I realize that the title of this article and the two videos I have released are morbid; the truth is, that what I am experiencing is cruel and morbid. I never knew much about #ALS (Lou Gehrig disease) and wish I would never have had to learn the way I did.
When I announced it several weeks ago someone (that obviously doesn’t like me) wrote a reply “Stop, you are just looking for sympathy.” First, people that know me know I need no sympathy for any part of my life, I have truly had a great life and believe me, I have gotten every dimes worth out of this body. I have beat it to hell! Second, sympathy can’t help me, and it won’t stop this terrible disease from taking what it wants when it wants it from me. So, this comment is obviously from a very angry person.
The reason that I am publicizing this is because, I have learned that there are, so few Americans cursed with ALS that the money is not available to do the research to find the cause. No cause no cure. In the eighty some years that have passed since New York Yankee great Lou Gehrig brought ALS to national attention very little has been learned or done to delay the destruction of a person’s body caused from ALS.
People Need To Know
I am writing and videoing in the hopes that it will help bring a greater awareness of ALS to the public, which will hopefully garner donations. Just as importantly; I would like to help those afflicted with this disease or other termanal health conditions realize that every day we have is valuable and you cannot quit living your life. A dreams can beat a diagnoses.
I have learned much about this disease over the last 45 days and to steal a phrase “It comes like a thief in the night” and very slowly and deliberately robs your body of the things that allow you to live your life and be productive physically.
Eighteen months ago, I was walking 5 miles every day. I had a few trips and falls but chalked it up to being clumsy. For several years I had struggled with occasional back pain and that is what eventually lead to me having a neurological test done. Image you go to
the doctor for a couple of falls that you had and your doctor looks you in the eye and says that you have ALS and you have 3 to 5 years to live.“What? Not me you must be talking to someone else.” It was September 14th at 4:30 pm when he told me that. From that day I have slowly watched my body dwindle away. ALS has to be one of the cruelest diseases known to man. There is no cure and there is no slowing the relentless attack on your body.
Dressing is becoming more and more physically draining for me everyday. My hands are not working correctly, standing is becoming more and more difficult. After two months there is nothing physical that has not become a challange, The fact that it is difficult and painful is one thing but the emotional toll of knowing that today, as difficult as it is, is the best day I will ever have, I cannot express.
So, what exactly should you do while you are waiting to die?
First, you need to decide to live everyday that you have left. You have to look past the pain and discomfort and believe everyday has good in it. I am commited to continue working and have a tremendouse company supporting me.
Second, I set goals for myself this week. 30-day, 90-day 1 year and 5-year goals. Now why would a guy with 3 to 4 years to live set a 5-year goal? I refuse to give in. I believe in the mind body connection my mind will help me fight off death. Remember a dream can beat a diagnosis if you believe and don’t quit.
Third, keep preparing for the worst. We will all die eventually so being prepared can only be a good thing. Make sure that your family is taken care of and have peace even to the end.
Lastly, find the things that bring you joy and try to use them every day. Music, your favorite TV show, the outdoors. The things that bring us joy makes life worth living.