PSP is a disease of the brain, attacking six people in 100,000. PSP slowly kills off parts of the brain that relate to vision, swallowing, balance and speech. Because it occurs so infrequently, many physicians simply know nothing about it. That was Mom’s case. At first her vision went bad. She lost her ability to do crossword puzzles due to what she described as fuzzy eyesight. She lost her balance and tumbled frequently, seemingly without reason. She could not eat a meal without dropping half of it on the shelf formed by her amble bosom. Her weight skyrocketed as she became increasingly immobile. She also became incontinent, a fact I was sorrowfully to learn on a car trip from Florida to Nova Scotia. It was in Georgia that I pulled off the Interstate to find a drug store and buy her first package of adult diapers. She wore them for the rest of her life.
|New York: Grasslands School of Nursing grad, 1965|
|Mom and Dad. Forever young. (South Salem, N.Y.)|
As her habits began obviously to change, we scolded her for eating too fast, for not taking care of herself, for not exercising. Walk, Mom! Get out and do things, we urged. She said she couldn’t. We thought she was lazy, or depressed. We agonized when the phone rang, expecting the bad news from Sebring, Fla. of another mishap involving Mom, who was supposedly quite healthy.
Claiming that her lovely home had become too big for her to handle, she sold it and bought a tiny trailer in a seniors-only trailer park. She had the floors redone. The walls painted. She bought new kitchen appliances. But it was still a trailer, and we were mystified as to why she chose such a modest dwelling when she could afford so much more. Then I understood. I observed that when she walked from the living room to her bedroom she used the walls to keep her balance. Everywhere in that trailer she had a place to hold on to, to keep her on her feet.
What was wrong with her? I took her to eye doctors, five total, and not one could find a problem with her eyes. By then she was incapable of reading or writing. In the hospital, after a fall, a nurse asked me “is your mother blind?” We were advised to place her in a nursing home, but she countered that she was healthy. Every test said so. Why would she give up her independence when there was nothing wrong with her? If she fell and broke her neck, so be it.
We hired people to come into her home and clean, cook and take care of her dog. Her condition continued to baffle us, and her. Four uneasy years passed.
|Who needs sleep? Mom worked by night. Partied by day.|
The description of PSP matched Mom’s symptoms exactly. We got Mom to a neurologist who confirmed our suspicions. (The first neurologist she saw insisted she had Alzheimer's Disease, a diagnosis that in no way matched her symptoms.) The prognosis was ugly and sad. Mom’s main risk factors were falling and choking. PSP patients often died of pneumonia from inhaling food, he said. He also told us that there was nothing to be done. She would die. Slowly.
|A favorite photo. Mom, Rocky, me.|
She had a nice nest egg by the time she retired at age 62. She’d carefully saved her money, and even inherited a bit from her own mother, but she died nearly penniless, having spent a fortune on her care during the last five years of her life. Running out of money was a constant fear. And the fear of dying by choking to death was always with her, too, she told me.
I’m telling this story to inform as many people as we possibly can of the disease of PSP. We were surprised and heartbroken at how many medical professionals failed to recognize Mom’s illness. Ultimately it was my husband who diagnosed her, and he is a songwriter.
We donated our mom’s brain to the Florida Brain Bank and learned from her autopsy that her disease was definitely PSP with no other disease process. A neurologist in Key West told me that Mom’s was only the fourth case of PSP in his career. He said PSP had probably shortened her life by ten years. She was around 70 when she began her decline. She was 77 when she died.
Others who have died of PSP are Dudley Moore, the actor, and Teresa Brewer, a singer, who died at the same age as Mom. Doubtless there are hundreds of people suffering right now with this strange and hellish illness that goes unrecognized more often than not. Once we knew what Mom was suffering from we hooked up with the PSP forum, where the various features of PSP are discussed online daily. It gave us immeasurable relief.
I’m telling this story with the hope that it will help someone, somehow, or some way, to recognize or to manage this particularly horrendous illness that my amazing mother handled with remarkable humor, grace and courage.
Happy Mother’s Day, Mom. Rest in well-deserved peace.
Here's a song Michael wrote with his Nashville friends Dave and Matt Lindsey.