I Fu$&ing Hate This Disease

The National MS Society is kicking off the 13th annual 3-day, 50-mile Challenge Walk: Charleston Challenge the weekend of March 1-3, 2013. I am planning to be a part of that event by walking fifty miles over three days and raising at least $1,500…OH VEY!

Most of you know my story.  My uncle Bobby was diagnosed with MS in 2002. I was 25 and had just moved home to Kentucky from New York City.  The day I moved into my new apartment in Louisville, was the day he was diagnosed.  But he didn’t tell me that day.  He didn’t tell anyone that day.  He wanted to be normal, so normal was helping me move furniture etc….Something no one who has just had a spinal tap or who has MS should be doing.  But as I’ve learned over the years, stubbornness seems to run amuck with him and nearly everyone I meet who has MS.

When he did finally tell me, I, like so many others, had no understanding of what MS really was.  I thought it had something to do with his back since he had to have a spinal tap!!!  I REALLY had no idea what was going on.

ImageUncle Bobby and Uncle Frank – Crazy runs in the family (notice their demure mother in the background looking at them like they’re nuts)

Here is what I did know: My mom had died of ovarian cancer ten years earlier. When she died, I was so determined not to live with my father (my parents were divorced) that I, Bobby and Alex took my father to court so my aunt and uncle could be my legal guardians…one week after my mother had been buried.  So my mom was dead at 42 and now my uncle was diagnosed with something so foreign to me that I just couldn’t wrap my head around.  I was dumbfounded.  My uncle Bobby was the only father figure I knew and WANTED to know.  I cried and cried and cried when he told me.  And then….because he didn’t falter like my mom, I kind of let his disease move to the back of my thoughts.

ImageMe and Uncle Bobby – 4th of July 2004

But just as he had explained, his disease had a slow progression.  The left side of his body slowly just seemed to let go.  His right calf muscle is enormous and his left leg looks like a chicken bone! He always walks with a cane now and always wears a brace on his left leg.  But unlike others with MS, cognitively he’s okay.  Which means he can still make me crazy and drive me to the edge of a cliff on a regular basis, but I wouldn’t want him any other way.

Fifteen years ago there was not one MS drug on the market.  If you received the diagnosis of MS, the doctor said, get some rest, get some exercise and hope for the best. Today, there are nine disease modifying drugs with a tenth about to released.  Fundraising dollars have fueled the insurgence of disease modifying drugs and it can only get better with your help.

Image

Alex and Bobby at Tall Stacks in Cincinnati 2006 – He was playing air guitar with his cane….priceless

The Challenge Walk: Charleston Challenge raises money for MS research projects and client programs (40% for important national research and programs and 60% that stays in the local chapter for programs that assist those individuals in this region living with the MS). The funds also help to raise awareness about the disease and to educate the public about the FDA-approved drugs now available which may delay or reduce future disability in many people with MS. Multiple sclerosis (MS) usually strikes adults in the prime of life between the ages of 20 and 50. MS is a chronic disease of the central nervous system affecting the brain and spinal cord, causing blindness, paralysis, and loss of movement. The symptoms are vast and unpredictable, bringing uncertainty to those living with the disease and the future.

 You and I are essential in this movement to create a world free of MS as there are only 400,000 in the United States who have MS; not enough to cure the disease. Rather, we need people like you to join the movement…people who can give their time, treasure and talent.

Help me by making a donation – large or small – to bring us closer to a world free of MS. Or, why not join me the weekend of the event? Become a participant and side by side, as teammates, we can work together to raise the funds to make a difference.

Click here to visit my personal page.

 

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