{"id":19659,"date":"2018-11-27T11:52:12","date_gmt":"2018-11-27T18:52:12","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=19659"},"modified":"2026-04-02T15:29:20","modified_gmt":"2026-04-02T21:29:20","slug":"a-brain-disease-that-betrays-the-eyes","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/a-brain-disease-that-betrays-the-eyes\/","title":{"rendered":"A brain disease that betrays the eyes"},"content":{"rendered":"
<\/div>

\u201cSeeing is believing,\u201d an old saying advises. Those words no longer apply for Bob Yetz.<\/p>\n

\"Yetz
Yetz recently enjoyed a trip to Italy. Photo courtesy Barbara Hubbard.<\/figcaption><\/figure>\n

Yetz, 71, suffers from a rare form of Alzheimer\u2019s disease called posterior cortical atrophy, or PCA. As with other Alzheimer\u2019s patients, Yetz\u2019s brain tissue is deteriorating. But the damage is progressing primarily in the folds of gray tissue \u2013 the cortex \u2013 at the back of his brain. This area is responsible for processing visual information sent from the eyes to the brain.<\/p>\n

The degeneration of the posterior cortex means that people with PCA have generally healthy eyes, but see a very different world than most of us, said Dr. Victoria Pelak<\/a>, a neuro-ophthalmologist and specialist in PCA who sees Yetz and other PCA patients at the Sue Anschutz-Rodgers Eye Center on the Anschutz Medical Campus<\/a>. For example, they may be unable to see objects or people directly in front of them or struggle to read because lines of text run together.<\/p>\n

\"\"
Yetz during a visit with Dr. Pelak. (Photo courtesy Helen Gray).<\/figcaption><\/figure>\n

\u201cThe posterior cortex takes in all the information coming in through the eyes and then parses it out to different areas of the brain that help us understand spatial relationships, how fast something is moving and what we\u2019re looking at, like a scene, a face or a color,\u201d Pelak said. \u201cThe problem with PCA is that the brain can\u2019t use the good information coming to it from the eyes.\u201d<\/p>\n

Difficult to diagnose<\/strong><\/h3>\n

It is also difficult to get precise information about PCA, Pelak said. She noted that of the estimated 5.7 million people<\/a> in the United States diagnosed with Alzheimer\u2019s disease, roughly one-quarter don\u2019t present initially with memory loss. Of these \u201catypical\u201d forms of the disease, language loss is the most common symptom, she added, primarily because it is easier to recognize than the vision degeneration caused by PCA.<\/p>\n

\u201cWe have no tests for a sensitive, early diagnosis,\u201d Pelak said.<\/p>\n

Yetz, who lives in Lone Tree with his care partner, Barbara Hubbard, relied on his eyes for 27 years at Lockheed Martin in Sunnyvale, California, first as a machinist and toolmaker and later as a cost scheduler. It was during his work in the latter job that Yetz said he noticed his visual acuity slipping.<\/p>\n

\"gold
Yetz\u2019s gold-colored phone helps him to see it against a black background.<\/figcaption><\/figure>\n

\u201cI started to struggle with figures,\u201d he said. At home, simple chores like balancing the checkbook posed problems. \u201cThe numbers weren\u2019t clear; the small print was fuzzy. I wasn\u2019t able to add the numbers, even with a calculator. I had no idea what was going on.\u201d<\/p>\n

Early danger signs<\/strong><\/h3>\n

Yetz retired in 2010 and moved to Reno, Nevada. But the warning signs he\u2019d noticed earlier became a blaring alarm when he got behind the wheel of his car. Distinguishing the colors on stoplights became a challenge and his then-wife warned him he wasn\u2019t seeing signs and other landmarks he should have. After a frightening narrow miss with a bicyclist who escaped his<\/p>\n

attention, Yetz voluntarily gave up his driver\u2019s license.<\/p>\n

These signs of cognitive deterioration, combined with neurologic and neuro-psychological testing, pointed to Alzheimer\u2019s disease. But it would not be until 2014 that PET and CT scans in Reno confirmed the diagnosis. The presence of PCA remained in the shadows until 2018 after extensive testing by Thomas Wodushek, a PhD neuropsychologist with the Department of Neurosurgery at the University of Colorado School of Medicine, and a subsequent examination by CU neurologist Dr. Brice McConnel<\/a>l. McConnell, in turn, referred Yetz to Pelak, who identified the PCA.<\/p>\n

