Wednesday, September 25, 2013

THIS IS MY 1ST COLUMN: MS...What a Strange and Random Disease

Tony Bodmer, Columnist,
My name is Tony Bodmer and I am 34 years old.  This is my 1st Column!
I'm looking forward to writing more here and hopefully educating some people about MS.  I know I didn't know anything about it til the day I was diagnosed and there's too many people out there who are just not educated on what MS is. I was diagnosed with ms 9 years ago when I was 25.  The first 5 years were pretty bad until I was referred to an MS specialist by my neurologist.  She finally got me on a med that actually worked and, it's kind of leveled off now. I was diagnosed right when tysabri came out for the first time.  I had one infusion and three days before my 2nd infusion, it was taken off the market.
So I went to copaxone.  It seemed to have the least side effects from what I read.  The first few
months were great as I never missed a dose.  Then I got tired of having to give myself a shot every single day.  I started missing shots every once in a while until I started missing weeks at a time of shots.  I had an exacerbation when my neurologist said it was time for a new drug.
I went to betaseron and was so excited to only have a shot every other day.  It went well for a few months until I had another exacerbation.  That is when my neurologist referred me to the MS specialist.  She gave me 3 med options, all of which were chemo drugs.  I went to see my neurologist again after I saw her to see what he thought of what she said.  His response to pretty much everything she said was "Tony, I'm not familiar with that."  I chose the drug rituxan and Dr. Hawker became me full time neurologist.  Before her I was having 3 or 4 exacerbations a year.  After her and the rituxan, the exacerbations stopped.  I haven't had one in almost 5 years now.

 Dr. Hawker was only comfortable keeping on rituxan for a few years and then, as she put it, "Who knows what else will be out by then."  So after 3 years, I stopped rituxan and gilenya, the first oral ms drug was out.  I jumped all over that one.  Unfortunately, Dr. Hawker left her practice to go work for Eli Lilly, the pharmaceutical company, and I started seeing the neurologist who took over for her at Ohio State.  He's not much older than me and I'm happy to have a neurologist who isn't gray haired and looks like he will retire in 5 years.
When I was first diagnosed, I heard a doctor talk about how important it was with ms having a good medical team you were comfortable with.  I have the best PCP and neurologist I could ask for.
Other things about me, besides ms are I love watching baseball and football.  The Reds and Bengals are my favorites as I've lived in Cincinnati my whole life.  I remember the last time the Bengals were in the Super Bowl in 1988 when I was in the 4th grade and the last time the Reds won the World Series in 1990 when I was in the 6th grade.
Music and movies are also a big part of my life.  My favorite band is Cake and while I have many favorite movies, if I had to pick one it would be The Shawshank Redemption.  Since MS came along, I've really gotten into movies with hopeful messages, like that one.
Until next time!


Tony Bodmer, Columnist

Finally, a job again!
Some people may think getting to write a column here is no big deal, or even a pain but, for me it is an honor.  I had to stop working 6 years ago when I was 28, thanks to MS.  I complained about it all the time when I was working but, now that I can’t, I miss it so much.
     When I was told I could write a column here I was so excited.  I’m not getting paid like a job but, getting to do this makes me feel like I’m working again.  I consider each column I write here to be important  and, hopefully they can teach people things they didn’t know about MS.

I was diagnosed on December 7, 2004 and until that day, I knew nothing about MS.  Now, nine years later, I know more about it than I ever cared to.  I know people feel too embarrassed to ask questions but, I wish they would.  It worries me that people just assume they know what’s going on and, I really don’t mind answering any questions someone may have.  I know I didn’t know anything about MS until I was diagnosed and, now I take it as a responsibility to educate people whenever I can.
    To me, this is basically the perfect job.  I get to reach out to people and, there’s no meetings.  That was by far my least favorite part of working.  People might think doing this isn’t that important but, to me it is very important.  I have something to do every week and, if I do my job right, I will be educating people, which I think is very important.