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07/01/2015 08:00 AMMore than a decade ago, Deborah McLoughlin was responsible for taking care of three elderly relatives. When she was diagnosed with Parkinson’s disease, she didn’t want anyone to know.
“They would have been devastated because I was the only one around to take care of them,” says Deborah. “I just put it in the background.”
Five years ago, she took to blogging as a way to cope with her diagnosis. Deborah, who has always enjoyed writing short stories and poetry, began to wonder how people accept a diagnosis for Parkinson’s disease, a disease without a cure.
“I started blogging about how a person goes from denial to acceptance of the diagnosis and the cycle of emotions you go through,” says Deborah. “I realized and wrote in one part, that if I accept it, it means I’ve given up. If you give up, you stop exercising or you might be lax on your pills. It’s a disease that can’t be stopped, but they can slow it down a bit.”
After three years of blogging, Deborah decided her blog posts might make an interesting book. She thought she could take a couple days to compile her posts into a finished work. Now, two years later, her book is finally at the printer.
“I found an editor who was very good and helped me make it a little deeper and more interesting than I’d done myself. She knew the questions to ask to get really into the emotional side,” says Deborah, who is unsure how many people her blog reached, but is hoping her book “sheds some renewed light on the subject.”
Deborah’s book—My Crystal Ball: The Invisible Side of Parkinson’s—explores the future you see when you are diagnosed with a disease as well as the emotional toll a diagnosis likes hers takes on a person. She talks about several challenges she has faced, including using a cane for the first time, using a cane in public, and how to tell people about your diagnosis.
“I kept the secret for 10 years. It’s hard to tell people because in the beginning, every time you say it, it becomes more real,” says Deborah. “You get different responses from different people.”
When Deborah was diagnosed 13 years ago, she was told they were hoping to have a cure for Parkinson’s disease in the next 5 to 10 years. While there is still no cure, she considers herself lucky as her disease has developed very slowly.
“I’m lucky to be able to do the things I’m supposed to be doing,” she says.
Deborah has been fully retired for 10 years and spends her winters in Florida with her husband Bernie. Deborah worked at SNET and she and her husband, along with Janice Heggie-Margolis, founded the Connecticut chapter of MADD. The McLoughlins were injured by a drunk driver in an accident in 1984.
“At that time, drunk driving wasn’t considered a serious crime and the fellow who hit us got a $50 fine for failure to drive right,” says Deborah. Seeing the growth of MADD “is wonderful and since its presence, there has been a big, big difference in the statistics.”
Now the couple is looking to spend even more time in Florida as Bernie doesn’t like the cold and the cold weather can aggravate the symptoms of Parkinson’s disease. In Florida, Deborah attended a support group.
“There are wonderful people and it’s wonderful to see how they’re coping, but the downside is you can see what might happen to you,” says Deborah, who grew up in New Haven and moved to North Haven when she got married. “It is more uplifting than depressing, though, and they have shared what works for them.”
Now Deborah has the final proof of her book, including the cover, but she is still waiting to hold her book.
“I haven’t held the finished product yet. I think I’ll cry,” says Deborah, who has been a member of the North Haven Art Guild for 15 years. “Painting and writing are my two great loves. Now that I finished the book, I’ll start painting.”