I was lucky enough this past Saturday morning to attend an ALS support group in North Riverside, Illinois. Attending support groups and meeting people with ALS (PALS) and their families is something I always look forward to. Some people have asked me why I go to support groups. Why spend so much time, Sarah? It doesn’t benefit your scientific research. That’s how you’ll really end ALS. Ha! Meeting PALS at support groups and other events helps me tremendously. I tend to be a perfectionist when it comes to my ALS research. Sometimes, I get so caught up in making every experiment, notebook entry, and poster perfect that I forget the real purpose. Attending support groups and meeting PALS allows me to fully comprehend the meaning of my work.
The ALS support groups I have attended in Illinois and Iowa have ranged anywhere from 2-25 attendees. One of the first support groups I went to had just an older couple, and the husband was afflicted with ALS. Regardless of how many people attend, support groups are incredibly heartbreaking, to the point where I struggle to hold in tears. Surrounding me are innocent human beings fighting an invisible monster. They are mothers, fathers, sons, daughters. They have children they love and goals they want to accomplish. And here they are, fighting the harshest battle they have ever experienced. As I listen to the daily struggles PALS are facing, whether it is using an oxygen mask while sleeping or ordering a motorized wheelchair, I silently yell at myself. Sarah, why did you watch so much Grey’s Anatomy? Why did you sleep so much this week? I should have spent more hours in the lab! I should have studied more biology chapters! It hurts me deeply to see these men and women in so much pain, with their bodies limp and voices slurred. People don’t deserve this death sentence. Every one of us is human. We all deserve to fall in love, grow old, watch our children graduate from high school, college, get married. We deserve to move freely, eat, smile, and breathe the air, not slowly suffocate in our own bodies. Nobody should have to suffer from ALS.
I always love taking the opportunity to share my ALS story, but when I’m with the families, I’m usually a silent listener, trying my best to hold in my tears. It’s hard to know what you should do when a man in his fifties begs you to rip out his dying muscles, tears streaming down his face. How should you react when you receive news that a young mother of three has recently lost her battle? There have been times when a family is overtaken by their pain, and the rest of the room waits patiently while they cry. It’s times like this when, even though they’re strangers, I want to sit with them, cry with them, hug them tightly, and tell them everything will be okay.
But Sarah, how can you even think about telling them everything will be okay? Nothing will ever be okay for these innocent fighters and their loved ones. ALS is an invisible monster. It has several rows of sharp teeth, each a foot long. It mercilessly bites innocent human beings, over and over again. While a person sits there helplessly, their family and friends sit beside them, supporting them, watching, crying, holding their hand.
The morning at North Riverside was incredibly inspiring. One of the first things spoken of was Riluzole (brand name: Rilutek). Riluzole is a drug that may increase survival of PALS by a few months. It was interesting to hear one PALS speak of positive effects from the Riluzole and another speak of negative effects. Later on, a PALS brought up the Deanna protocol and new caregivers were interested in this investigational treatment. The Deanna protocol was created by a retired surgeon when his daughter was diagnosed with ALS. It causes no harm to PALS, but scientists have not proven it has any real effect. In the past year, I’ve met a handful of PALS who are using the Deanna protocol, testing if it helps them live with more ease. A woman at a recent support group announced she thought it may be helping with her breathing and walking. It’s incredibly interesting to hear about various methods PALS are following to test improvement in quality of life. But it always crushes my heart to hear disappointed PALS announce to others at support groups that their method is doing absolutely nothing to help them.
Near the end of the support group, a caregiver remarked on how she sometimes felt frustrated that there was still nothing to help PALS. As I sat in my chair, listening to her tell others how she sometimes felt hopeless, I sadly gazed out the window to the snow and people outside the North Riverside Recreation Center. Men and women were walking by, dropping off mail in the mailbox, picking up their children from practice. Kids were happily talking and laughing with their friends outside the door, waiting to play a basketball game, and completely unaware of what was going on inside the room. I quietly wondered how many of these people knew about ALS. How much more could be done to help PALS if just 10 more people knew about the disease? 100? 1,000? In my head, I started planning ways that I could teach people about ALS. New ways to share my passion and my hope with the world. But I was pulled back into the room from my thoughts by the woman sitting next to me. The woman’s daughter and I shared a name – Sarah. Sarah is battling ALS in San Francisco, and her family and friends recently held a fundraiser for the cause. The mother reached down in her bag and pulled out a bracelet. She had brought it from the fundraiser and wanted me to have it. I thanked her and looked down at the bracelet. It was purple, my favorite color. On the front, it said, “#speed4sarah,” and on the back, “Make ALS History.” I smiled. Yes, studying more biology chapters, spending more hours at the lab, or reading more scientific papers will give me results. But taking those extra hours and spending them at support groups gives me a reason for those results.
Read Sarah Coglianese’s ALS story at http://nyti.ms/1AfL14h