Sid Yudowitch planned to become a motivational speaker when he retired. He already gave speeches as a member of Toastmasters, the public speaking organization. At work, he was the guy who got calmer the harder things got.
Then his brain stopped working, or so it seemed. Doctors couldn’t explain why. Work seemed harder and took longer. The aspiring motivational speaker lost his motivation. He calls it “the dark days.”
“What I told people is ‘my brain’s broken,’” he said. “It just doesn’t work like it used to. I’m just not the same person I was before.”
For Yudowitch, now 60, getting diagnosed with early-onset Alzheimer’s disease last year began his path back to a life he recognized. The South Windsor man who spent a career in information technology set about reprogramming his brain, taking “mind aerobics” courses and relearning how to do things he once took for granted, like using a screwdriver.
Early-onset Alzheimer’s, which strikes people under 65, affects a small sliver of those with Alzheimer’s — about 200,000 out of an estimated 5.4 million people in the U.S. with Alzheimer’s. But those who have it face unique challenges, including difficulty in the workplace, insecurity about health insurance and the perception among even doctors that Alzheimer’s is a disease of the elderly. Yudowitch said his primary care doctor still doesn’t believe he could have it.
Since his diagnosis, which took more than four years to get, Yudowitch has gotten involved with the Alzheimer’s Association’s Connecticut Chapter, speaking to groups about living with the disease. It represents in part a new focus for the association, which has long offered courses and support groups for people who take care of loved ones with Alzheimer’s, but has only recently started focusing on efforts to give those with the disease a voice, too.
The association recognized that “If we’re encouraging people to get diagnosed earlier, then we need to give them programs,” said Carolyn DeRocco, senior director of programs and education for the Alzheimer’s Association’s Connecticut Chapter.
Yudowitch is perhaps a natural for the role. He’s addressed 3,000 people at a fundraising walk for Alzheimer’s. For a Toastmaster, he noted, that was the pinnacle of success. And although it hadn’t been long since he felt like he lost his “voice,” he spoke to the crowd without a struggle.
“I don’t really have a lot of nerves anymore,” he said. Then he added, with a laugh, “It’s just like, what else can you do to me?”
An elusive diagnosis
The problems began about five years ago. For the first year, Yudowitch managed to compensate. He worked as a project leader for IT programmers, supervising between three and five people, depending on the project. He’d take notes at meetings, then go back to his desk to find he couldn’t understand what the notes meant. He began asking follow-up questions and hearing from colleagues that he should have known something he didn’t.
“It wasn’t that the information was obscure or too complicated,” he said. “It was that I just couldn’t follow what was going on. And this happened over and over again.”
For the first time, he said, his projects would get done late, putting added pressure on his supervisor. Eventually, he was put on probation, and his company started the termination process. He was 57.
Yudowitch managed to avoid getting fired by taking a medical leave because of severe sleep apnea. But the process of getting long-term disability benefits required more tests and medical visits to get a diagnosis. His doctor concluded it was anxiety and depression, something he knew he didn’t have. When he was asked whether he felt hopeful about his future, Yudowitch said no.
“I didn’t know what was happening, and I didn’t know what the future was,” he explained.
A CT scan didn’t find anything. He saw a psychologist and he told her he just had a problem thinking. She said she wasn’t qualified to diagnose him with Alzheimer’s.
But Yudowitch was ready for the diagnosis, and sought out a place that could tell him if he really had Alzheimer’s. He went to the UConn Health Center, where last April, four years after the symptoms began, it was confirmed that he had Alzheimer’s.
It was partly a relief. He wouldn’t have to keep going to doctors to get a diagnosis to justify his disability benefits. And he had a starting point for moving forward.
He didn’t expect the other part of his reaction.
“I knew that I had Alzheimer’s and there is no cure for Alzheimer’s. It just gets worse, it doesn’t get better,” he said. “It was a very emotional moment. I went and broke down and cried.”
Reprogramming the brain
After the diagnosis, Yudowitch began taking the drug Namenda, which can delay the progression of some symptoms. It helped clear what felt like a fog, he said.
But by that time, he’d already lost many skills. He once did plumbing, electrical work and carpentry projects, but now he didn’t have the geometric perception to use a screwdriver.
He had a new fix-it task: His brain.
“Being in computers, I understand how memory works in computers, so it was almost reprogramming my brain,” Yudowitch said. “You think a little different when you have Alzheimer’s, so you don’t do things the way you normally did before to get the same results.”
He spent the summer at his family’s campground in New Hampshire. He wanted to exercise, but struggled with balance, so he ordered a recumbent tricycle. It arrived put together wrong. “So I was forced to use my hands again and figure things out,” he said.
Over the summer, he relearned skills, and a new set of expectations. He learned not to beat himself up if something took five tries, to not sacrifice the good for the perfect. He began to get involved with the Alzheimer’s Association.
When he got back to Connecticut after the summer, he decided he’d need to keep busy, and found a “mind aerobics” course through the New England Cognitive Center, learning techniques and doing exercises.
By last October, after losing power in the Halloween-weekend snowstorm, he didn’t think twice about using a gas-powered chainsaw. He still trades stocks in his 401K and recently did his taxes. When he got confused, he used a number exercise from mind aerobics.
Things are different. He’s had to get used to not multitasking. He can read newspaper articles but won’t remember how they started by the time he gets to the end.
Staying in the game
Yudowitch said he doesn’t spend a lot of time thinking about what the future might bring.
He and his wife, who have grown twin sons, have made financial and caregiving plans. He credits the medication with slowing down the disease. “I’m really not getting better, but the medication compensates a lot for my condition,” he said.
He still has bad days, or what he calls “days off,” which he said feel like having a hangover all day. “You don’t really want to do anything. You just want to lay around and get through the day,” he said.
It’s a common problem among people with early-onset Alzheimer’s, said Patty O’Brian, north central regional director for the Alzheimer’s Association Connecticut Chapter. One of the first parts of the brain the disease affects is the part that tells people to get going, the part that motivates and initiates activity. “The brain just never kicks in,” she said.
But Yudowitch has what he calls a mantra of “staying in the game,” making sure he stays busy. If he’s having a bad day, he goes to the dog park and talks to people.
“If I can stay in the game for as long as I can, that takes the burden off my wife and my family and I have a good time,” he told an audience recently during a “Living with Alzheimer’s” presentation at Arden Courts, an assisted living facility in Farmington for people with memory loss. “I enjoy my life and there’s not a lot of people with Alzheimer’s that can say that every single day is a blessing.”
Then he added: “I’m kind of like a motivational speaker for Alzheimer’s.”