One morning about eight years ago, I mentioned to my husband, David, that I had been feeling very tired lately. I felt as though I couldn’t shake off a virus. We both shook our heads and went forward with our ridiculously long days.
As the months went by, it became almost impossible for me to stay awake at work. I kept walking into door jambs, and had bruises all over my legs. I finally realized it was time for a physical. That is when my journey with multiple sclerosis began.
After experiencing multiple falls and feeling progressively worse, it took several doctors more than a year to diagnose me with primary progressive MS. I was 36, the mother of two young children and happily married to the love of my life.
I was told I have the rarest form of MS, which affects only 3 percent to 15 percent of patients. It is a sentence of a long, slow progression where you don’t get better, you just slowly get worse and worse.
The doctors told me that there is no magic pill or injection that will enable me to go back to my previous life – walking without a cane and enjoying all the wonderful moments I should with my family. No, sorry, that is never going to happen. The damage is done, never to be repaired; we just need to get it under control so we can slow the progression down.
The realization that this exhaustion, pain, vertigo, numbness, confusion and use of a cane is forever was life-changing.
Of the thousands of people affected by multiple sclerosis in Western New York, three are in my family. My sister was diagnosed 30 years ago and my sister-in-law was diagnosed two years ago. Our lives have been changed in ways that we could never have imagined. But with the help of our doctors, family and friends, we adjust to the obstacles this disease continues to throw at us each and every day.
Although MS has taken so much from me and many others, and my bad days outnumber my good, I am determined to help in the quest to find better treatments and a cure. Buffalo’s Baddest House Party is an idea I have had for a few years. It came to me in a dark time in my trials with MS. I was in bed 18 hours a day, too exhausted to breathe. I began to look back at my life and remembered a time when I was full of vigor.
I always loved to dance. Any chance I had back in 1986, I would sneak into nightclubs and dance for hours. Today I can’t walk properly, let alone throw some moves on a dance floor. I really miss it. So I thought that re-creating a night where we celebrate the great energy, music and dance moves of the ’80s was a way to celebrate the possibility for a cure.
As I started to tell folks of my plan, it was amazing how many other sufferers I found. I also discovered how little most people know about this chronic disease. So in addition to fundraising, this event offers us an opportunity to educate the community about MS.
My goal is to bring people together to raise money to wipe this horrible disease off the face of the earth. If we can find a cure for MS, we may be able to cure other autoimmune diseases as well.
So please join me on March 16 at Statler City for Buffalo’s Baddest House Party (www.BuffalosBaddestHouseParty.com). As Bunny Armstrong, said: “Life is not about getting through the storms, but about dancing in the rain.”