\"Pelak
UCHealth neuro-ophthalmologist Dr. Victoria Pelak diagnosed Yetz\u2019s PCA. (Photo courtesy Helen Gray.)<\/figcaption><\/figure>\n

On the surface, it was hardly a cheering diagnosis. There is no cure for PCA, and Pelak noted that it can also progress to \u201cmore typical\u201d Alzheimer\u2019s disease, with its attendant memory loss and progressive dementia. A recent visual examination showed that Yetz had lost perception in the left half of both eyes. Hubbard notices his problems seeing things that to others are in plain sight, and he struggles to find objects placed on a background with a similar color.<\/p>\n

Finding meaning<\/strong><\/h3>\n

But Yetz, an affable and thoughtful man, prefers to concentrate on the positives in his life. After his 2014 Alzheimer\u2019s diagnosis, he became a staunch advocate for research and education with the Reno chapter of the Alzheimer\u2019s Association. The work included trips to Washington D.C. for talks to members of Congress in support of funding for research into the disease. He\u2019s offered to lend similar support to Pelak and has provided an endowment for PCA research. He will also donate his brain for research after his death.<\/p>\n

\u201cYou can sit back and feel sorry for yourself, but if you dwell in that mode, it\u2019s worse,\u201d Yetz said. \u201cNever once did I have a thought of, \u2018Oh, poor me.\u2019 I knew I could do something to be helpful.\u201d<\/p>\n

\"She
These words, which he saw several years ago, continue to inspire Yetz. Photo courtesy Bob Yetz.<\/figcaption><\/figure>\n

Helping hand<\/strong><\/h3>\n

He does so with the full support of Hubbard. They met about 15 years ago at Lockheed Martin, where she worked in software configuration management. They shared a house as roommates a couple of times \u2013 \u201claughing a lot, playing darts,\u201d as Hubbard recalled \u2013 before losing touch for a time after Yetz\u2019s health travails set in.<\/p>\n

They eventually reconnected and Yetz stopped in Denver to see Hubbard on his way to North Carolina, where he planned to live in the home of a nephew. When that didn\u2019t work out, he asked Hubbard about renewing the roommate arrangement, but under far different circumstances than before.<\/p>\n

She gave him a straightforward answer: \u201cI\u2019ll be your care partner.\u201d<\/p>\n

It might have been fate, Hubbard added, but she also makes the decision sound less like a life change than a continuation of good works.<\/p>\n

\u201cI\u2019m from a family of public servants,\u201d she said. \u201cIt runs in our blood.\u201d She said she learned a powerful lesson about the value of giving back while caring for her late mother. Hubbard suffered at the time from a severe lung infection, and her mother\u2019s retirement home friends pitched in to help her.<\/p>\n

\u201cThey adopted me,\u201d said Hubbard who was, in turn, inspired to reach out to and visit her mother\u2019s friends. \u201cHer friends became my friends,\u201d she said.<\/p>\n

Hubbard readily admits that she didn\u2019t fully grasp what was in store for her when Yetz joined her a year ago. But she said she concentrates on shortening his frustration when he can\u2019t find things and taking time out when he repeats things several times. \u201cI try to find a solution,\u201d Hubbard said. She was also instrumental in getting Yetz care at UCHealth, a role that is apparent as she scrolls through her phone to confirm the dates of the appointments that led to his PCA diagnosis.<\/p>\n

\"Barb
Hubbard enjoyed the trip to Italy with Yetz and helped to keep him safe. Photo courtesy Barbara Hubbard.<\/figcaption><\/figure>\n

Just as importantly, Hubbard is a friend and companion for Yetz. In late September they took a 15-day tour of Italy that Hubbard commemorated with several hundred photos of landmarks and artifacts in places like Pompei. Yetz used a walking cane to help him get around while Hubbard kept a watchful eye on him in unfamiliar surroundings \u2013 the only mishap being his trip over a raised light dome in the sidewalk that split his lip without dampening his spirits.<\/p>\n

