Christine Peterson wrote in desperation a letter to people like President Bush, Oprah Winfrey and Montel Williams, asking the question: Have you ever met anyone with ALS?
“It amazes me how little recognition this disease gets,” Peterson said in her letter, which got no response.
Christine Peterson was first introduced to the disease after her father, Lenny Peterson, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, in 2005.
The purpose of her letter was to get support for her father and raise awareness of the disease.
ALS is a neurodegenerative disease that affects the neurons that manage muscles of the brain and the spinal cord.
These neurons die and as muscles cannot work, it eventually leads to death, said Sonja Zimmer, patient services director for the ALS Association Evergreen Chapter.
“Most muscles are protected by neurons so when they die, patients usually die from complications of respiratory diseases, and as the illness progresses they’re unable to walk, talk, move or eat,” Zimmer said. “The average life span after diagnosis is from two to five years.”
ALS is an illness that typically affects men and women between ages 40 and 70. No real cause or cure has yet been discovered.
Lenny Peterson was always an extremely active man, whose nickname was “the Energizer bunny.” Christine Peterson also described her father as being a person who always lived life on the edge, who had a heart of gold, and was an expert at making friends everywhere he went.
Christine’s eyes sparkled when she talked about her father’s ability of seeing the good in everybody and keeping a smile all through his painful journey with ALS.
“He was amazing, he never got angry,” she said.
She explained how it always was her father who took care of his wife, since she had been diagnosed with multiple sclerosis (MS) a number of years before.
After Lenny Peterson was diagnosed with ALS, however, those roles reversed and it was his wife who took absolute care of him.
Christine said that her father was always a motorcycle fan, an animal lover, and an enthusiastic loving father and friend throughout his life.
But as a consequence of ALS, Lenny Peterson completely lost the independence he was always known for and was destined to be taken care of by all those who were once under his protection.
“He never ever complained, and always had hope for a cure,” Christine said. “He was so cool, I adored him, still do.”
Lenny Peterson slowly began losing his ability to move his hands, then his whole body. Soon he was bound to a wheelchair, breathing with the help of a ventilator and eating only through a feeding tube.
In 2007, two years after the diagnosis, Lenny Peterson died. As with most ALS patients, it was from his inability to breathe properly, and he eventually suffocated.
“I really feel that there’s a cure within our reach,” Christine said. “My father passed away, but the disease needs that recognition.”
Together with physicians around the world, the ALS National Association is working to find both a cause and a cure for the disease.
Individuals like Tracy Thompson and his family have been living with ALS for four years.
There are a total of 15 cases of people struggling with ALS in Federal Way, said Sonja Zimmer, patient services director.
Tracy Thompson is one of them.Thompson is bound to a wheelchair, and is only able to eat with the help of a feeding tube. He is unable to move anything in his body, except a finger on one of his hands.
“What has held us together is being Christian,” he said.
Thompson, who has been part of an ALS support group for a number of years, said that it’s very important to be part of a group regardless of the illness.
“Take it one day at a time, relax, and don’t worry about what’s gonna happen next month,” was one piece of advice he had for people who suffer from a terminal illness.
With a constant smile on his face, recently combed shiny red hair and a joke every time he had a chance, Tracy Thompson opened up about every detail of his journey through ALS.
Among the things he misses the most, besides riding his motorcycle and working on the yard, is not being able to drink a nice cold glass of water with cubes in it — and picking his nose.
His wife, Carol Thompson, said that it’s not uncommon to see that many of the people diagnosed with ALS were always very active throughout their lives.
“I lost my arms, then my legs, and can’t hold my head up, but every day you learn something new,” he said.
Perhaps one of the most important factors that have helped Tracy go forward with his life is the unconditional love of his family and volunteers who work day after day to make his journey as pleasant as possible.
“I never did what volunteers are doing for me now,” Tracy said. “No skill is too small to help someone. There are so many things out there, and if you open your eyes you will see the need.”
Two years ago, his son Nick declined a very promising job in Arizona to take care of his father. Before that it was Brian, his younger son, who took care of him.
“He’s got a little bit of time and I want to take care of him, because he took care of me,” Nick said.
But more than being a prisoner of ALS itself, not being there for his family hurts Thompson the most.
“I won’t get to see my sons get married,” Thompson said.
Although Tracy Thompson depends solely on other people to help with tasks that most human beings take for granted, positivity and faith are his main mantras in life.
“Bills are getting paid, both of my sons are healthy and moving forward with their lives, there’s someone to put me in bed, and wake me up in the morning, and also give me a mohawk when needed,” Tracy said, smiling.
“When he was first diagnosed, we talked about regrets, and what he wanted to do while he still could. We discovered that we just wanted to live each day, rather than look for fantastic opportunities,” Carol Thompson said.
“ALS stinks. Not only does it take away Tracy’s ability to do things for himself, but it can also steal his dignity. We’re choosing to make sure that doesn’t happen to us. Life is good, we’re surrounded by wonderful people, and God has blessed us greatly,” she added.
“Stick it out. Don’t underestimate your time to help other people,” said Tracy Thompson with a peaceful and calm voice. “Heaven is consolation.”
Contact Aileen Charleston: firstname.lastname@example.org