About Me

  • Gender Male
  • Age 47
  • Relationship Married

My Story 0 Appreciate this

I'm not positive I know the best way to start this, or finish it either, I guess. I was diagnosed when I was 30, some 12 years ago. The left side of my face started to twitch, very rhythmic, like the muscles were listening to music that only they could hear. Because I thought it was just stress, I didn't due much about it for about 2 months. I finally went to my physician. While in the exam room, he got real close to my face and just watched the rhythm. Then he said he'd be right back and left the room. He came back about 20minutes later, looked at me, said, and I quote, "This is neurological, it is way above me." Before I left, he had made me an appointment with a neurologist, and scheduled an MRI. Now I have played Hockey most of my life, as a kid, through High School, and into college. It is the thing I loved to do more then anything. In college, since I was friends with some of the guys who ran the local rink, they would let me on the Ice late at night to skate while they cleaned. I would skate for hours, I didn't need nets, I didn't need other people, I needed myself and 2 pucks. There were numerous nights that I skated so long, that I would leave the rink, go to food service in the dorms for breakfast, than go to class. As an adult, my love of playing hockey didn't change, so I guess it would make sense that between my Dr. appointment and the scheduled MRI, and before my first neurologist appointment, I would lose a lot of the movement in my left leg while I was playing an In-line hockey game. Strangest thing, right while I was skating down the rink, boom just like that, it stopped fully reacting. A few days later, I had my MRI. Which by the way, I'm not normally claustrophobic, but your first MRI can change that. Even now after the 12 or so I've had, I get nervous, thank god for counting backwards from 2000, and Hail Mary's. By the time I went to the Neuro, he already had the results of the MRI. Now, my Dad was diagnosed with MS in around 1984, so before I got to the Dr. I was 95% positive it was MS. So while my wife and I sat there, listening to him tell us they may want to do a couple more tests before they can confirm anything, I was very clear that I wanted him to tell us what he thought it was. I am sure that he has had to tell many people they have MS, and I am also sure it is not something he enjoys. He has seen many people's reaction to the news, and I guess that the majority of them don't take it very well. My wife and I are not the majority of people. Once he told us, the first thing I said was, "Ok, is there a medication I need to take or something?" he said that wasn't the reaction he had expected. My response to that was, I thought pretty simple, "There's no cure, right?", he said no. " then tell me what to do, because I need to get back to work." I wasn't mean, I wasn't in denial, I knew what it was, I expected it, and I really did need to get back to work. All of that being said, the Dr. was momentarily speechless. A month later I was promoted, and my wife, our 2 yr old daughter and I, moved back to Iowa, closer to her family. That was 12 yrs ago. We now have 2 children, have been in our house for 11 years, have some good friends from our church, and our kids school, and lead an uneventful, boring, comfortable life. And up until about 4 months ago, most of those people didn't know I had MS. Some did, but most didn't, as a matter of fact most people we new, didn't know. There is no reason they didn't, or I didn't tell them, it just doesn't come up, and I don't make a point of bringing it up. Not because I don't want to talk about it, I have no problem talking about it, but because I don't make a point of talking about it. Most times when someone finds out, it comes up in normal conversation, then they go, "wait, what did you say?". MS is a part of my life, in my mind it is no different then wearing glasses. I wear contacts, never glasses, but when I do wear them and someone sees them on me for the first time, they say "I didn't know you wear glasses." Everyone knows about glasses, everyone knows why you wear them and how they help. People don't know about MS, they don't know what it does to the body, they don't know why it does it, how it does it, how you get it, or how you treat it, it's foreign to them. So because of that, they don't know how to react. I think the people I am friends with are torn, they feel bad that they didn't know, they feel that I must not like to talk about it, that it bothers me. They want to know about it, about how it effects me, but there not sure they should ask. They don't want to make me feel worse, by asking me to talk about it. They don't want to seem insensitive by not asking about it. They are uncomfortable. And that's probably my fault. The truth is, I'm happy to talk about it, I have no problem's with it. I try to assure them of that, but I still think some of them just think I'm, "putting up a tough front". Not true, you wanna talk about it, no problem, come over, bring a couple of bottles of wine, maybe some cigars, will sit out back and I'll tell you everything I know. Then we'll talk about how bad the Cubs are, how screwed up our government is, why paper is better then plastic at the grocery store, you know, only the really important things. To me, that's what MS is, part of the conversation, not the focus. Will I end up in a wheelchair? I don't know. I use a cane anytime I'm outside of the house now. Will I get to walk my daughter down the aisle when she gets married? I hope so, for her sake, but I don't know. That's the thing, the future is filled with uncertainty, I can't predict it, I can't see it, I can only hope to accept it. And it's that acceptance that let's me enjoy my life. I have no regrets in my life, how could I? I ask my self, "Am I truly happy with where I am in my life?" That answer is, "Yes". I have wonderful, loving wife of 18yrs, better then I deserve. I have 2 wonderful children. I have a sister whom I love dearly, I have a brother whom I also love dearly. I gained 5 more brothers and 2 sisters when I got married, and I consider them as much my brothers and sisters as my own, and I love them just as much. I am surrounded by family who love me, despite my opinions. Every decision I've made in my life, big or small, has brought me to this moment, how could I have any regrets? MS is part of my life, and it's a part of all of their lives, because it's a part of my life. I have been truly blessed in my life.

My MS

Type of MS Primary-Progressive MS (PPMS)
First experienced symptoms2002
First Diagnosed 2002
Symptoms Walking (Gait), Balance, & Coordination Problems, Spasticity
Treatments Tysabri, Vitamin D

Interests

Living Well with MS Healthy living
Getting Involved Walk MS, Do It Yourself Fundraising
Research Research news
Hobbies and other interestsBaseball, College Football, Fishing, Family

My Activity