MS 150k Reflections
When I think about my MS 150k experiences (I have participated in 4 tours now), I would have to say that 1998 was most memorable for several reasons…
1. It was HOT but I didn’t get sunburned.
2. It was the first year that I didn’t have to walk any of the hills (which meant I met my physical goal.)
3. I reached my financial goal in that I raised over $5,000 (thank you Alta Software, Inc. for matching).
4. It was the first year I rode knowing I had MS.
Number 4 may surprise a lot of you, especially most of my fellow Team Andersen teammates who I rode with this year. On April 10, 1997, I woke up and my leg was asleep. I wasn’t concerned at first, but that soon changed as the numb feeling continued for 3 weeks. I was referred to a neurologist. I remember asking him during my first visit if I’d be allowed to ride in the 1997 MS150k. Little did I know that I’d be sitting in his office two months later being informed that I had MS.
In my previous rides, I knew very little about the disease. I had read the information in the brochure. The picture I had in my mind of a person with MS was of Darryl, the man most of us gave a high-five to as we started and finished our rides. What I didn’t realize was how the disease attacked different people in different ways. For most people, the disease comes and goes in the form of an attack. I’ve had one official attacks and it was mild. Multiple sclerosis (non-technically) translates to multiple scars. The scarring occurs in the brain and/or spinal cord. The reason why the disease effects people differently is that the scars appear in different places, over different periods of time, and depending on the severity of the disease, are repaired at different speeds. Between attacks, I feel fine which was evidenced during the ride since I would conquer the hills quicker than my friends. Unfortunately, the disease is progressive and chances are that my body won’t be able to fully repair the scars as it has thus far. If this happens, there is a high probability that my mobility will be permanently affected.
As strange as this may sound, however, I feel lucky for many reasons that this was the disease I was diagnosed with. For all the tests I went through (spinal taps are NOT fun) and all of the possible diseases I could have had, I am lucky it was MS. First, MS has been getting a lot more attention recently (and more research funds) thanks to the many benefits the National MS Society holds – MS Read-a-thon, MS Walkathon, MS 150k, MS Sports Night, etc. Second, there have been some major break-throughs in recent years that have produced 3 new drugs that have been shown to reduce the number of attacks and therefore assist in prolonging the onset of the permanent disabilities a person with MS may have as the disease progresses. I am currently taking one of those drugs. (My awesome husband gives me a shot once a week now.) Last, I feel lucky that there are people like YOU that are willing to go out there and ride 50 – 100 miles, sore butts and all. Thank you for participating in the ride. Hope to see you out there next year and I challenge you to raise more funds and get more friends to join in all of the fun.
Monday, November 26, 2007
Lucky (Wo)Man
Back in 2002, Michael J Fox wrote a book entitled Lucky Man about his dealing with his diagnosis of Parkinson’s Disease (PD). And aside from the different name of the disease, everything else felt like he was talking about MS.
It is a great read and I recommend it for anyone with MS, newly diagnosed or living with it for years. In it he talks a lot about his childhood, his career, Family Ties and all of these stories are interesting and humorous. But he talks a lot about the diagnosis and it feels like he is talking about what I went through and probably a lot of other people as well. (This book was recommended to me by another person with MS.)
Michael J Fox talks about not believing he had PD. When I first was diagnosed with MS, I often wished I had never gone to see the neurologist. Thanks to my insurance at the time, I needed a referral. And by the time I got an appointment, my attack was over – I felt fine. I almost canceled the appointment. My husband said I should still go since we didn’t know why the tingling had happened. But if I hadn’t gone, I might have gone 5 years before having another attack, and being diagnosed. All of those years I could have not known. And a lot of times, I wished I had not known. Looking back, I realize that it was better to know than not, but I often wondered.
Then Mr. Fox talks about whether he caused this disease. How many times did I think that? Now, I hear that there is research out there that may link Epstein Barr (Mono) to MS as a potential cause factor. And by running myself down, I had gotten Mono in high school. Did I cause the MS because I got mono. I am a type-A personality and I am still running myself down. Of all my flare ups (aside from the pregnancy attacks which I blame hormones), I think I have caused each one. And I know I am doing it but I keep saying, if I can just hold out a little longer, it’ll be fine. So I know I am to blame for the flare ups, but did I cause the disease in the first place?
