Rare brain disorder turns Chicago couple’s world upside down
December 2021
Editor’s Note: The following story was written jointly, by Pete Odon and his wife Nancy. Married 39 years, these Chicago-area parents of three grown children were thrust into a perplexing medical nightmare about six years ago, when Pete began inexplicably struggling with walking, balance, and uncontrollable body movements. His condition was finally diagnosed in 2017 as Progressive Supranuclear Palsy (PSP), a rare, incurable brain disorder. 67-year-old Pete continues to fight it, but was nonetheless forced to begin hospice care this past month. The Odons are sharing their journey with The Reporters Inc. in hopes of bringing more, and much-needed attention to this relentless disease.
BY PETE AND NANCY ODON
Pete Odon, promoting a CurePSP fundraiser in 2018. Before being diagnosed with Progressive Supranuclear Palsy in 2017, Pete worked for 40 years as a television news producer.
Chances are good that you’ve never heard of PSP. We hadn’t either. But now, those three letters have turned our so-called “golden years” into an uphill battle with a rare terminal disease that has no cure.
Pete had just left his 40-year career in Chicago television news production with an earlier than expected retirement in the fall of 2014 at age 60. He began having difficulty keeping up with the fast pace of technological changes. He took on a few part-time news writing jobs, but was let go again by the start of 2015. It may have been the television station bosses’ way of politely telling him he was no longer up to par with other writers.
At this point, Nancy started to become frustrated with what she perceived to be Pete’s apathetic attitude, both with work and the couple’s relationship. Conversations were minimal, and very few thoughts or concerns were shared between the two about their family or their future. Pete appeared to be, in Nancy’s estimation, secluding himself in his own little world.
Pete then took on a commission-only job, trying to get small businesses to accept interviews with insurance salespersons. He dropped off business cards at various businesses, hoping to strike up interest. Driving to these various locations, Pete began dinging his car’s side mirrors and bumpers—minor mishaps, but completely out of character. He’d quickly have them repaired before Nancy would notice.
As a producer with WFLD-TV in Chicago for two decades, part of Pete’s job involved supervising the work of news writers like Naomi Velasquez and Tom Smith. A year after this photo was taken in 2013, Pete took early retirement at the age of 60.
However, Nancy soon realized that when driving with Pete, his once-careful, behind-the-wheel habits were diminished. She noticed that he’d veer too much to the right, or the left, and passing motorists would be angrily blowing their horns at him. Again, totally out of character. This led Nancy to insist that she drive whenever they were in the car together.
Eventually, Pete would only make phone calls to businesses for the insurance company, reading from a script. He found that he started to need it, in order to remember what to say. At the same time, his increasing forgetfulness spread to other areas of his life, like missing bill payments or luncheon dates with friends, failing to recall conversations from hours prior, or losing his keys. Nancy feared this memory decline was the beginning stages of dementia.
And then, there was an outing with friends the couple hadn’t seen in many months. The following day, one of them reached out to Nancy, asking if Pete was OK. The friend noticed changes in Pete’s demeanor; for example, as he sat with the group, the friend sensed that Pete seemed unable to engage in conversation as he had in the past, and that his responses, if any, were “off.” Pete would make comments about a subject the group had finished discussing many minutes earlier. And a few times, he argued about seemingly unimportant matters.
Although Nancy had noticed this behavior herself, she’d dismissed it. Having friends bring it to her attention, however, was alarming.
Pete went to his primary care doctor for a check-up, but the doctor concluded there was no reason for concern. He told Pete his problems were typical of “old age.” Yet by 2016, the alarm bells were ringing loudly. Pete started losing his balance and would sometimes even stumble out of his regular seat on the couch while getting up, or as he was getting out of the car.
Nancy created a detailed list of Pete’s symptoms and the two returned to his primary care physician. This time, the doctor recommended Pete see a neurologist. After Pete underwent a lengthy, three-hour psychological assessment, the Odons were first told Pete showed no cognitive impairment and still had “superior memory abilities.” This, despite Pete’s own insistent concerns about his memory loss.
The doctors then ordered an MRI which, disturbingly, showed “loss of cerebral mass.” Pete also demonstrated impaired hand dexterity, a condition in which his right hand no longer functioned as easily as his left. The doctor also took note of Pete’s slow gait and reduced arm movements while walking.
As a result of the extensive testing, Pete was diagnosed with Parkinson’s Disease in October of 2016. As difficult as this was to hear, the Odons also felt a bit of relief, hoping that his health issues might now be effectively treated. The neurologist suggested Pete either start physical therapy or begin taking a Parkinson’s Disease medication for symptoms. Pete chose the physical therapy, working on his balance and learning how to, once again, properly stand from a sitting position.
