Fighting ALS, Fueled by Faith

A really nice morning for me is to wake up and pretty quickly find myself sitting on my back patio. I love to be outdoors and even though I am totally NOT out in the wild in my back yard, being surrounded by mature trees makes me somehow feel in touch with nature. The songs of the birds, the smells and the vast blue skies here are a gentle reminder that the world we live in is much bigger than my problems; that is refreshing for my soul. The weather has changed here and it is cooler – YEAH!! As you can tell the heat of the summer in Vegas is not my favorite. My wife, on the other hand loves the heat. Isn’t it interesting how two people can have the same set of conditions and react completely differently to them? I’ve joked with her that I need to get her a hot rock and a sun lamp to sun herself like a lizard in the winter, but that doesn’t really go over that well.

Since I last wrote, we went to New York City and a Disney Cruise as I mentioned in my last post. New York City was better than I thought it would be. With my ALS condition I was very concerned about how I was going to actually get around and enjoy the sights. We were so very fortunate to have been given the name of a charitable organization called Team Gleason. They offer services for people with ALS and are fantastic. We reached out because the ALS of Nevada indicated Team Gleason had a program to provide loaner power wheelchairs for people afflicted with ALS. We sent them a message and within a month we had a brand new travel power chair delivered to our door at no charge. We brought the chair and I was amazed at how good it did with allowing me to go do ALL of the things we wanted to do. We saw Aladdin on Broadway, went to the Hugh Jackman concert, went to the bagel shop, walked/rolled Central Park, and went to Rockefeller Center amongst many other things. God blessed our time there with good health and weather. We then flew to Fort Lauderdale and met the kids. The truth is that I get emotional even writing this because having all of my adult kids in one place is beyond amazing, but to know they prioritized taking their limited vacation time and literally carving out space in active school schedules to be with us for a week blessed me beyond belief. We ate more than a human should, we dressed up as Pooh and Friends and pirates for the theme nights, we played in two torrential downpours as the ship dodged tropical storms and made great memories. For all of you on the fence just know that a Disney Cruise will not disappoint. So well done and worth every penny!

We are now back in Vegas and actually planning a trip to Ohio to spend time with our family. Fall is my favorite season. We hope to see the changing of the leaves and plan to be present for just less than two weeks with them all and I get to see my parents, who couldn’t be more loving or supportive. I get excited thinking about it.

I wanted to thank so many of you for supporting me and the ALS of Nevada in the upcoming walk October 26. Your generosity and love is so very meaningful. We have really done a great job in raising funds and are excited for a great showing at the walk. I am also so very excited that we have some other locations where folks will walk alongside the Vegas walk. We even have a walk occurring in the UK, organized and led by a fabulous friend and colleague in support of our team. But none of this would have taken place without the leadership of those that put our team together. Friends in leadership roles from my employer and from WaterStart, an organization I was honored to be a part of for many years. Thank you!

We have changed supplement regimes again, based on an ALS reversal that we have learned about. Changes are not easy for my system but we are powering through. I was able to tolerate the high dollar medication relatively easily and we are hopeful that as I start round two tomorrow, we will have no complications.

Thank you for all of the support you have shown me and our family. We are optimistic in our fight with ALS, but rest in the truth that through what Jesus accomplished, we have already won!