The ALS Association has served more than 20,000 people with ALS and their families this year, and that number continues to grow. Many of these families want to help spread awareness of the disease and share their stories with the community – share the many faces of people living with ALS, the caregivers, friends, and family members fighting every day. Although there may be some commonalities at times, no two stories are ever the same. Inspiring stories of love, support, perseverance, and hope.
We recently spoke with George Stevens – husband, father, grandfather, and a person living with ALS. George and his family live in Maine and have been very involved with The ALS Association Northern New England Chapter. Here is what George had to say about his journey with ALS in his own words.
Tell us a little about yourself and your family.
I am 63 years old. I grew up on a potato farm in northern Maine. Shortly after graduating from FFHS, I enlisted in the US Navy and became an Aviation Electronics Technician. I married my high school sweetheart, Cindy, and we were blessed with two children, Mark - 41 and Kelly – 37, and now enjoy the love of 6 beautiful grandchildren! After 10 years of active duty, I left the Navy to pursue a career in radio communications, returning to northern Maine. Throughout my career I held various supervisory positions, including owning my own Motorola shop for several years and became known as an expert in my field throughout the state of Maine. Once our children graduated, we relocated to southern Maine, where we still live today. My wife and I have enjoyed traveling and have been to Ireland twice, visited England, lived in Iceland, and have been to several states over the years! Life has been good and full for me.
When were you diagnosed with ALS?
I was formally diagnosed with ALS on September 28, 2018.
How have your friends and family supported you through your journey with ALS?
My friends and family have been an incredible support. My wife continues to read of ALS reversals, protocols, and supplements, treatments and clinical trials, she left a job she loved to become my caregiver. My son and daughter-in-law put together a go fund me and other fundraisers and are just a phone call away. My daughter and son-in-law sold their home and suggested we build a home together so they could help more, and we are enjoying that beautiful home today.
My colleagues and friends at work immediately put together a catastrophic leave bank. My sister gathered church members and began working on a prayer quilt. Friends and family came and visited, and some came to help us pack and move. We attended a family reunion in California and took an amazing family vacation to Ireland and everyone offered, and still offers, prayers. The love and support are ongoing as friends and family check in on us regularly, send us articles on treatments or medical announcements. It’s difficult to know what to say or do, but we feel the love. The VA has been a godsend, as well.
What methods have you used to stay positive?
We remain positive by keeping busy and keeping our faith. We pray daily and are so thankful for all others who offer prayers for us. We have traveled, we spend as much time as possible with family and friends, we’ve sold our home and built a new multigenerational home where we now live with our daughter, son-in-law and four grandchildren. We listen to music, watch documentaries, enjoy cooking and eating, going for rides, and time spent listening and watching our grandchildren brings such joy!
What are some of the ways COVID-19 has affected you and your family, particularly in how you live your life as a person with ALS?
Initially it was so difficult, not being able to see or especially hug our son and his family. Visiting with masks or just from the door, not being able to go out to eat or even get groceries, it was very challenging initially. Eventually we started getting out for a ride, then agreed it was not living and had our son and family over and began living again!
What do you wish people would understand about this disease?
ALS is a horrible disease. It has been around for more than 100 years and yet remains so “mysterious.” While the body will become gradually paralyzed, and my brain will no longer speak to my muscles, I can still see, hear, smell, and feel touch. It is also so important for people to realize that clinical trials and treatments for ALS take way too long. Time is not something ALS warriors have to waste. Bringing awareness and urgency to this disease and a treatment or cure is vital.
What has been your experience with The ALS Association?
We have had a positive experience with our local ALS Association chapter, Laurie and Karla have been good at keeping in touch with us.
What would you tell someone who is thinking about donating to or volunteering with The ALS Association?
Do your research. Help spread ALS awareness. Be a volunteer. Always ask how you can help. It makes a difference!
What is your personal mantra or guiding principle? Is there a quote, song lyric, etc. that really speaks to you?
My personal mantra or guiding principle is living a Christian life, believing in our Lord, Jesus Christ.
Special thanks to George and Cindy Stevens for sharing their personal and heartfelt story of their journey with ALS. If you would like to share the story of your experience with ALS, please contact us at communication@alsa-national.org.
Join the conversation. Please comment below.