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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 me.
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.”
Another Miracle League season begins
The Miracle League began in the 1990s in Georgia as a baseball league for children with disabilities. The kids play on accessible fields and have special rules. The League now serves 200,000 children and young adults in 250 affiliate organizations throughout the world.
Teresa Hooper reads this column in the Grand Island (NY) Dispatch. Hooper had proposed an accessible playground for her city four years ago, but funding fell through. Her mother then introduced her to Fran McMahon, a restaurant co-owner who was raising four children with disabilities. Since then, Hooper and McMahon have been working overtime trying to start their own Miracle League.
Hooper's connection to children with disabilities came through a relative. “My 10-year-old niece Ellie has a huge personality, one that can light up a room,” said 43-year-old Hooper in a telephone interview. “At her birth, doctors gave her only 20 minutes to live. She has only partial lung capacity on both sides of her lung and she uses a wheelchair. She is a miracle in itself.” Hooper has a 7-year-old son anxious to become a “buddy” by pairing up with Ellie or another child with disabilities during Miracle League games.
The Grand Island field should be ready by August 1. “The (accessible) field itself would cost $500,000 to build if we had to pay every penny,” she said, “but we have some extremely generous businesses donating machinery, time, and materials.” The Buffalo Sabres NHL hockey team and former players have donated $150,000. The Grand Island Lion's Club provided a matching grant. Checks arrive almost daily. The national Miracle League organization has helped in many ways.
An accessible field is an absolute must. Kids with mobility disabilities and/or those using wheelchairs or walkers can't move safely over dirt, grass, and bases. The Miracle has special rules, too. Every player bats and scores once each inning, the players are always safe, each player gets a “buddy” helper, and both teams win.
Her city has about 100 kids ready to play. She said, “We had a benefit dinner on March 12. Some parents brought their children just to introduce them to Miracle League. While watching the videos, many parents just sat there and cried. The kids want to play. My niece is so excited. Every couple days, she calls me to ask, “Has it started yet?”
Mingo turns despair into hope
Sometimes, a person with a disability may struggle emotionally to the point of pondering suicide. Robert Mingo of Minneapolis has been there and felt that. In part, his cure for depressive thoughts for years now has been his poetry.
“I have a form of muscular dystrophy called FSH muscular dystrophy,” said 49-year-old Mingo in a telephone interview. “I use a wheelchair now and sometimes need help getting dressed. I don't take a shower by myself and always make sure I have someone within yelling distance. Also, even typing on a computer can be very painful.”
The Muscular Dystrophy Association website claims his form of the disease causes weakness and wasting in eye, mouth, shoulder, upper arm, and lower leg muscles, and later in abdominal and hip muscles.
He began noticing symptoms at age 16. At first, he struggled combing his hair because he couldn't raise his elbows above his shoulders. Then he started limping. Over the years, he would incorrectly attribute what was happening to his body to other physical ailments unrelated to muscular dystrophy.
He wasn't diagnosed properly until age 40, in 2001, just six months after marrying wife Amy. When coming home from the doctor that day, Mingo had to tell her he had an incurable disease that would progressively worsen. Rather than form a wedge, he said, the disease “drew us closer together and to God.”
He said, “I've been using a wheelchair since 2003. I was really depressed about a year afterward and just wanted to die. Writing a poem got me out of it and took me on the road to recovery. I realized then I could spend the rest of my life emanating despair or the rest of my life emanating peace, hope, and light. I chose the latter.”
Poetry was the gift God gave him to cope, he said. He has penned hundreds of poems and gathered many of them in a collection called Poems for the Soul. About the book, he said, “People have said it has changed their life. It made them cry in a good way. When I wrote about suicide, people told me no one else had understood how they felt. They needed a way to deal with that sadness. My poetry is all about turning that sadness into hope and to help others. I'm happiest when I'm helping others.”
Facebook: “Disabilities by Daniel J. Vance” [Blue Valley Sod and Palmer Bus Service made this column possible.]