I have been having more difficulty buttoning my daughters’ outfits. Are the buttons getting smaller and more difficult? Or are the girls moving too much as I am trying to button? Or, is it the MS?
Have you seen the new MS Society advertising campaign? One of the spots is located at this link: http://www.nationalmssociety.org/docs/HOM/pressroom/30Secondvideo.wmv. Every time I watch it (and I have seen it A LOT since they show the full 3 minute version at every MS Society event), the part that always gets to me is hair braiding scene. For me, that is the part that hits home. What if MS didn’t let me braid my daughters’ hairs?
The video has something that hits home for everyone, I think. I know people who get choked up when they see people in wheelchairs. I know others who hone in on the scene where someone stands on tippy-toes. The whole point of the videos is to get anyone watching to understand the differences in how MS stops a person from moving.
The most frustrating thing to me about MS is the unpredictability. It can affect me one way and someone else, it can affect them completely differently. I attended an event for young adults 5 years ago and was sitting with some people I know, all of whom have MS and have no obvious visible symptoms. A woman joined our table in a wheelchair and was accompanied by her mother. Her mother was very surprised to learn that everyone except her sitting at the table had MS. She even commented that it couldn’t be because her daughter was so affected by the disease and we all looked fine. I felt for that mom so much.
I often think about the fact that this disease isn’t fair. For some, like me, it is the attacks where I may need assistance walking but at all other times, I just live with the unknown. For others, there really is no denying the disease because they are in a wheelchair or using a cane. And it really isn’t fair that it affects one person one way and another person a different way. There have been times when I am with people who are more able-challenged and I do not disclose that I too have MS because I feel like I am rubbing it in, which I am not but it feels like that. I think, “why am I walking and this person is using a scooter?” And I feel bad, not because of the person’s challenges, but because I do not have those challenges too. Not that I wish I was in a wheel chair too, I wish they were not.
I wrote about my participation in the MS Challenge Walk last September. I got a lot of notes from relatives and friends saying that they were proud of me for participating in the walk. And I had a hard time accepting that word, proud. I didn’t think what I was doing was something to be proud of, I just did it because I can. And as long as I can keep doing these events, I am going to. So someday, the people that need to use assisted devices for walking won’t need to anymore. Just like the MS video says, they exist so that MS doesn’t stop people from moving. I walk and/or bike for those people who can’t so that one day, they can join me.
I still don’t know what to do about those buttons. Maybe I’ll sew on snaps instead.
Monday, January 14, 2008
Monday, November 26, 2007
1998 MS 150K Article
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.
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.
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