Caregivers Cost for ALS

In January of 2012, I was gearing up for my next triathlon season. Now at 53, single dad of three, working two jobs, I wasn’t planning on setting world on fire, but I had my goals. Swim the Save the Bay, 1. 7 mile swim, in less than 53 minutes (my age).  Do at least three Olympic distance triathlons, as well as one half ironman tri, plus throw in a century (100 Mile) bike ride and of course a few short road races for fun. Had my plan, various training partners, then a strange thing happened.

As I started my program I noticed my left arm could not lift as much weight as my right, no big deal, it would catch up. Then had trouble lifting arm overhead, and why was my right foot slapping ground, and why did my mouth feel droopy? Stroke, too slow coming on, pinched nerve, no pain, what then?

Finally in end of September I got to see a neurologist. She hooked me up to a bunch of electrodes, and for next hour or so, shocked every muscle I had. Said I was good sport, felt like high school science project gone wrong. She left room, came back fifteen minutes later, asked if I knew what ALS was, no I answered. With tears in her eyes, she explained, basically told me I had two to three years to live, and should get my affairs in order! WTF!!???

So, after a second and third opinion, it was confirmed, I was part of a growing number, of relatively young, healthy men and women struck down with this. Once you are part of this group, you start hearing all kinds of stories, people who pass away in those who are barely hanging on, for years, those living productive lives, for years, those who, for them, the illness seems to have platued, and stopped. I didn’t know and don’t know how my journey would go. The easy plan was take the three years, let my money run out, and go quietly away, not being a ”burden” to anyone!

 As time passed I had many good days. People I had not seen in years contacted me, good friends became great friends! Then during summer of 2015, complications showed up. Needed emergency tracheotomy, spent five weeks in hospital came home to needing 24 hour care!  So maybe my plan would work out.  l burn through my money, and just drift away. THEN a funny thing happened on the way to death! } I decided I NEEDED to live, WANTED to live! Realized too many people cared, and that I cared about too many people! My sons were starting their lives after college, need to see what happens there. My daughter was going to graduate high school, I wanted to see her play sports, go to proms and help her find a college, career and SO much more! I am finding I have much more to contribute than I thought, not just to my children, but to others, to show how to live a full life, with a community of love and help!

Now my plan has turned upside down! IT LOOKS LIKE I WILL OUTLIVE MY MONEY! While community, friends, and friends of friends have been generous, I can only go to that well so often. With nursing help running at $10, 000.  plus a month. Electric cost between $400-500 per month, takes a lot of equipment to keep me going! Cost of periodic upgrading my wheelchair, as my mobility changes, not to mention upgrades to my van. Not really safe driving up and down a ramp, instead of using a lift. Have I mentioned the various drugs, constantly changing, to try and find the right mix to keep me breathing, keep me from cramping up to a stiff board!

So now I reaching out to new sources of income, people, groups, foundations, and people helping people! One time gifts, yearly grants, support through supplies. ALS is TERRIBLE thing, but I understand why Lou Gehrig said he was the luckiest man alive, he found compassion and friendships as I have. In his day the science and technology was almost nonexistence for ALS.

Today great strides are being made. Stem cell research, using a patient’s own cells is very promising. The technology is making everyday living easier, I am writing this using my eyes! I can use same computer to talk and operate my TV. While great it cost me thousands of dollars, as did my wheelchair, even with help from insurance.

The reason for this letter, breaks down to that while my ALS has continued to progress, SO HAS MY DESIRE/NEED TO LIVE PROGRESS!! Though to live a productive life, it will continue to costs hundreds of thousands a year! So I am forced to do what I am loathe to do, ask for major financial help. Sometimes I catch a reflection of myself, or a picture, I am always taken aback! Who is that person, certainly not the same person who rode hundred mile bike rides to raise money for charity, or entered multiple triathlons for charitable causes!

No this is a totally different physical guy! Though the same mentally tough guy, who has to make a difficult decision. Do I ask for charity from people who know me not at all, or know of me and my plight!? There is a saying that you never know the answer, if you never ask the question.

My question to you is, will you help in my quest to raise one hundred fifty thousand dollars to help me live a productive life with my family, and help continue the fight against ALS.

SINCERELY

David P.  Leys, JR

401-575-6621

[email redacted]