June 21, 2017. The day my life changed.
My brother, Brian Shifrin, at 41 years old, couldn’t straighten his left hand. His orthopedic doctor found nothing physically wrong and suggested he see a neurologist. Multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS) were being mentioned and that was when my stomach sank. I prayed for MS. Do you know how crazy that is to comprehend, to pray for a disease? The alternative, though, was a death sentence.
ALS — also known as Lou Gehrig’s Disease — is characterized by a progressive degeneration of motor nerve cells in the brain and spinal cord. When the motor neurons can no longer send impulses to the muscles, the muscles begin to atrophy, causing increased muscle weakness. The disease eventually affects the lungs and ALS warriors can no longer breathe on their own.
ALS is difficult to diagnose. It gradually prohibits the ability to move, speak, swallow and breathe. It can take years to receive an ALS diagnosis. Brian’s doctor said he was one of the earliest diagnosed patients she had ever seen. This gave us hope. We had more time. According to the ALS Association, people live with the disease for two to five years. Unfortunately, two and a half years later, November 16, 2019, my brother lost his battle.
Brian was a man of few words, but there are many ALS warriors who are very vocal about their story. Colorado resident Christine Gilmore is one of them.
Pam Shifrin: How did your ALS journey begin?
Christine Gilmore: I was an avid hiker. At 49, I was in the best shape of my adult life. In 2016, I noticed that hiking uphill was becoming more difficult; I was tripping and falling. My doctor ordered an MRI, and it was normal. Gradually, I had more difficulty and more falls. In late 2018, I saw a back doctor and he sent me to physical therapy. I told my therapist my left foot was slapping on the ground when I walked. With great concern, I was then referred to a neurologist and went through scans, blood work, spinal tap and other tests. February of 2019 I was diagnosed with ALS.
PS: What motivates you to get out of bed every day?
CG: Well, I have infusions 10 days a month, so I have to get out of bed for that. All kidding aside, I have a lot of living to do. I don’t necessarily do something meaningful every day, but often I am doing something to prepare for the next event. I still have things that I look forward to.
PS: How do you find peace?
CG: I believe that things will always work out. I have been through some pretty traumatic things in my life, and I am still standing. Metaphorically, of course. Prior to diagnosis and the pandemic, I had started yoga classes and meditation groups. I’d like to pursue those again. Being in nature is my go-to for peace. I love hiking and am pretty adventurous. I’ve taken my power chair on some precarious trails.
PS: What do you wish people knew about ALS and those with it?
CG: ALS was first discovered in 1859 and still has no cure. I have no idea why I was affected, and I probably never will. I’m also not sure how much time I have left either. Loss of my independence is my biggest challenge. I will eventually be trapped in my body, relying on a feeding tube and ventilator. ALS can be quite costly. The latest estimate is that it costs about $250,000 per year to take care of an ALS patient in the advanced stages. Medicare does not pay for caregivers, leaving that financial burden to the family. My final plea to you is to pursue your dreams while you can. Don’t wait until it’s too late.
During Brian’s last year with us, his ALS progressed very quickly. I created a fun ski challenge for my friends and I to raise awareness and money to help with his costs. Most people I spoke with were still puzzled as to what ALS was. They just knew it was why they dumped ice water over their head in the 2014 media craze: The Ice Bucket Challenge.
The Ice Bucket Challenge brought in millions of dollars for ALS research, but what I found was there were limited funds to actually help people live with ALS. My ski challenge, SHIFRUNS, has become the main event for Colorado non-profit, Runs For ALS, Inc. On Tuesday March 29, 2022 at Vail Mountain, we will ski once again. Since its inception in 2019, SHIFRUNS has raised over $20,000 for ALS warriors. Please go to runs4als.org to register and find out more information. In my brother’s memory, we are “shifstrong” and devoted to bring just a little bit more peace to those living with ALS.
Please go to runs4als.org to register and find out more information. In my brother’s memory, we are “shifstrong” and devoted to bring just a little bit more peace to those living with ALS.
Photo courtesy of Pam Shifrin.
Originally published in the Winter + Spring 2021-22 issue.