As a parent living with ALS, there are ongoing concerns about about your ability to communicate and the impact of the disease on your children. Family members often share that the changes in their loved one's voice are one of the most difficult aspects of the disease.
Since his diagnosis in 2015, Miles McConnell and his beloved family have met these challenges together, fueled by their love for each other and willingness to give back to help others in our ALS community. They have also actively participated in many community outreach events with The ALS Association Golden West Chapter to raise awareness about ALS and inspire other people living with ALS and their families to get involved.
Please take a moment to learn more about how the disease has impacted their family and the many ways that they have gotten involved in advancing the search for effective treatments and cures.
Throughout his journey with the disease, Miles combined his passion of cycling and helping others, and became greatly involved in the Napa Valley Ride to Defeat ALS. Under his leadership as the co-chair of the event, in 2019 the Napa Valley Ride had 1050 participants who together raised over $1.2 million dollars in support of the mission and vision of the Golden West Chapter. He and his family have participated in many of our other Chapter's events including the Sonoma Walk to Defeat ALS. Together, Miles and his dedicated friends and loved ones that make up "Team (s)Miles" have raised more than $300,000 to advance the search for effective treatments and cures for ALS.
We are grateful to MIles, Dubie, Spencer, and Jay and their loved ones for their continued commitment to raise awareness and support for the ALS community. Below is a message from Miles to the ALS community, as a part of the #VoiceYourLove campaign.
Cherish Every Moment with Those You Love
By Miles McConnell
Living with ALS since 2015
Co-chair of the Napa Valley Ride to Defeat ALS and Walk
This time of year brings memories of two important days in my life.
The first memory is from February 13, 1999, the day I proposed to my incredible wife, Dubie. We had first connected upon the strong suggestion of my best friend, who said that there was a girl that I had to meet that day. He was right and ever since I did, I was sure that we would be together forever.
After a few years of dating, the time finally came to make it permanent. I asked her to join me on our favorite hike, but (for reasons I will reveal soon), I had to cancel at the last minute. We made the same plan for the next day, yet again, I needed to cancel. The following day, I attempted again but Dubie said she was "busy". I did my best to convince her otherwise but she had had enough of my cancellations. I was left with no choice but to go to her office and tell her that I wasn’t going to leave until she said she would at least have dinner with me that evening in my San Francisco apartment. Finally, much to my relief, she relented.
We had dinner, during which I tried to lighten the mood by steering the conversation toward funny and memorable moments we had shared. After dinner, I made dessert and to my surprise upon returning to the living room, she had turned on the TV and was falling asleep! I woke her up with dessert and an orchid plant to which I tied a wax mold of a ring I had designed for her. It took her a few moments to realize what was happening. By then, I was down on one knee, and proposed. She cried, said yes, and that was the beginning of our incredible adventure together.
The second memory that stands out in my mind was 16 years later, February 23, 2015 – the day I was told I had ALS. When I felt my first symptom of things to come on a beautiful spring day of backcountry skiing in the Sierra, I wrote it off as a bad day. When I sprained my ankle while running a few months later, I knew then that there was something wrong. After many different tests over a troubling period of months, I was told that I had ALS. I was 49 years old.
At first, I was filled with feelings of shock, disbelief, fear, and overwhelming sadness for my family. Over time, as I worked through these emotions through mindfulness and reflection, I came to accept this new chapter of my life. Dubie and our teenage sons have been my main source of strength throughout. The disease has severely affected my mobility, and has started to affect my voice. I try not to think about what life will be like when I am unable to communicate using my voice. But I know that when I need to face that challenge, there will be resources and solutions.
For me, this journey would not be possible to navigate without the help of my family, my friends, and the incredible community and organization of The ALS Association Golden West Chapter. In gratitude, I want to make a strong effort to be positive influence for our ALS community.
One way I have thrived is through participation in the Golden West Chapter's community outreach events. Initially, my family and I created Team (s)Miles for the Sonoma County Walk to Defeat ALS, and participated for two years. My wife and I encourage anyone facing ALS to join a local Walk to Defeat ALS near you. I have always been passionate about cycling, so when I heard about the Napa Valley Ride to Defeat ALS and Walk, I committed myself to participate every year. This will be the fifth year that my family and I are participating in the Napa Valley Ride with Team (s) Miles and the third year that I have served on the planning committee.
I believe that the ability to slow the progression of ALS is close at hand. Which is why your efforts to raise awareness about ALS are so crucial! It is people, like you, coming together and asking their network for support that gives hope and help to those facing this disease.
It is very important to me that my family knows how much I love them. While there is a lot of loss with ALS, one can still live for each day and cherish every moment. By joining me, and voicing your love to raise ALS awareness, you can help those suffering today and possibly alleviate future suffering. Together, we can work toward the goal of a world without ALS!