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Wide Awake: The Challenge
For some, the chill of ALS doesn’t go away

Brooklawn’s Tom MacAdams was one of those guys who was super active in his community – he even started a basketball league for young girls in his backyard. On Sundays in the summer, 120 girls came to his house to play basketball. So you can imagine the depth of the loss when he passed away in March at age 60, after a trying battle with ALS.

“He was a giver, and he was kind,” says wife Marie, who was married to Tom for 35 years. The couple has four grown children. Both Marie and Tom lived in Brooklawn pretty much their whole lives. (Tom was born there. Marie moved next door to him when she was 8, so according to Tom, she wasn’t really from Brooklawn.)

Tom was diagnosed in March 2013. A year earlier he had been diagnosed with something called frontal temporal lobe dementia, which occurs in 5 percent of ALS patients. Between the two illnesses, Tom’s muscle strength deteriorated, and he slowly lost his ability to speak.

“It’s an ugly disease,” Marie says. “Tom was a brilliant, strong man. His legs and his arms used to be so muscular. It was so sad to watch them deteriorate. He would point to them and look at us like he couldn’t believe what his body was doing. We had to stand there and watch this happen to him right in front of our eyes. There was nothing we could do.”

Tom lost his speech quicker than he lost muscle mass, so he spent time walking around Brooklawn trying to communicate with people. He had founded an annual wiffle ball tournament in the town years ago, and as it approached, he wrote down the new information and walked around town showing his paper to people. Marie says it seemed like one day he realized he wouldn’t be able to walk soon, so he started walking and walking.

In his final days, Tom’s neck muscles became so weak he was unable to hold up his head. “When his neck dropped, he was in a lot of pain,” says Marie. “So I would rub his neck. He would tell me his legs hurt, and I would rub his legs.”

Marie says Tom wasn’t afraid to die, because he had a strong faith. His mother passed away when he was 12, and Marie likes to think the two of them have been reunited. At Tom’s celebration of life ceremony earlier this year, nearly 800 people paid their respects to the family.

Tom – and others like him – give us the purpose for all of those ice bucket challenges we’ve been watching. As crazy as it’s been, those challenges have spurred three million people to donate $115 million, according to the ALS Association. (Last summer, the association received $2.8 million.) An official from the association’s Greater Philadelphia chapter, Tony Heyl, says they’re still trying to figure out how to disperse the money, since the windfall was unexpected. He added that if donors noted that 100 percent of their money should go toward research, it will.

Before Tom died, he attended a ceremony where Brooklawn officials planted a tree in his honor. Tom had been a town council member for 19 years. “He got to see that honor, and it made him very happy,” says Marie. “Now I look out my window, and I can see the tree. I think of it as his special spot.”

 

Marie and Tom MacAdams were married for 35 years. You can still donate to the ALS Foundation at alsa.org.

October 2014
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