July 4th 2008

BODY, HEART AND SOUL
HAPPY FOURTH OF JULY

Body, heart and soul – three little words that one of the words, or two, or all three mean something to most people. All three mean a lot to me as I go through this horrible disease called ALS. My body is changing rapidly. I’m tired all the time. I am much weaker. I can’t put my socks or shoes on by myself. I have to always be careful of not tripping because my left leg is so weak. I haven’t eaten any solid food for 15 months. I have to take naps and use a machine to give me oxygen so I can talk throughout the day, as whenever I talk for awhile I have no breath left. I can’t walk upstairs unless I really push it and grab on to something. My talking is so slurry I’m embarrassed but we are getting a machine that will help with phone calls in the next couple of weeks that I’ll be able type my answers on a computer and with the speakerphone on the sound you hear will be clear and exactly what I typed, which will be great because that will extend my stamina too as talking takes so much out of me. Honestly I’m tired of the regime you saw I go through everyday in Melanie’s last update in Jim’s updates. I’ve been through a lot, 3 knee operations, and in the last 4 years: prostate cancer, hepatitis C and the year long program to get rid of it. So I know my body pretty well and it’s hard to admit that this little known, badly under funded and incurable disease is taking over my body. You all know I’ve been a fighter my whole life but this time I’m up against unbeatable odds. I’m not complaining but it ain’t fun let me tell you. That’s the body part.

Most of you know I’ve been an avid golfer since I started caddying when I was nine years old. It’s always been a huge part of my life. I even told Melanie before we were married that she would have to learn how to at least be able to get it around or you won’t be seeing me too much. I had a very good high school career, enough to be offered to a college golf powerhouse, the Florida Gators. But I declined because I desperately wanted to go to Notre Dame. Problem was no assistance of any kind, so you can read on the web site my Notre Dame story and how I got around that hurdle. I had a pretty fair college career, (I still hold the ND course record of 64 and the Notre Dame Open Tournament record of 274 (18 under par for four rounds) and a pretty good amateur career up until last year when I started tailing off a bit. I was a scratch golfer up until 4 years ago. Now this disease has taken something more away from me, it’s taken a piece of my heart. I can’t finish 18, or nine, I can just hit a few shots here and there along the way. My friends have been great and I still enjoy the friendship, the bantering and the jokes, etc. but as far as a player I’m basically done. For you that know me and how much golf has been a part of my life, this is a pretty big chunk. That’s the heart part.

The good news is that no matter what this disease does to me it will NEVER be able to take any part of my soul. I’ve lived a life basically helping people and that won’t change. I have about 50 rose bushes and of course I and my wife like them but it gives me the opportunity to be able to brighten up some people’s day that needs it. I live in a retirement area and the widows enjoy their “deliveries” so much it brings tears to your eyes. I’ve always tried to be polite to people as much as I can. I’ve always believed the more you give to other people, the more you will get in return. We live too much in I want it now, me – me – me society. It shouldn’t be that way. We’re supposed to help our fellow man.

This brings me to my last point. I’ve sent these updates out for a year now. I don’t know if people read them, have gone through the whole site or understand what I’m trying to do for as long as I possible can. I’m trying to educate people about ALS and raise money for the scientists, researchers and doctors who are desperately seeking funds to work on a cure for the disease. The problem is they can’t get pharmaceutical money because it only affects about 30,000 people in the entire US and only about 5,000 people are diagnosed per year. What’s worse is the time span from diagnosis to death is 1 to 5 years. I’ve already surpassed my “death date” from my original diagnosis Doctor. So there is no payoff for the big companies to invest millions and millions of dollars when there is no payback for them. Tough to look at it that way but as a businessman but I completely understand it. That’s why I am trying to raise as much money as I can to help the experts out, knowing that not one dime will help me.

In quite a few of my updates I’ve tried to make people aware that every dollar counts no matter what they can give. I’ve put it in as many different ways as I can think of. (Check past updates) This brings up the “one dollar means a lot to some people.”

After all these updates for almost a year I hope people are forwarding the website to their friends and contacts and are learning more about the disease.
I know its tough times for a lot of people as the economy is not the best, for many people associated with this disease the accumulation of the donated dollars is the only way this horrible, terribly under funded, little known, incurable disease will ever be able to have a chance at a cure, It will keep affecting people for no reason at all, be a tremendous strain on the diagnosed spouse, family and friends as well as being extremely expensive. Maybe it follows in the “it can’t happen to me or my family or my friends” category that many people think. Then it happens and they are in the same boat with no paddles to help. I hope that you think about that paddle and consider a donation, whatever it may be for ALS research, it’s not the amount, it’s the thought that counts.

I hope everyone had a Happy 4th of July. Enjoy the time with your family and friends and God bless you all.