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Sarah Stegall makes some of the best cookies I’ve ever had.
She still makes these chewy, delicious, ginger-molasses delights, but it takes her longer than it used to.
“When I’m cooking, I have to check the recipe three times, to make sure I haven’t left something out,” said Stegall, who was diagnosed with Parkinson’s Disease in 2013.
“It affects my cognition, and I have problems with my balance,” said Stegall, who is also a co-leader of the Parkinson’s Disease Support Group of Southern New Mexico.
Recently, I met with Stegall and her friend Diane Giever, who she also calls her “angel,” to talk about Parkinson’s. April is Parkinson’s Awareness Month.
“It’s called the ‘Snowflake disease’ because there are no two people alike with Parkinson’s,” said Giever, who was diagnosed in 2014 and whose symptoms include a loss of smell and nightmares. “Sometimes, I wake everyone up from my screaming.”
Another symptom is incredible shrinking handwriting. Parkinson’s Disease took my father two years ago at age 79. During his final years, every time I saw him write something it was smaller than the time before. He had another symptom he found both embarrassing and annoying: drooling. It made going out to a restaurant challenging, as he had to constantly monitor his mouth with a handkerchief.
There’s a thing called “Parkinson’s face.”
“Your face is very stoic,” Stegall said, of the expressionless look many Parkinson’s sufferers have.
One of my personal heroes is Maurice White, who founded the Rock and Roll Hall of Fame band Earth, Wind & Fire. White was diagnosed with Parkinson’s at age 51, and lived another 23 years before passing away in 2016. The stoic Parkinson’s face was one of White’s primary external symptoms.
One of the band’s biggest hits was a White-penned number called “Sing A Song,” which includes the line “Smile, smile and believe … sing a song!” Always carrying a positive outlook, White never stopped believing, but in a sad irony, he could no longer smile.
“People know about the tremors, and that’s it,” Giever said. “But what you’re dealing with is not obvious.”
A common perception of Parkinson’s is the disease is not accompanied by pain, but that’s not true for Stegall. “I have a lot of pain,” Stegall said. “I am stiff all the time.”
As with many diseases, Parkinson’s also affects a group of people who don’t have the disease: caregivers.
“They probably have as hard a time as we do, but it’s different,” Giever said.
That’s one reason the support group has segments for family members and friends who care for their loved ones who have Parkinson’s.
Support groups are also a place to make new friends; Stegall and Giever met through the support group.
“We had a lady from Alamogordo who’s in her third year since diagnosis,” Stegall said. “When she started coming to our meetings, it was the first time she’d ever met another person with Parkinson’s.”
“Sometimes, when people get Parkinson’s, they go into themselves,” Giever said. “They’re embarrassed by the tremors and other symptoms. But a social, safe setting could be life changing.”
It was clear to me, in the brief time I spent with these two ladies, support had changed both their lives for the better.
“One of the positive things is the friends we’ve made,” Stegall said. “Our exercise class (taught by Carol Witham) is wonderful for bonding. Everyone’s at a different level, yet we’re all accepting of who we are and where we are.”
I don’t want to put a happy face on Parkinson’s Disease. It killed my father, and probably has affected someone you know.
But listening to the spirit of these two ladies, you realize the disease is a lot like life itself: You get by with a little help from your friends.
Parkinson’s Disease Support Group of Southern New Mexico
Meets 9 a.m.-11:45 a.m. third Tuesday of each month at Holiday Inn Express, 2142 Telshor Ct., Las Cruces. Also available by Zoom.
The next meeting is Tuesday, April 19, and the May meeting will be May 17.
The Local group is under the umbrella of the Parkinson’s Movement and Disorder Alliance, whose website has lots of valuable information: www.pmdalliance.org.