Colorado Gives Day – Brandon and Samantha Conley
“I am Brandon Conley’s wife, Samantha, and Brandon has been living with ALS for over two years now. We live in Evergreen Colorado, and we used to enjoy all the Colorado sports, activities, and adventures that the mountains bring. Brandon was an avid skier, hiker, camper, and mountaineer. This disease has been the most devastating for someone that was so active and loved outdoor activities. And it has been excruciatingly hard as his wife to watch him lose all his favorite activities. We loved to do all these activities together, which now I just do by myself or not at all because I am a caregiver for Brandon. It’s been a series of losses over and over again.
Brandon was diagnosed with ALS shortly after we got engaged two years ago. After we received the diagnosis and learned about the very rough and devastating road ahead for ALS patients and their caregivers, Brandon stated he didn’t want me to go through it and said we could call off the engagement. I refused (naturally) and instead, insisted we get married sooner than we had planned so that Brandon could fully enjoy our wedding together. I knew the day I accepted his engagement ring, was the day I made a commitment to be with him forever, no matter the circumstances. So we rushed the wedding, got married two months later, and have been married for one year now! We have learned so much this year about what marriage truly means when they say “through the good and bad” or “in sickness and health”. There have had countless losses and sacrifices over this last year, but we are a team and we love each other. And I know Brandon would do the same for me.
Brandon is currently on an Extended Access Program (EAP) program for the clinical drug called “Clene”. We have found it to be very helpful with his energy and symptoms. And since it is an EAP program, he can still use holistic medicine and protocols which we have also found to be extremely helpful. Brandon has lost a great deal of mobility throughout his body, mostly his hands, and overall strength. Speech has worsened too. Brandon uses a wheelchair when we need to walk long distances. His ability to walk is slowly declining. But we continue to do our own research and try to live the healthiest lifestyles possible to help with recovery and slow down the progression.
We both are still working full-time jobs, but it won’t be long before Brandon will have to resign and I will be his full-time caretaker if there are no better treatments available. Brandon already needs help throughout the day with things like getting dressed, getting ready, eating, opening things, and just daily tasks. Luckily, I work from home so I am able to help with his daily needs. We have started fundraising efforts to help with the astronomical cost of ALS, as it isn’t recognized by our healthcare system and is not covered by insurance. We are also starting the process of making our home disability friendly, including wheelchair accessibility, and all the financial stress that it also brings. Fundraising has been the only option to help us with these expenses.
As a family, we are strong in faith and we have hope for a cure so that no other family has to experience what we are going through. We choose to focus on the positive strides in the ALS community. But we also choose to be activists to promote awareness and change in the healthcare system for neurodegenerative diseases. Brandon and I are currently developing our own non-profit organization to help other families with ALS and it should be official by this time next year (stay tuned!) We will continue to fight this monster disease for the rest of our lives so that nobody ever has to hear, “you have ALS” ever again.
Thank you for reading our story and please follow us on social media at @conleyba and @samkellyconley if you would like to continue to follow our story, or read our blog page at “Caring Bridge” for journal updates. You can find that here: https://www.caringbridge.org/visit/conleysfightals “