fb-pixelDoug Oakley; ALS activist made others smile, got last laugh - The Boston Globe Skip to main content

Doug Oakley; ALS activist made others smile, got last laugh

Mr. Oakley traveled the country by motorcycle to raise awareness of Lou Gehrig’s disease.

Tempting though it may be to begin at the end, with Doug Oakley dancing on his grave, he’d probably want to start by offering some advice.

At a beach last July 21, celebrating his 22d anniversary with his wife, Patty, he recorded a video interview called “Doug-isms to live by.” Perched in a wheelchair, he wore a light blue “Life is good” T-shirt. Though he no longer could move much because of amyotrophic lateral sclerosis, his humor was unconstrained.

“As Patty says, probably the worst part is I ended up with a disease named after a Yankee,” he said of Lou Gehrig’s disease. “But it sure has given me the platform to try and inspire other people that come across hardship and adversity in their life, and provide them with some inspiration.”


Nearly four years had passed from diagnosis to that day at the beach. “One of my sayings is, ‘There’s no better day than today,’ ” he said. “Let’s do whatever it is we’re talking about doing and not put it off ’til tomorrow.” In those four years he rode a motorcycle to the four corners of this country, raising thousands of dollars to assist others with ALS and their families. Along the way, as he had all his life, he burrowed deep into the hearts and memories of all he met.

Mr. Oakley, who quipped in the video that the first thing that went through his mind when he heard the diagnosis was, “Oh, crap, I don’t have life insurance,” died April 23 in his West Bridgewater home. He was 50 and would want you to know he lived most of his life in Weymouth, only moving when illness made a wheelchair-accessible house close to his wife’s job a wiser option.

“I never asked the question, ‘Why me?’ Because once Patty and I decided we weren’t having children, I asked God in my prayers to give my life purpose and meaning,” ” he said in the video.


“God picked ALS,” he said.

From that point on, Mr. Oakley did the choosing.

Before the diagnosis, he was having difficulty holding his hockey stick at his regular Tuesday night games. After the diagnosis “they used duct tape and taped his glove around the hockey stick so he could still play,” said his sister, Sandra Darmetko of Whitman.

Mr. Oakley ramped up his game in the rest of his life, too.

“He always had a zest for life,” his wife said. “He wanted to see everything, he wanted to do everything. He loved people and was always the guy who was there to help people. And he didn’t do it to get acknowledgement; he did it because that’s what he wanted to do.”

Post-diagnosis, the assistance he offered was more specific. To raise awareness about ALS, and funds for the nonprofit Compassionate Care ALS of Falmouth, he traveled across the country by motorcycle, beginning in Key West, Fla.

For 26 days, riding hundreds of miles at a clip, he breezed through the beauty of New Mexico and the heat of Southern California. He took in the views of the Pacific Northwest coast and rolled into British Columbia before hanging a right and dipping into Montana for the trip east through Toledo, Ohio, Albany, N.Y., and on toward Maine.


In blogs he wrote for that trip and another across Canada, it is clear he never was at a loss for companionship.

“I just think he didn’t like being alone, so wherever he went, he met people,” his wife said. “And what people told me was, when you met Doug, you ended up being his friend for life.”

The youngest of four children, Douglas H. Oakley grew up in Weymouth and graduated in 1980 from Weymouth South High School.

Since adolescence he wanted to be a chef, so his mother persuaded Weymouth school officials to let him take home economics.

“Somebody said just the other day that one of the things they remembered about him was that he could walk into a kitchen with a bag of groceries and half an hour later there would be an incredible meal on the table,” his sister said.

After graduating from Johnson and Wales University with a culinary arts degree, he worked for a time at a hotel in Switzerland, but missed home. “He would go down to the train station and listen for people speaking English and join their conversation,” his sister said.

Returning to the United States, he was in food service at Melrose-Wakefield Hospital and at UMass Memorial Medical Center before switching to sales to spend less time indoors, working first for the Otis Spunkmeyer cookie company. That led to a sales job with Pfizer, selling products such as Dentyne gum and Chiclets. Then he changed careers again and brokered mortgages at Salem Five Bank in Plymouth.


He met Patty Weldon on a blind date and they married in 1990.

At his wake, she recalled, “every person who came through the line said, ‘He always made you smile.’ Even if you were having a bad day, he made you feel like, ‘You know, it’s not that bad. You’re here for a reason and you matter.’ ”

A service has been held for Mr. Oakley, who in addition to his wife and sister leaves his parents, Donald and Bonalyn (Smart) Oakley of Rockland; and two brothers, Terry of Gaithersburg, Md., and Trent of Abington.

While planning his funeral, Mr. Oakley didn’t want sorrow to prevail. “I want to do something that will make them laugh,” he told his wife.

One day before he needed a wheelchair, he told her to meet him at his cemetery plot. “Bring the Flip Cam,” he said, and once there, he asked her to record him dancing on his grave in his trademark minimalist choreography.

“The one thing the diagnosis has not changed is my ability to dance. I still have both moves,” he said in the video interview, smiling and jutting his head slightly left and then right, a fair approximation of precisely how much he moved while dancing before he was in a wheelchair.

At the reception after the funeral Mass, his family played the second video that he and his wife recorded at the cemetery, which included a montage of photos from his life and ended with Mr. Oakley atop his grave, dancing in the face of ALS.


“You know what? Everyone laughed, and he got what he wanted,” his wife said. “People laughed at his funeral.”

There was, of course, a message in the mirth.

“Luckily for me, anytime I had the chance to sit it out or dance, I danced,” Mr. Oakley said, “and I had a lot of fun doing it.”

Bryan Marquard can be reached at bmarquard@globe.com.