How am I still alive after 14 years with ALS?
It was March 2000 when ALS reared its ugly head and entered my life. I noticed some numbness that was originally diagnosed as Carpal Tunnel Syndrome (CTS). However, a visit to a neurologist "thought" I might have ALS. I had heard of Lou Gehrig's disease and knew the implications of the diagnosis. I was told most people succumb to the disease within two to five years.
At the onset of being told that I had ALS, I made a conscious decision to meet it head on and do what I could to help find a cause, treatment or cure. From 2001 to 2004, I made myself available for every study and trial I could enter.
It has been 14 years since I dropped my guitar pick on an early spring night. Those familiar with ALS know that walking, talking and breathing unaided in that many years are very rare. Many people ask, "How do you do it?" The honest answer is that I don't know. My best guess is I have an ultra-slow progression. I also try to maintain a positive outlook and good attitude despite living with ALS.
Although I was excluded from drug trials after 2004, I still wanted to help in some way and to be involved with finding a cause, treatment or cure for this disease. I became aware that 7 walks were scheduled by a local ALS chapter and my question was “had anyone ever completed all 7 walks?” It turns out I was the first to complete all 7 walks. After all walks were complete, my team had raised $104,000. Since getting involved with the Golden West Chapter, my fundraising efforts have exceeded $500,000. I have also done a lot of public speaking to bring awareness to ALS. I am currently on the Napa Valley Ride Committee and I am an ALS Champion. I will continue my efforts in the fight!
Team Challenge ALS Climbs to Defeat ALS
An amazing group of people came together for Climb to Defeat ALS earlier this month. The first Team Challenge ALS team summited Mt. Elbert in Colorado on September 7 and has raised over $65,000 for The ALS Association, so far.
We asked a few team members to tell us about their experiences.
“There isn’t a single caption that can explain the emotion I felt when I reached the summit of Mt. Elbert,” Megan Ruedisueli said. “I was tired. Sometimes it was painful. So many times, I wanted to give up. But ALS patients don’t have a choice. The disease never stops progressing. So, I pushed on.”
Megan climbed for her mom, who is currently battling ALS, and her uncle, who lost his battle with ALS last June. She said she felt “he was up there with me the entire way.”
Terri Rizzo Seim said, “We summited Mt. Elbert in memory of loved ones lost to ALS, as well as to honor those still fighting it. Lots of people gave me hope, inspiration, and courage to complete this journey. Some of them are family and friends I already knew [and some] are new friends that I met. We were blessed with the best possible weather, and I was blessed with some pretty awesome new friendships that will last a lifetime.”
Terri also climbed Mt. Elbert six years ago. She made that climb with her husband, Lionel, who passed away from ALS. “He was with me this time, too,” she said.
Karl Schachtner, featured in this video, was diagnosed with ALS in 2016. He summited the mountain as part of Team Challenge ALS and inspired everyone he encountered on the Climb.
“This experience truly has changed my life and I won’t ever forget it,” said Megan, who has raised more than $15,000 for The ALS Association over several years.
She had this message for her mom. “Mom, you’ve never once wanted to give up during this battle, and I promise you I will never stop doing everything I can to fight for a cure.”
Terri expressed appreciation for the team’s guides from Rocky Mountain High Adventures.
“The best motivational line of the day came from Jeremy, [one of the guides],” she added. “We got to a particularly steep area; I looked up at it and said to him, ’This part is gonna suck, isn’t it?’ And he said, ’Maybe, but if it does, it’s gonna suck for both of us because we’re doing it together.’”
Colleen O’Farrell, national manager for Team Challenge ALS at The ALS Association, was feeling extremely grateful in the days after the Climb.
“Thanks to all who donated so we can, hopefully, find a cure for ALS. Thank you to our incredible guides from Rocky Mountain High Adventures. We couldn’t have done it without them. And thanks to our sponsor, NNE Marketing. Most importantly, thank you to our group of participants, who had the courage, passion, and commitment to raise funds and awareness for this mission.”