city, so it makes sense.  They are all pretty successful, thanks to their own hard work, which is probably part of the reason that I am the way I am... I refuse to be a victim in all of this - I'm going to do what I can to help myself AND try to get others to do the same.  It's an accountability thing...

I was always the physically fit one; the one that didn't gain a lot of weight after high school and the one my friends referred to as "pretty boy."  This, in some ways, is a curse.  When you establish yourself as that person, you think of yourself as invincible.  When you have problems (such as the early warning signs of MS), you are not likely to complain or see a doctor about them because that would make you weak.  Essentially, you are not likely to be your own advocate.

When I was 29, a friend called me about 2 weeks before a local half-marathon (13.1 miles) and asked if I would do it with him.  Now I was in decent shape, but had not been running...  I agreed.  I went into it wondering how far I would make it.  I went the whole way and realized that it was as much a mental battle as it was physical... do you see a connection?

Delighted with my success at doing the half, I signed up for a full marathon the next year.  I started training 4 months prior and made it the entire way, not at a blistering pace, but I made it.  This was in 2001 and in 2004 I signed up for another marathon and ran it.  I was not running consistently, but would train for them for 4-5 months and then see if I could finish.  Again - I was basically just confirming that I could still do it and was still bullet-proof.

In 2005, I entered grad school while continuing to work full-time.  In the second semester, spring of 2006, my speech became so slurred that my wife was worried I had a mild stroke.  This was not quite so obvious to anyone else because I was, of course, putting a tremendous amount of effort into enunciating and selecting my words carefully.  Ultimately, I did go to the doctor and they ran me through a barrage of tests (ECG, etc) and eventually chalked it up to the fact that I was in grad school, working full-time, sleeping 4 hours a night, and stressed.  Seemed reasonable, although it just made me less likely to go the next time since having the doctor tell me I'm imagining it was my worst fear.  I now know that this was a relapse; one of several as I look back.  This wasn't the first time I suspected something was wrong, but I figured many of you can probably relate to the situation.

As a side note, I had been experiencing debilitating fatigue, particularly at certain times of day.  Remember the buddies I was talking about earlier?  Well, we've all been on a softball team since we were teenagers.  During the games (particularly in my 30s) I would literally be falling asleep while standing in the outfield and I was having a lot of trouble tracking the ball when it was hit in my direction...

In February of 2008, I decided I would train to run another marathon.  I ran on an indoor track that was close to work, so I'd go at lunchtime.  The first time I ran, I had to stop after about 5 minutes and was staggering - grabbing railings for balance, nearly peeing my pants, not able to turn off my ipod because I had lost fine motor control.  I sat for around 10 minutes to recover and then headed back to work.  Being stubborn (and, did I mention, "invincible?"), I chalked this up to being out of shape and went back the next day.  Same drill.  I kept it up for around 2 weeks until one day I fell on my face in front of a couple of college coeds.  They ran over "OMG, are you OK?"  I, of course, was so embarrassed that I said I was fine and stumbled away as fast as I could.  After that, I didn't go back.  I still hadn't mentioned it to my wife or my doctor.  A couple of months later when I was coaching my son's tee-ball team, my wife would comment that she knew how I was feeling based on my stance.  There were no trees and it was HOT.  I would have to use a really wide stance just to stay upright.  We both knew something was wrong at this point...

Around this time I got up the courage to tell my doctor about it.    Our first thought was maybe low blood pressure or a heart problem.  I had an obnoxiously low heart rate at the time - around 45 at rest - so it seemed like this was a strong possibility.  After a slew of tests (24 hour halter monitor, ultrasound, stress test, etc) I was told I had the heart of a teenager.  I was then referred to a neurologist.  The neurologist wanted an MRI before they would even see me, and the rest is history.  That was in the summer of 2008 when I was 37, and I had entered into the relapse that would change my life.  My speech is not great, but much better and most people don't notice (I am hyper-aware of it, so it seems worse to me), I spend a lot of time making excuses to my co-workers for why I can't walk somewhere that's more than a few blocks away, my legs ache and are growing weaker (although I have found ways to manage that), and my balance has gotten much worse, although I really do think that D3 has helped significantly.

I would never claim to have it as bad as most of you but I can see the writing on the wall.  My goal in having this blog is to promote self-advocacy, educate a little on what works anecdotally and what there's evidence for, to provide resources, AND TO TALK SOME SENSE INTO THE PEOPLE WHOSE GOAL IT IS TO BRING EVERYBODY ELSE DOWN!