The number of patients in the world with ALS is very small as compared with other diseases. ALS patients are told they have 2-5 years to live and so the number of patients that pass in less than 5 years, based statistically, is close to 80%. In other words, there aren't many of us around long enough to make a difference. In almost every case I have witnessed, patients who exceed these life expectations have made significant impacts in their community or in the lives of others. It seems as though, if you have more time, you come to grips with your own fate and allow yourself to reach out to others.
Being blessed with a slow progression and the associated extended years is one thing, but PALS who reach out and are able to make significant impacts within the first year or two are truly amazing. Imagine that your disease is progressing at a rate that is making it difficult for you to do just about everything and on top of that, you add all of the responsibilities of coordinating fundraisers, attending support groups, being the chairman on multiple boards and taking the time to chat with other patients; while all the while, planning for your own progression on a daily basis.
A few days ago, I had the opportunity to meet one of these PALS, AUGIE NIETO. Augie and his wife Lynn went through some very tough times in the first six months after he was diagnosed in March 2005 including Augie attempting to take his own life through an overdose of pills. At the time of Augie's diagnosis they had 15 and 18 year old son's. They have persevered and have now raised close to $30 million and have contributed almost as much time and money personally.
My sister was able to get us in to an exclusive event being held annually by the YPO (Young Presidents Organization). Luckily, this year it was in Denver. This is an event where George Bush was scheduled to speak, Julian Assange spoke and many other very successful business leaders (Julian omitted). Augie Nieto of course, being one of those successful business leaders with his success inventing the Life Cycle and subsequently the Life Fitness empire.Augie has come from a dark, desperate, fear that many ALS patients and their families have known in the beginning, to one of being a hero, a role model and one of the foremost fundraisers for ALS in the past five years. ( including MDA ALS site - Augie's Quest & ALS TDI )
Augie and Lynn's story was very close to our heart of course, but it was good to see an entire room exposed to “A day in the life” of an advanced ALS patient for the very first time. A room of people that has the financial backing to make a difference one day. Lynn did most of the speaking and Augie used his computer to give us his funny "Top 10 reasons it's good to have ALS" in the Dave Letterman style. They both were very adamant that the use of humor to get through each day was crucial to them. And dark humor at that - and we couldn't agree more. At the end of the talk, Julie, my sister and I found ourselves to be the last people in the room still chatting with Augie and getting a tour of his highly customized Dynavox daily operations software. (After all, he is on the board of Dynavox as well)
#10 - The fatter you are, the longer you live (B.O.B.)
#9 - You can give advice to you kids and they might even listen.
#8 - You get to take medical marijuana.
#7 - You can go to a strip club, have a lap dance, and not violate the "no hands" policy.
#6 - You never have to buy new shoes.
#5 - You can have bondage sex without straps… You just lay there.
#4 - You can hire out as a carpool dummy.
#3 - You can ask a woman to unzip your fly.
#2 - You can take a shower with other women and your wife won't complain.
And the #1 reason that it is good to have ALS is:
#1 - You get to experience the love and generosity of your family and friends-every day!
Again, thank you very much to Augie and Lynn for their time and a wonderful talk. I feel fortunate to have seen Augie, because Lynn mentioned that it may be the last time they fly. They came with so much equipment, caregivers and bags upon bags of tools/supplies that it may not be feasible again.