Pete also chose to get a second opinion from another Parkinson’s Disease specialist and, in February 2017, that neurologist made a different conclusion. She diagnosed Pete with something the Odons had never heard of: Progressive Supranuclear Palsy (PSP). It’s a disorder that results from the deterioration of cells in areas of one’s brain that control body movement, coordination, thinking, and other important functions.
Pete’s lack of vertical eye movement was a major symptom of PSP. He’d begun having difficulty aiming his eyes properly. PSP patients have particular difficulty looking downward, or experience blurring and double vision. This difficulty with focusing the eyes can cause patients to trip on stairs and curbs, spill food, or appear disinterested in conversation because of poor eye contact.
Pete’s continuing problems with balance was another major symptom. A characteristic sign of PSP is a tendency to fall backward while walking.
According to the Mayo Clinic, “additional signs and symptoms of Progressive Supranuclear Palsy vary and may mimic those of Parkinson’s disease and dementia.”
They may include:
● Stiffness and awkward movements
● Problems with speech and swallowing
● Sensitivity to light
● Sleep disturbances
● Loss of interest in pleasurable activities
● Impulsive behavior, possibly including laughing or crying for no reason
● Difficulties with memory, reasoning, problem-solving and decision-making
● Depression and anxiety
● A surprised or frightened facial expression, resulting from rigid facial muscles
Pete’s initial thinking was, “What a relief it is that we finally found the right diagnosis!” But as Nancy searched the internet for information, she found nothing encouraging. There’s no cure for PSP, so treatment focuses on managing the signs and symptoms. The Odons’ hope for a relaxing journey into retirement had now been re-routed down a very different and frighteningly unknown fork in the road.
After his PSP diagnosis, and after failing two behind-the-wheel tests given by his occupational therapists, Pete was ordered not to drive. This was yet another devastating blow. Pete felt as if he was losing his independence and was frustrated by always having to rely on someone else to drop him off, or pick him up. Although he’d been named “Top Volunteer” at Northwest Community Hospital (in his suburb of Arlington Heights, Illinois) in 2017, he had to quit this role he loved when he started stumbling while transporting patients. During his last mishap, he fumbled with a wheelchair while transferring a patient to a car; this resulted in a bad fall and a trip to the emergency room to attend to a large cut on Pete’s forehead.
In 2017, Pete was named Volunteer of the Year by Northwest Community Hospital in Arlington Heights, Illinois.
PSP wasn’t recognized as a distinct disease until 1963, when three physicians first identified it. (It’s also referred to as Steele-Richardson-Olszewski Syndrome.) According to Dr. Lawrence Golbe, a professor of neurology at Rutgers Medical School and a Board Member of the organization CurePSP, five to six people per 100,000 are living with PSP. The condition typically affects people around the age of 60; it’s virtually never seen in individuals under 40. Many medical professionals still aren’t familiar at all with this rare disease and its symptoms.
The cause of PSP isn’t known. A genetic link isn’t clear; it rarely afflicts multiple family members and most people with PSP haven’t inherited the disorder.
After researching Progressive Supranuclear Palsy, the Odons discovered CurePSP. They attended the 2017 CurePSP National Conference in Chicago, meeting experts and other PSP patients, and learned more about the disease. Still, Pete said at the time, “I got a glimpse of my future when I went there. When I saw all these people in wheelchairs, or with canes and walkers, I knew the prognosis was bleak. I’m faring the best I can. I hope there’s a cure, but I don’t think I’m going to see it.”
The Odons found a Chicago-area CurePSP support group near them, and they attended it regularly until the COVID pandemic isolated everyone. Now, they attend virtual meetings, both local and national, and they say the sessions give them hope and direction.
Pete visits with some of his former WFLD-TV co-workers in 2017 (left to right) Brian Carlson, Frank Accardi, Chris Mahnke, Anne Kavanagh, Roy Santoro, Jill Dicarlo, Nancy Langfels, and John Dempsey.
By the spring of 2018, Pete was no longer comfortable walking short distances by himself, as he began falling almost daily. Nancy became uneasy leaving Pete alone, prompting her to take early retirement at age 60; she’d been a grade school teacher for 25 years. This gave the Odons the opportunity to search out new physical, occupational and speech therapies, and partake in a boxing support group specifically designed to help with balance, strength and self-esteem. They also found time to travel while Pete was still mobile.