That kinda brings me to the next thing Mr. Fox talks about which is finding clusters. I am always comparing my disease to others I know. MS is such an individual disease that it is hard to find similarities which is part of the problem with finding the cause. But when I find the similarities I want to tell everyone. But for every similarity I find, there are 20 differences which negate the similarity.
Lastly Mr. Fox talks about telling (or not telling for so long). I went through that a lot in the first few years. In the first year, I told very few people. I didn’t want anyone to treat me differently just like him. He said that he didn’t feel like he was deceiving anyone, it was his problem and his personal business. About a year or so after being diagnosed, I wrote an article after the MS Bike Ride and that opened up the telling part. I still didn’t tell a lot, but now if it comes up, I’ll say something. It’s not as if I put a sign around my neck, but if someone asks me if I know someone with MS (because I am doing the Walk-MS, or Bike-MS or Challenge-MS -the new logos), I’ll say that I have MS. It gives me a chance to educate the person if the person is not familiar with MS. I think that’s what Michael J Fox did once he came public with the Parkinson’s. I actually wrote about telling a little on my share post at http://www.healthcentral.com/multiple-sclerosis/c/6191/15571/to/ .(I am writing on this site as well.)
So am I a lucky (wo)man like Michael J Fox. I’d like to think so. There are so many things that I feel I am lucky to have. I am going to post an article I wrote for the MS Bike Ride and I talk about being lucky in it – just remember it was written in 1998 and a lot has changed for the better which means I am even luckier.
It is a great read and I recommend it for anyone with MS, newly diagnosed or living with it for years. In it he talks a lot about his childhood, his career, Family Ties and all of these stories are interesting and humorous. But he talks a lot about the diagnosis and it feels like he is talking about what I went through and probably a lot of other people as well. (This book was recommended to me by another person with MS.)
Michael J Fox talks about not believing he had PD. When I first was diagnosed with MS, I often wished I had never gone to see the neurologist. Thanks to my insurance at the time, I needed a referral. And by the time I got an appointment, my attack was over – I felt fine. I almost canceled the appointment. My husband said I should still go since we didn’t know why the tingling had happened. But if I hadn’t gone, I might have gone 5 years before having another attack, and being diagnosed. All of those years I could have not known. And a lot of times, I wished I had not known. Looking back, I realize that it was better to know than not, but I often wondered.
Then Mr. Fox talks about whether he caused this disease. How many times did I think that? Now, I hear that there is research out there that may link Epstein Barr (Mono) to MS as a potential cause factor. And by running myself down, I had gotten Mono in high school. Did I cause the MS because I got mono. I am a type-A personality and I am still running myself down. Of all my flare ups (aside from the pregnancy attacks which I blame hormones), I think I have caused each one. And I know I am doing it but I keep saying, if I can just hold out a little longer, it’ll be fine. So I know I am to blame for the flare ups, but did I cause the disease in the first place?
That kinda brings me to the next thing Mr. Fox talks about which is finding clusters. I am always comparing my disease to others I know. MS is such an individual disease that it is hard to find similarities which is part of the problem with finding the cause. But when I find the similarities I want to tell everyone. But for every similarity I find, there are 20 differences which negate the similarity.
Lastly Mr. Fox talks about telling (or not telling for so long). I went through that a lot in the first few years. In the first year, I told very few people. I didn’t want anyone to treat me differently just like him. He said that he didn’t feel like he was deceiving anyone, it was his problem and his personal business. About a year or so after being diagnosed, I wrote an article after the MS Bike Ride and that opened up the telling part. I still didn’t tell a lot, but now if it comes up, I’ll say something. It’s not as if I put a sign around my neck, but if someone asks me if I know someone with MS (because I am doing the Walk-MS, or Bike-MS or Challenge-MS -the new logos), I’ll say that I have MS. It gives me a chance to educate the person if the person is not familiar with MS. I think that’s what Michael J Fox did once he came public with the Parkinson’s. I actually wrote about telling a little on my share post at http://www.healthcentral.com/multiple-sclerosis/c/6191/15571/to/ .(I am writing on this site as well.)
So am I a lucky (wo)man like Michael J Fox. I’d like to think so. There are so many things that I feel I am lucky to have. I am going to post an article I wrote for the MS Bike Ride and I talk about being lucky in it – just remember it was written in 1998 and a lot has changed for the better which means I am even luckier.
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