May is ALS Awareness Month in the United States and one woman is taking it upon herself to educate people about the disease here in Kodiak.
ALS stands for amyotrophic lateral sclerosis and is also known as Lou Gehrig’s Disease. It is a progressive neurodegenerative disease that limits the brain’s ability to control muscles, often times leading to complete movement loss in different parts of the body.
“And there is no cause, there is no cure, or treatment.”
That’s 34-year Kodiak resident Sarah Thayer, who has made it her goal to inform people about the disease, which affects approximately 5,600 in the U.S. each year. Thayer said she became aware of ALS when her own body started exhibiting signs and symptoms of muscular failure.
“2005 I noticed something weird with my walking, my right leg.”
Over the course of two years, the weakness in her right leg progressed and she eventually saw a neurologist. He wasn’t sure what the cause could be and a series of referrals to other doctors ultimately led Thayer to an ALS specialist at a hospital in Boston.
“And I’ve seen him since 2010. He hasn’t given me a diagnosis of ALS, but it’s always been a temporary diagnosis, and what is listed in the three that he has given me for choices, you could say, is PLS – primary lateral sclerosis, which is either the same or a lot like upper motor neuron predominant ALS.”
While Thayer hasn’t been officially diagnosed with ALS, she said her trials in learning about her own condition led to a greater awareness of the disease.
“And the monster that it is.”
Thayer said ALS can affect different people in different ways and there really is no rhyme or reason to who develops it.
“Your walking can be very slow, your balance can be off, fingers not very nimble. And it progresses and you never know where the weakness is going to be. If it started in my leg, will it go to the left leg, will it go to an arm or a hand. When people are diagnosed it’s not the same on every person.”
Often people end up in wheel chairs or needing some sort of assistance. Thayer said the best analogy to demonstrate the effects of ALS is imagining a puppet with strings.
“You cut those strings and that’s what ALS can end up looking like and a person is helpless, you’re trapped in your own body. You have frozen or paralyzed muscles.”
Thayer set up a table at Safeway last November to spread awareness about ALS and said she received a lot of positive feedback from the community. In general, most people don’t know about the disease, which is why she’s putting on a fundraising walk this Saturday.
“I just want people to come out and learn about ALS and walk to honor those who are still living with it and in memory of those who have died of it.”
The ALS Walk 4 Life will start at St. Mary’s Catholic School at 9 a.m. Registration will be in the gym starting at 8 a.m. Donations will be accepted and all proceeds will go to the ALS Evergreen Chapter in Kent, Washington because there is no chapter currently in Alaska.