Learning about ALS for the first time: young people share their perspectives

Kyla and Vaughn visited their Great Uncle Murray in Thunder Bay a couple summers ago, making the trip all the way from Colorado. It was their first time meeting someone with ALS, and they were both affected deeply by the experience – choosing to write about it for school assignments later that year. Thank you to Kyla (now aged 10), Vaughn (now aged 12), and family for the opportunity to share what they learned about the realities of living with ALS. Their initiative and compassion inspires hope and optimism for the next generation and a future without ALS.

My Heartland Hero is my Great Uncle Murray. He is my hero because he has ALS and is still fighting it. ALS is an abbreviation for Amyotrophic Lateral Sclerosis. ALS is a type of motor neuron disease. It refers to a group of progressive, neurological disease that causes dysfunction in the nerves that control muscle movement. ALS is the most common type of motor neuron disease (MND). It is sometimes called the Lou Gehrig’s disease, after the famous baseball player who had the condition.The 2014 Ice Bucket Challenge aimed to raise awareness and funds for research of ALS. There is not a cure but many people are hoping that the medical community will find one soon.

Murray shows great perseverance. The meaning of perseverance is, sticking with something even though it is hard. One example of how he does that, is when he talks to people it takes a lot of effort for him. He has to pause to take short breaths out of the long tubes that provide oxygen for his lungs. He has to use a microphone to amplify his voice since the loudest he can talk is in a whisper. One more example of how he shows perseverance, is he continues to connect with people by email and handwritten notes/letters. Since he can’t use his hands, he has a friend write what he says to create a handwritten letter and he uses voice typing for emails.

Murray demonstrates a positive attitude. The only movement Murray can do is move his head a little bit to the left and right but mostly has it forward. This means that he has to really or allow other people to do everything (roll over, sit up, eat, change clothes, ect). He always has a positive attitude because even though he lives in the hospital he doesn’t let that affect him. He also has a positive attitude because he wants to help others who have the disease. He understands that the medical community will not find a cure while he is living, but he participates in the Walk To End ALS which is the largest volunteer led fundraiser for ALS in Canada. Statistically, 2 out of 100,000 people in the US get the disease yearly. That means if you filled every seat in Coors field, only one person would have ALS.

Murray is an inspiration to me because he keeps fighting to live. Murray has lived with ALS for almost 5 years. He was diagnosed in December 2013. Most people live between 2 to 5 years after diagnosis. Before Murray had ALS he had a normal/typical life. He had a job as a policeman and raised two sons. He inspires me to be grateful because I can walk and move where Murray cannot do anything by himself. I realize that I shouldn’t complain about things taking a little time or effort when I realize those things would be impossible for Murray. It makes me think on how I can learn new skills and get stronger while he only gets weaker. I learned that Murray does not let his disability define him. Now, when I see other people in wheelchairs, I know not to judge a book by it’s cover!

Today, we know that ALS is incurable. This is why my Great Uncle Murray is a hero to me. I want to be like him by always having a positive attitude and perseverance. Meeting and learning about him, has inspired me and changed me for the better.

Last summer, we took a family trip to Thunder Bay, Ontario, Canada, where my dad grew up with his older brother and parents. There are only 102,000 people in Thunder Bay, which is only enough to fill one and a half NFL football stadiums! It is interesting to note that the goalie for the NHL hockey team the Pittsburgh Penguins is from Thunder Bay, and brought the Stanley Cup to his hometown!

While we were on our trip, our family took a few hours to visit my Great Uncle Murray. We walked into St. Joseph’s Hospital, one of the only hospitals in Thunder Bay. As we walked through the doors, I got a blast of warm air in my face from an air vent in the ceiling that smelled like sterile needles and gauze pads. We took up an elevator to one of the top floors where Murray lived permanently. We waited in line for a while, as my great uncle seemed very popular in the hospital. Once it was our turn, I took a deep breath and stepped into the hospital room. There he was, my great uncle I never knew I even had, in a dark white hospital cot, taking breaths of oxygen out of a tube every few seconds.

My mom, sister and I hung back to let my dad and grandparents greet him and talk to him quietly for a few minutes. When they were done, Murray seemed to notice that we were around the door. My dad noticed this too, and with a little nod of his head to me, he called us three farther into the room.

“Hi!” Murray said brightly. “And who might you be?” he asked us politely.

My dad could tell we were a bit shy, so he helped us out again and said, “This is my wife Julie, my daughter Kyla, and my son Vaughn.”

“It’s great to meet you all!” Murray replied.

“You too,” I replied, a bit uncertainly, as I had never met this nice man before. This was the first time I had talked to Murray, and my voice was higher than usual and I was a bit scared because Murray looked intimidating, even in a hospital bed living with a disease called ALS.

ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. A-myo-trophic comes from the Greek Language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment. “No muscle Nourishment.” When a muscle has no nourishment, it starts to disintegrate. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (sclerosis) in the region.

We talked for a bit longer with Murray about his life with ALS in Thunder Bay. He asked me how school was going and what sports I played and things like that. It was very sad to see Murray in this position. It was sad to know that Murray will be in the hospital until he passes away. His disease requires all the help that he can get in the hospital. It is distressing that Thunder Bay doesn’t have a plan or place for young people with ALS to live, instead they live in nursing homes or hospitals. Murray looked a bit like my dad and grandfather, with a balding head and deep brown eyes. When it was time to go, we all said our goodbyes and I told him I really hoped to see him again soon.

We all took a picture together, and it was a very emotional time for us, especially me. We left the hospital and drove back to my grandparents’ house, which was where we were staying for the week. My whole family was very happy to meet Murray; my dad to see him again. I think it was a great experience for my entire family, because I was able to learn about people with ALS and what a struggle it is to live when you have that kind of harrowing disease.