OCEANSIDE — Joe Potocny doesn’t mince words. In fact, his language can get quite salty at times. He and his wife, Lynn, say he was this way long before he was diagnosed with Alzheimer’s disease at 61.
If Potocny looks familiar, it’s because he was profiled last year on the HBO documentary, “The Alzheimer’s Project.”
Today, Potocny, an Oceanside resident, is angry about what he perceives is apathy toward the disease, and is on a mission to spread the word that it can strike any one at any age.
“People say it’s an old people’s disease,” he said. “Bulls—! I have known a number of people with it who are younger than me. One man was diagnosed at 23 and died at 27.”
He contrasts fundraising efforts and media attention on Alzheimer’s with that given to breast cancer.
“You will never see a walk for Alzheimer’s,” he said. “But you’ll see it for breast cancer. I’m not against helping people with breast cancer. What pisses me off is that we don’t have a voice. We have to stop people from dying.”
Potocny takes aim specifically at the Baby Boomer generation for not doing more to find a cure for the disease.
“We know at least half of them are going to join us and I can hardly wait,” he said. “As mean as it sounds, I can hardly wait because they are the biggest problem because they don’t vote. And how many well-known people do you hear say, ‘My relative died of Alzheimer’s?’ We need to do something.”
Specifically, Potocny is disappointed that California First Lady Maria Shriver hasn’t done more to put the spotlight on her father, Sargent Shriver, who was diagnosed with Alzheimer’s in 2003.
“She helped get the HBO documentary together,” he said. “But if I had a father who started the Peace Corps, and has done all he has done, I would make it so much more public with commercials so people could see what Alzheimer’s does.”
Potocny took matters in his own hands after being diagnosed with Alzheimer’s in 2006 by starting a blog at living-with-alzhiemers.blogspot.com.
“We thought it would be a good idea to write things down about how Joe was feeling,” Lynn said. “Then we decided it was a good idea to put it in a blog whether anyone reads it or not. He thought of shutting it down, then people started writing posts.”
Although the blog has existed for four years, Potocny only installed the counter two years ago. To date, there have been almost 47,000 hits from more than 60 countries including the United States, China, France, Latvia and Argentina. There is a large following from Russia and Canada including caregivers, friends and medical professionals.
“I have four nursing facilities in Canada who use my blog for teaching,” Potocny adds.
In 2008 Beckey Bright posted a story about Potocny in her column “Blog Watch” on the Wall Street Journal Online. She suggested that the best insight into Alzheimer’s disease comes from those who “suffer in silence” from the disease.
“I didn’t know anything about her piece until I opened my e-mail and started receiving comments,” he said.
Positive response to his blog has fueled a passion in Potocny to continue. Lynn Potocny encourages him by hanging a Post-It note next to his computer as a reminder.
“He tries to write a post every few days, but sometimes is only able to do it once a week,” she said. “It depends what he has to say. He’ll sit and forget and say, ‘What was I doing here?’ and get up and walk away.”
This is the first in a two-part series, which will be continued next issue. The second article will discuss early symptoms that led to Joe Potocny’s descent into Alzheimer’s disease.