"MY COLUMN THIS WEEK IS TITLED: 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.

MY COLUMN TODAY IS TITLED: 

Aren’t Dating & Relationships Hard Enough Already?  ADD MS TO DATING & OMG!

I remember when I first started dating as a teenager and, was so excited. Then, at 25, MS came along. At first I tried to wait as long as I could to mention it. Then I had to tell people, especially girls, right when I started talking to them because I had to have a reason I had no job and still lived with my parents. I managed to dance around those issues pretty well somehow until I had a first date and didn’t take my cane. Then walking to the car, I fell. That was an uncomfortable moment. I probably could’ve said I just slipped but, once I fell, I couldn’t think of that. I just kinda froze. We ended up being together about two months but, we just weren’t right for each other. 

 I met my current girlfriend, Kelly, on a dating site just for disabled people. We were both tired of dealing with non-handicapped people and, how they would usually disappear once they found out about our disabilities. Thankfully, together, we only see the other person. I’ve thought a lot too about how different it was for women with MS, if at all. Then I had a psychologist who specialized in working with people with MS. 

 She told me about a female patient she had who was dating a guy and hadn’t mentioned her MS. Then they got engaged. Now she had to tell him. When she did, he broke up with her. Not because of her MS but, because he started thinking about “What else hasn’t she told me?” 

 "I was having 3-4 exacerbations a year. They finally stopped on Rituxan-Gilenya has been continuing that role for 2 years now"

I was having 3-4 exacerbations a year Stan.  They finally stopped on Rituxan! Gilenya has been continuing that role for two years now.

I'm still on Gilenya, and still loving it.I have been on a number of different MS drugs in the 9 years since I was diagnosed with MS.  Copaxone, Betaseron, Tysabri, and Rituxan.  Rituxan was the only one that really worked for me but, my neurologist didn't want me on it more than 3 years.  As she said, "After three years, who knows what else will be out"  Fortunately for me, after 3 years, Gilenya had just been put on the market.
 
When I took my last dose of Rituxan, I already knew the drug I wanted to try.  Of course there are potential side effects, but what drug doesn't have that?  I was just excited after years of shots and IV's to have an MS drug that was just one pill a day.  Definitely easier than a shot a day.

After about a month, I was noticing changes.  I know Gilenya, like all MS drugs, wouldn't treat symptoms, but I felt like it was.  Biggest change for me was my balance sud
denly got a lot better.
 
After six months or so, it was time for an MRI.  Now I could see if it really was working.  I looked at it first with my neurologist's nurse practioner.  She said the words I never knew could sound so sweet.  "You have no new lesions."  I almost cried.  That was the first time in seven years, since I was diagnosed, there were no new lesions on my brain.  Last year I had my second MRI since starting Gilenya.  This one was a brain and spine MRI.  Once again, I had no new lesions on my brain, and the two lesions I had on my spine were gone.  Not completely gone, but the word my neurologist used was they were "dead."

 I'm still on Gilenya, and still loving it.  The only things I would change is having to call a company in Wisconsin (5 to 6 hours away from me in Ohio) to get my refills, which my neurologist tells me may never stop, or at least any time soon.  Plus seeing a dermatologist once a year to make sure I don't have skin cancer, which there is a whopping 0.5% chance of getting on Gilenya.  I also have to get tested to make sure I don't have macular adema, which is something that can grow on the back of the eye.  My neurologist tells me, if I get it, I just have to stop taking Gilenya.  That one isn't as much of a pain for me because I already wear glasses, and my opthamologist can look for it at my yearly appointment to see if my glasses prescription has changed.  Plus, an opthomologist (the one who got me diagnosed, and who my nurse relatives tell me is called the MS eye doctor in the area) told me noone had gotten macular adema since the drug was released, but I guess someone in the FDA trial got it so they have to make sure.

 There was a time they were going over the autopsies of anyone who had ever even taken one pill of Gilenya, including the person that killed himself.  There was one woman who died after taking one pill, but she had heart problems her neurologist didn't know about.  Before starting Gilenya, I had to have an EKG done to make sure my heart was strong enough.  So if you have heart problems, this is not the drug for you.
 
When Tecfidera came out, I heard so many good thing about it, I asked my neurologist if he thought I should change.  He said he han't seen any signifigant improvements on it that would make him think it was better than Gilenya.  He put them on basically the same level.
 
After I was diagnosed, I was having 3-4 exacerbations a year.  They finally stopped on Rituxan, and Gilenya has been continuing that role for two years now.  If anyone is curious about it, I would definitely recommend it, at least if you don't have heart problems.

HERE'S OUR STORY OF TRUE LOVE & MS & CEREBRAL PALSEY

Tony Bodmer and Kelly Boyce, Columnists, MSnewsChannel.com

Tony Bodmer
Columnist,
MSnewsChannel.com

Well, here is the story of me and my girlfriend, Kelly Boyce.

 We met on a dating site made specifically for disabled people. She has cerebral palsey to my ms.  To make it easier, we just call it cp.

I learned a lot because like ms, cp is not the same for everyone. When she told me, I had seen her picture and instantly said "No you don't." I almost said "But you look so good" lol

We had joined the dating site because we were both lonely and tired of telling people about our disability and never hearing from them again. There was an instant click between us and after the first time we saw each other was great because she just saw Tony, not Tony with ms and, I just saw Kelly, not Kelly with cp. I think the only thing we would change, if we could, is how often we see each other. Neither one of us can drive because of our disabilities so we only see each other when my dad can take me to her, or her sister can bring her to me. We are hoping to solve this problem soon because we are looking into apartments we can live with each other.

I know how the people feel who feel like they will never find anybody because back in March, before I met Kelly, I thought the same thing. That person is out there for all of us. Just takes a little patience. Easier said than done, I know, but it is possible.

She is enjoying writing this with me. I look forward to telling everyone when we get our own place.

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

Tony Bodmer, Columnist, MSnewsChannel.com
    
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: "MY COLUMN THIS WEEK IS TITLED: FINALLY, A JOB AGAIN"

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.

THIS COLUMN IS UNDER CONSTRUCTION