I was 26 working as a manager of a computer software store as well as applying for entrance into Washington University’s M.B.A. program when I first noticed the signs of what would become a very different path for my life. The first symptoms that I noticed was an unusual weakness in my left hand and an overall lethargic feeling so I started a ten-month long odyssey to discover what could be causing my 
problems. This is typical for PALS (person with ALS) during the diagnosis phase of my disease. I was diagnosed in October 1993 following my 27th birthday after months of frustrating misdiagnosis and questioning myself if I was making up my problems. The doctors told me to basically go home and start planning my funeral.
I went through about 6 months of depression, anger and confusion about what ALS was and what this meant to the rest of my life. I finally decided that I would not let ALS take my life away. I committed myself to living as normal a life as possible. To this end, I got married to an incredible woman, Lisa, in October 1994 and we had a beautiful daughter, Kelsey, in May 1995. During this time, I kept busy by helping my family's printing business, Chesterfield Minuteman Press, get started. It was also during this period in my journey with ALS that I saw the biggest decline in my physical abilities. My hands and arms kept becoming progressively weaker to the point that I couldn’t write, feed myself; take care of my basic hygiene needs or drive. This last item was particularly hard for me because I am someone who loves to travel and always find a different road home just to see what new things that I could find. My legs also started failing me as well but at a slower rate mainly because of the large leg muscles that I developed while I was an offensive lineman playing football. This was fortunate because this allowed my wife to slowly adjust to my weakening condition so as I became weaker she became stronger. Her helping me move became a source of amazement for anyone who saw this because she’s 5’5” and I am 6’2”. I came to the realization around now that our medical and governmental systems were grossly inadequate to help my family and me through this journey. Luckily I found organizations to help us out like the local chapter of the MDA and the ALS Association. They have not only provided the hope of ground breaking research but also clinics dedicated to ALS, equipment assistance, support groups, respite care, counseling and chats on their national website.
In December 1997, my breathing had declined to the point where I had to be rushed to the ER. In the hospital we were informed that my CO2 level was the highest they had ever seen in a conscience person and they were further amazed because I was lucid. It was decision time to go on a vent because they said I had maybe two weeks to live. I decided I had a lot of living and fight left so I went on a vent. Now you might be feeling sorry for me but I tell you don’t because this journey has made me a better man than I was or would have become. I have learned so much because of ALS especially what’s really important in life, the love of family and friends. I discovered that there is much more to life than our physical capabilities. I have grown in many ways, mentally, emotionally and spiritually as I lost physically. I also learned that we have many angels in our lives which I have many of mine with me today. I have succeeded in living with ALS by having a positive attitude and especially the love and support of my wonderful wife. Early on, we decided to do everything to keep our lives as normal as possible. Of course, Lisa has to take care of my basic needs but we have streamlined the process as much as possible so it doesn't consume our lives. I let my daughters participate in some of my care (this was very hard on me at first but I soon realized that her involvement made us closer and it made the disease less scary to them) and I still do as much as I can for the family like paying the bills on-line, helping with homework, discipline and playing with my girls. I can speak but it is very slurred however I resist using an artificial voice because I realized that those who are around me awhile adjust to my speech. I am now busier and more fulfilled than ever! I am enjoying raising my daughters; writing various things including a completed children’s book based on Mak Shulist’s life and death, which I am currently looking for a literary agent and illustrator for, and currently working on a fiction about a disaster occurring in the United States; researching my family's genealogy; running websites for my family and my high school class; running a weekly ALS chat on the MDA's website; and I put together a monthly World Research News Digest for ALS-TDF.
Our family has expanded some in recent years when we had our second daughter, Emily in July 2002 and again this past April with the birth of a third daughter, Jordan. I believe that despite the financial and physical strains of ALS, my wife and I have achieved our goal of living as normal a life as possible. So if I had listened to the negative perceptions, opinions and advice about ALS, I would have missed out on some of the greatest moments in my life and I would not be having the great time in my life that I am having now because I would not be around today.