The Odons took an Alaskan cruise in June of 2018 to celebrate their 35th wedding anniversary, and then a vacation to Fort Myers, Florida in January 2019. Preparing for the trips, including making sure they had handicap accessible rooms and equipment available, was a new and difficult ordeal. Yet the time they spent together traveling brought them new and wonderful memories. Nancy says the cliche is true: “Life is short and so we have to live each day to its fullest.”
Nancy began tirelessly attending to all of Pete’s needs: scheduling doctor and therapy appointments and driving Pete to them, planning events so the couple could socialize with others in order to keep Pete optimistic, working out with him in order to maintain his muscle tone and movement, and overseeing their decision to sell their house of 27 years and purchase a one-story condo to eliminate stairs.
Yet by 2020, Pete had lost nearly all sense of balance. Because of his fixed eye movements, it became even more difficult for him to get in and out of chairs, and climb stairs. He was rushed to the ER two more times, for cuts to his head, broken facial bones, and a broken toe. It became nearly impossible for him to discern what was being said in a group conversation, or for him to get his own thoughts across.
Nancy also worried more about Pete’s increasing problems with swallowing, fearing he might choke or inhale liquid into his airway (aspiration). Many PSP patients die from aspiration pneumonia.
Other complications included exhaustion, insomnia, and apathy. Pete began losing all interest in financial matters or planning for the future.
In 2021, the situation worsened further.
“In the past year,” Nancy explains, “I noticed a great decline with Pete’s movement. Six months ago he could walk about three blocks using his walker. Then he could only walk inside our condo with his walker, a gait belt, and much assistance. And that was on a good day.”
Nancy and Pete at a family wedding in Chicago, January 2020.
Today, Pete is confined to a wheelchair.
“His communication has diminished. He seldom speaks,” Nancy says, “and if he does, it’s quiet, slurred, and often inaudible. I can barely understand him. I need to ask him to speak one word at a time. To comprehend his thoughts might take 10 minutes.”
After two sets of physical therapy sessions this past summer led to little or no progress, Pete’s neurologist suggested that the Odons think about hospice care as their next step. As heartbreaking as the suggestion was, the Odons agreed. Nancy explains, “In October, we transitioned from palliative to hospice care for support, not knowing how long Pete will continue fighting this disease. It could be years, or it could be just months.”
Hospice care has supported the Odons with medical, nursing and social services, an aide, durable medical equipment, medications for pain and comfort, and spiritual support. “We’re glad we put this in place sooner than later,” Nancy says. They’ve been able to remain in their condo together.
Still, Pete’s decline continues. “His vision is very poor now,” Nancy explains. “He can no longer read the newspaper. Viewing the television is difficult. Dialing a phone number and using the computer are impossible. He needs total assistance for nearly all daily activities, like going to the bathroom, daily hygiene, dressing, and transferring between chairs and bed.”
Pete’s diminished lack of coordination and increased rigidity make it necessary for assistance eating as well. “As a result, we deal with choking and aspiration during meals,” Nancy says. “Most of his foods are chopped or pureed, and all liquids are thickened to lessen the chances of aspiration.” Pete has chosen not to have a feeding tube, knowing it may only prolong the disease.
Not all is bleak, however. “During this journey, we’ve been blessed with our first grandchild who brings great joy as we watch her grow,” Nancy says. “Our two sons live in the area and are of great support, making sure our home is handicap accessible, assisting with caregiving duties, and helping with medical questions. Our youngest son is a nurse practitioner so that comes in handy! Our daughter lives out of state, but she’s helped as well by creating simplified football and baseball pools with family and friends so Pete can continue engaging with a hobby he enjoys.”
Nancy has set up a website through Lotsa Helping Hands that provides family and friends with information as to how they can volunteer their time to visit and help out. The Odons have also helped carry out the motto of CurePSP, “Because Hope Matters,” by organizing three Chicago-area ice cream social fundraisers—including a virtual one during the pandemic. They raised more than $40,000 for the CurePSP Foundation.
“This year, we also created a birthday fundraiser for Pete through Facebook raising more than $13,000 toward CurePSP,” Nancy adds. “Our main goal has been to bring about awareness to this repulsive disease, while supporting research funding for a cure. Although we can’t change the diagnosis, we can choose to make a difference.”
Nancy continues, “With faith, we chose to live each day as a gift, see each person we encounter as a gift, and treat each moment of happiness as a gift. Our hope is to someday soon find a cure so others will live a better life.”
Pete and Nancy Odon can be reached at Nancy.Odon@gmail.com. If you’d like to support the search for a cure, or learn more about Progressive Supranuclear Palsy (PSP) and other neurodegenerative diseases, contact CurePSP at www.curepsp.org.
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