Brain disease motivates Arlington Heights couple to raise money to find a cure
A year after retiring as a Chicago TV news producer, Pete Odon started having balance problems and banging into objects for no reason.
When friends asked why he also suddenly was not talking much, Odon and his wife, Nancy, of Arlington Heights saw his primary care physician and a community neurologist, who thought he had Parkinson's disease.
The neurologist referred Odon to a movement disorders specialist at a Chicago academic medical center in February 2017. The diagnosis he received was worse than Parkinson's disease -- and far less common.
Odon has a brain disease that few people have heard of: progressive supranuclear palsy, or PSP. Although an estimated 50,000 Americans receive a new diagnosis of Parkinson's disease each year, PSP affects only about 20,000 Americans, the National Institutes of Health reports.
PSP affects movement, control of walking and balance, speech, swallowing, vision, mood and behavior, and often thinking.
No effective treatment or cure exists for this neurodegeneration, according to New York-based CurePSP, a nonprofit foundation for prime-of-life fatal brain disorders that frequently strike during a person's most productive and rewarding years.
For Odon, the progressive worsening of PSP meant he soon was falling often and could not drive anymore or volunteer at their local hospital. He no longer was able to safely do most activities of daily living on his own and now walks with a walker, said Nancy Odon, who retired last year primarily to stay home with Pete.
"Pete recently fell down the stairs at home and spent several days in the hospital, so we now are looking for a home without stairs," she said. "This is a terrible disease that affects the whole family, and whenever we tell someone Pete has PSP, we hear, 'What? I've never heard of that.'"
Pete Odon said his way of coping with the disease is to stay positive.
"There's not a whole lot of humor in this disease," he said, "but my advice is to take the opportunity to laugh, if you can. Try to do things on your own for as long as possible. Make it easy for your caretakers."
The Odons also joined a Glenview-based support group for people with PSP and their family members, which meets the first Saturday of each month at The Abington of Glenview. They found out their story is similar to that of other group members.
A delay in diagnosis, medication that does not help symptoms greatly or for long, lack of awareness of the disease among the medical community, and frustration with a disease that robs them of so much are all common comments from group members, they noted.
The support group, the only in-person CurePSP support group in Illinois,dedicated to PSP and related brain diseases, decided to do something to raise public and health care givers' awareness: hold a benefit for CurePSP, Nancy Odon said.
On June 23 she will chair the group's Second Annual Sundaes to Stop PSP ice cream social, with a goal of raising $15,000 for CurePSP research and patient/family support. The event, which takes place at The Abington of Glenview, 3901 Glenview Road, from 2 to 4 p.m., features Homer's gourmet ice cream and other refreshments, live music and children's games.
In addition, Jaclyn Zendrian of CurePSP and Danielle Marino, a social worker with Northwestern Medicine's Parkinson Disease and Movement Disorders Center, Chicago, will speak about PSP.
Odon said she expects the ice cream social to attract more than the 125 people who attended last year's inaugural fundraiser, which raised approximately $9,000 for CurePSP. The national organization has funded more than 190 research studies regarding PSP and related diseases, corticobasal degeneration and multiple system atrophy.
"We hope that people from the community will want to support this fun event that will help people who are seriously ill, but especially that people will hear about PSP and know what it is," Odon said.
"And," said her husband, "we keep hoping for a cure."