\u201cI was able to go to Italy and enjoy it,\u201d Yetz said. \u201cYou shouldn\u2019t change your life [because of your condition]. You should do as much as you can. Barbara\u2019s help has been super important. Being alone would be a struggle.\u201d<\/p>\n

Caregiver support<\/strong><\/h3>\n

A PCA diagnosis can be isolating for both patients and caregivers. Pelak leads the bimonthly Colorado Posterior Cortical Atrophy Support Group<\/a>, the only one of its kind in Colorado, and to her knowledge, in the country, that is devoted solely to in-person meetings with PCA patients and caregivers. The group underscores the point that as difficult as the disease is for those who suffer it, their families and loved ones also need support to deal with the stress of providing care, Pelak said. She noted that many PCA patients lose their independence at a relatively early age and therefore require long hours of attention to keep them safe.<\/p>\n

\"Bob
Hubbard\u2019s companionship helps Yetz deal with his posterior cortical atrophy, a form of Alzheimer\u2019s disease that deteriorates his vision.<\/figcaption><\/figure>\n

\u201cThe role of caregivers is crucial,\u201d Pelak said. \u201cThe better we support caregivers, the better the patient does in terms of quality of life and living longer.\u201d She added that technology, such as audiobooks and voice-controlled smartphone apps, can help keep people with PCA engaged without taxing their vision and cognition.<\/p>\n

In addition to her core mission of assisting individuals like Yetz, Pelak said she has a twofold mission in drawing attention to PCA: to raise awareness of the symptoms of the disease among patients and providers, and to spur additional research. She led a 2017 study<\/a> that provided online surveys to PCA patients and caregivers and to physicians caring for them. The goal was to gather information about the clinical backgrounds of patients, the burdens faced by caregivers, and insights from physicians about the kinds of care they provide.<\/p>\n

\u201cBy using social media to explore patient and caregiver experiences and physician experiences with PCA, we can gather information from people all over the country and the world,\u201d Pelak said. \u201cThis allows us to hear themes that lead to important research questions that we might not have thought to explore. That is what happened with our study. Thus, we heard themes that will, and did, lead to research questions.\u201d<\/p>\n

\"Red
Yetz has trouble seeing an item like his glasses placed against a similarly colored background.<\/figcaption><\/figure>\n

Pelak also was co-author of a paper<\/a> that established, through a consensus of providers, criteria for classifying PCA \u2013 another key to standardizing research findings with \u201ccommon principles and language,\u201d thereby potentially increasing the number of people diagnosed with the disease. As the study concludes, a standard \u201cframework and terminology\u201d for classifying PCA could help specialists interpret research data conducted in many settings, from behavioral studies to drug trials, and \u201cprovide a foundation for future collaborative work.\u201d<\/p>\n

That work will have the best chance of success with the backing of people like Bob Yetz, Pelak added. \u201cIf patients are aware of PCA, they will always be creating and teaching others about our goals,\u201d she said.<\/p>\n

For Yetz, the disease that has robbed him of so much also has given him something of great value. He points to a picture of a sign he saw during his time in Reno. It reads, \u201cYou will recognize your own path when you come upon it. Because you will suddenly have all the energy and imagination you need.\u201d<\/p>\n

The words blazed the trail for what is now the direction of Yetz\u2019s life. \u201cIt told me I can help people with and without the disease. I found my purpose in late life.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cSeeing is believing,\u201d an old saying advises. Those words no longer apply for Bob Yetz. Yetz, 71, suffers from a rare form of Alzheimer\u2019s disease called posterior cortical atrophy, or PCA. As with other Alzheimer\u2019s patients, Yetz\u2019s brain tissue is deteriorating. But the damage is progressing primarily in the folds of gray tissue \u2013 the […]<\/p>\n","protected":false},"author":2143,"featured_media":19666,"comment_status":"closed","ping_status":"closed","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[185,570,3835,848,184,3834,3631,3830],"class_list":["post-19659","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-alzheimers-care","tag-brain","tag-brice-mcconnell","tag-eye-care-ophthalmology","tag-neurology","tag-thomas-wodushek","tag-uchealth-sue-anschutz-rodgers-eye-center","tag-victoria-pelak"],"acf":[],"yoast_head":"\nPosterior cortical atrophy: A brain disease that betrays the eyes - 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