The year is 1985 before the symptoms of MS began. I was leading what most would consider a normal life for a newly married, young, working mother. A typical day for me included: getting up, taking a shower, dressing, brushing my teeth, getting a one-year old ready, fixing and eating breakfast, driving to day care and then on to a full day with my first grade class.
A year later in 1986 my body started to change. It started with a tingling in the little finger on my left hand. This tingling eventually progressed to the entire left side of my body. During this year I went to many doctors and had numerous tests preformed. The tingling would at times get worse or go away completely. The doctors and my family were baffled!
Over the next four years, even though I didn’t know it, I began my battle with MS.
Now it is 1990. We owned and operated a Fitness Center in Edenton, North Carolina where I taught aerobics classes. We now had two energetic boys, and I performed the daily responsibilities of taking care of a family. My symptoms returned and continually got worse.
In 1991, we left North Carolina and moved to Virginia Beach where I became a special education teacher. Over the next four years the doctors and tests continued. MS, along with other diseases such as lyme disease, are now being suggested as to what may be wrong with me, but none of the doctors or tests could say for sure what I had. Finally, in 1995 the neurologist uttered the words “You have Multiple Sclerosis”.
1995 to 2000 were very challenging years for me and my family. I walked with a slight limp, I fatigued very quickly, and the heat and cold had a tremendous effect on my body. I was losing my ability to function, I was going back and forth between using a walker and a wheelchair, I had lost my fine motor skills, I was to the point that I was afraid to drive, I was fighting for my life and losing! In 2000, I was not able to function as a teacher and my symptoms forced me to retire.
My MS has progressed to the point that I can no longer care for myself and I rely on caregivers for all my daily needs. A typical day for me now includes: someone getting me up, someone giving me a shower, someone dressing me, someone brushing my teeth, someone fixing and feeding me breakfast, and doing everything else for me for the rest of the day. My current challenges are finding competent caregivers and surviving in a world which has little time or patience for the handicapped.
After almost ten years (1986 to 1995) of countless tests and doctors – we had an answer. We had no idea what MS was! It was a double-edged sword – the doctors told us what Cheryl had, but could not tell us how she got it. We didn’t know if it was going to get better or worse, and there were very few medicines for people suffering with MS. As we became educated about MS, we learned that some people go through life with very few symptoms, some people like Cheryl get progressively worse, yet some people go blind and become bed-ridden in literally months. I think that is when Cheryl and I went through some of our hardest times, not so much physically but emotionally. Now we knew what to call her symptoms but had no control over what was going to happen next. Learning to control your emotions and conditioning yourself to handle whatever the future may bring can be a daunting task!
So here we are. In a short 24 years, our lives have progressed to what we have told you. Yet we are the lucky ones! We have each other, we are blessed with two wonderful sons that support us is many ways, we have an extended family that helps us, we have friends and neighbors that help when needed and keep us sane. Cheryl and I often talk about the people that are suffering with MS that don’t have this kind of support.
Now the doctors and tests are better able to diagnose MS. Now the people that have a tingling in their little finger have a chance of new procedures and medicines. These new medicines and diagnosing procedures take dedicated people and money! Having lived through this and knowing this prompted us into action. In 2006 Cheryl, Ryan, Shawn, and I, with a handful of dedicated volunteers, founded The ziMS Foundation. The Foundation has two main goals: raise money and raise awareness! The Foundation has two missions: use that money toward research to find a cure, and to help people with MS survive in their daily lives.
MS is a disease quite close to my heart. In 1995, my mother Cheryl was diagnosed with MS, a chronic and unpredictable disease that affects the central nervous system. MS affects roughly 400,000 Americans and can impact the body in almost as many ways. I look at my Mom’s condition as an influence on my development as a person. It forced me and my brother, Shawn, to assume responsibilities in our home at an earlier age than most of our peers.
As President of the ziMS Foundation, I am excited by the prospect of giving back to my community and finding a cure for this unpredictable disease. My family has given me the support to fulfill my dreams. The Washington Nationals have given me the opportunity to play the game that I love at the highest level in our nation’s capitol. I am thrilled to have launched a foundation that I hope can make a real impact in the life of my family as well as many others afflicted by MS.
In 2009 and 2010, I donated $200,000 to the Foundation. I also obtain autographed memorabilia from professional athletes which are auctioned off at the Foundation’s Annual Gala. Through my public appearances, I am able to promote the Foundation and help to “bring home a cure” for MS.
Without a doubt, living with MS has its ups and downs. My mom would never let us look at the negative aspects of how the disease affected our lives. Her attitude was always upbeat and positive. Doing the laundry, cooking and cleaning as a kid was tough to handle sometimes, but all those jobs made me grow up a little faster and learn to handle life’s responsibilities sooner.
To tell you the truth, it helped me a lot through high school and especially in college! I was the guy that everybody came to with questions because they knew I would have the answer. How to clean this, how to wash that, and what to cook for dinner were questions I was asked on a daily basis. I was “Emeril Lagasse” for my roommates because of the culinary skills I gained while cooking when my mom couldn’t. I also taught a lot of people how to do laundry as well. So, between the adversities that arose from my mom having MS and the positive attitude my mom instilled in me without a doubt made me into the person I am today.
The ziMS Foundation:
The Foundation is dedicated to the treatment and ultimate cure of MS by funding comprehensive support and educational programs. Over the last five years the Foundation has raised more than $500,000. www.zimsfoundation.org
Article taken from BAMS (Band Against MS)