A vision to support education and research
Bob Yetz wants you to know he doesn’t feel sorry for himself. But he wants you to know what’s happening to him and others like him.
Bob struggles to discern colors from one another. He often can’t see things right in front of him. Words on the page blur together. Bob likes to walk and has to be careful not to trip and fall, especially on uneven surfaces like stairs and curbs. He can no longer drive a car.
Bob’s eyes are healthy. But a rare form of Alzheimer’s disease called posterior cortical atrophy, or PCA, is robbing him of the life he once had. As PCA causes the back part of his brain to deteriorate, Bob loses more and more of his ability to process the visual information sent from his eyes to his brain.
Bob doesn’t feel sorry for himself. He only wants to share what’s happening to him and others like him to help raise awareness.
And living with PCA isn’t holding Bob back. Last year, Bob and his care partner Barbara Hubbard took a 15-day trip to Italy. This Christmas, Bob went indoor skydiving. And last year, he established a planned gift at CU Anschutz.
Distributions from the endowment Bob created through his planned gift will provide support for the research and care in PCA in the Division of Neuro-Ophthalmology directed by Victoria Pelak, MD, at CU Anschutz.
After his Alzheimer’s diagnosis in 2014, Bob became a passionate advocate for research and education in Alzheimer’s disease.
“I’ve always wanted to help, and part of that is dollars. When I go into assisted living, and that will eventually happen, any money that’s left over will go to research,” says Bob, 71, who is now retired from Lockheed Martin. “We made this decision as a team. We talked about different ways I could help. And I signed up that day.”
It wasn’t until he moved to Colorado from Nevada in 2017, when he went through extensive testing by Thomas Wodushek, a Ph.D. neuropsychologist with the Department of Neurosurgery at the CU School of Medicine, and a subsequent examination by CU neurologist Brice McConnell, MD. McConnell, in turn, referred Yetz to Pelak, who identified the PCA.
“When I mentioned the vison abnormalities Bob was having—not seeing things in front of him, saying how things looked funny—they suspected PCA, and we were sent down the chain of such great doctors,” Barbara says. “Bob’s in a really good spot at CU.”
In addition to pursuing research and clinical care in PCA, Pelak leads a bi-monthly support group, the only one of its kind in Colorado, and possibly the only in the country, that is devoted solely to in-person meetings with PCA patients and caregivers. That sense of community and belonging solidified Bob’s intention to support Pelak’s work in PCA all the more so. Bob has also begun co-leading these support groups occasionally.
Misdiagnosis of PCA is common, not only because it is rare and its symptoms unusual, but patients frequently seek the opinion of an ophthalmologist, who may note normal eye examinations. Some studies have found that about 5 percent of people diagnosed with Alzheimer’s disease have PCA. However, because PCA often goes unrecognized, the true percentage may be higher.
Bob likes that he and Pelak share the same mission: to raise awareness about the disease and to find a cure. In addition to making a planned gift, Bob also plans to donate his brain for PCA research after his death.
“It starts with dollars. If you don’t have dollars, you can’t do research and be successful,” Bob says. “When you have these kinds of conversations, it’s personal. Not just from a doctor’s perspective but from a humanity kind of perspective. I just want to help find a cure. And it’s not going to be any time soon. It’s going to take time. But you’ve got to have the support. I have the need to do that while I still can.”
You can read more about Bob’s journey with PCA here.