I’m Not Afraid of Dementia

Two years ago, I featured Sven Dorsey, who had read this column in the Lebanon (IN) Reporter. He said then to call back “in a couple years” so readers could track his progress with vascular dementia. After calling recently, what I learned about him surprised.

For one, he had been misdiagnosed. Now Indiana University Medical Center specialists believe he has frontotemporal dementia (FTD). A Mayo Clinic website describes FTD as a disorder in which a portion of the brain shrinks. Symptoms vary, but may include the person experiencing dramatic personality changes, becoming socially inappropriate, impulsive or emotionally indifferent, and/or losing the ability to use and understand language.

Said 66-year-old Dorsey in a telephone interview, “I don’t doubt this diagnosis because I can see the behavioral changes. I used to be very patient and now I have no fuse left. I can be perfectly normal one minute and blow my top the next. My memory is increasingly worse, too. I often can’t finish a sentence and I lose track of words.”

Although he holds a driver’s license, his doctors and wife don’t want him driving. When driving, he couldn’t concentrate, ran stop signs, and sometimes couldn’t remember how he ended up in certain places. He retired from his job at age 62 due to these memory issues.

“I am not afraid of dementia or saying I have it,” he said. “Usually, there’s a certain amount of stand-offishness when people learn you have dementia. When I was growing up, people with it were called ‘crazy’ people. I think people today still don’t understand dementia and have a hard time wrapping their arms around it.” He has been fortunate because his wife and friends understand and help.

Through everything, he has maintained a positive attitude. Although many people with FTD are unable to walk or mow the lawn, he can. The month of May, he will be a reader and Eucharistic minister at his church. His biggest strength was his belief in God, he said.

What Dorsey finds most difficult is finding the will to do the hobbies he used to enjoy. He said, “I wish I had a (medical) answer for my form of dementia and the doctors do too. But there is no pill or shot that is going to give me back what I used to be able to do.”