| September 2012
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Strong Ties: Though life has changed dramatically in the last few years, Elizabeth Dekle still lives in the house she grew up in on Elizabeth Street. Photo by Pamela Gerard
Imagine you’re walking down 24th Street and suddenly you are unable to move. You don’t fall, but your muscles freeze in place. Later, you’re trying to sign a sales receipt, but a tremor in your hand keeps you from writing your name. Then walking back to your house, your knee throbs with pain, making you limp. What’s going on? you ask yourself as you stare in the mirror, seeing the smooth clear face of a 21-year-old. Have I aged 50 years?
This is what happened to Noe Valley resident Elizabeth Dekle. At 21, she began to notice strange symptoms. In fact, it was hard for her not to notice. “I would lose my balance and crash into whatever would hold me,” she says. “I had a tremor, as well as vertigo, and this stiffness or rigidity in my left side. But the most terrifying symptom was the freezing.”
The stall would last anywhere from a few seconds to an agonizing three minutes. “It’s like there’s an internal debate between your feet and your brain that goes on and on until one wins,” she says.
For five long years, Dekle searched for the cause of her worsening symptoms, going from doctor to doctor. Finally, a neurologist at UCSF gave her an answer: she had early-onset Parkinson’s disease.
“I was actually a little joyful when I got the diagnosis,” Dekle says with a small laugh. “I know that others would have a different reaction, but after so many years of not knowing, of being through this physical and emotional hell, it was a relief to be able to put a name to it and go from there.”
Now 27, Dekle is busy writing a blog about her illness (and her culinary dreams), joining fundraisers for disease research, and organizing a Parkinson’s support group.
While Parkinson’s disease affects five million people around the world, early-onset Parkinson’s is fairly rare. Only about 10 percent of those who suffer from the disease are diagnosed before the age of 40, according to the Parkinson’s Disease & Movement Disorder Society. The most famous person is actor Michael J. Fox, who was diagnosed at 30.
Named for the doctor who first described it as a palsy back in 1817, Parkinson’s is a degenerative disease that attacks the central nervous system. Symptoms arise from a lack of dopamine, a chemical messenger in the brain that coordinates muscle movements.
The disease takes a heavy toll, especially if you don’t know you have it. Trained in the baking and pastry arts program at the California Culinary Academy, Dekle worked for two years as a private chef and then at several restaurants during her early and mid-20s. But as time wore on, she found it hard to perform certain tasks. “My hands shook and I couldn’t stand up. My schedule would start to be reduced by my bosses.” Fearful of being fired and unaware of the source of her problems, Dekle would eventually quit, one job after the other.
Today, she is on a standard treatment for early-onset Parkinson’s, a drug called Ropinirole, which replenishes dopamine. She will take the drug, or another like it, for the rest of her life—or until a cure for Parkinson’s is found.
The medication is helping—in July she completed her first 5K race, as part of the San Francisco Marathon. “I tweaked my knee in the first mile. It was the most intense and grueling thing I’ve ever done. Finishing it was such a relief, and I have such a proud feeling of accomplishment.” She also raised $800 for Team Parkinson through sponsorships of her race efforts.
Dekle has a steady job, although it’s not in the restaurant business. She still bakes “by request,” but works as an executive assistant at a home healthcare office. “The irony is not lost on me,” she says.
So far, her employer doesn’t know about her Parkinson’s. “To most people I am ‘out,’” she says. “But I keep it as anonymous as possible, although people notice the tremor. The other day a stranger asked me if I was drunk because I was having trouble standing in one spot. I know people are going to find out, and I’m fine with it.”
One reason she feels secure is her family and community. Dekle, whose friends call her “Liz,” has lived in the same house on Elizabeth Street all of her life with her grandmother. She attended St. Philip School and Immaculate Conception Academy, and did a 21/2-year stint at Loras College in Iowa before the Culinary Academy. A favorite hangout is Bernie’s coffeehouse on 24th Street, where she meets up with friends and family, including her “almost aunt” Bernadette Melvin.
Dekle attends St. Philip’s services every week and is a lector at the church. Faith is a huge part of her life, and she often writes about it in her blog,http://diningwithdisease.wordpress.com/.
“I started the blog as a way to express what it’s like to be in your 20s and have this quote-unquote old person’s disease,” she says. “I’m trying to bridge the gap between age and the disease, and I want my readers to know that knowledge is power.”
Dekle has her good days and her bad days. On her good days, she’s scaling the hills—Billy Goat, Liberty, and Grand View—and enjoying her newfound mobility. But at other times, when her tremor becomes more pronounced or her balance is off, “my facial expression fades to the point where people ask me if I’m upset or angry,” she says. “Overall, I like to think I’m doing a pretty good job managing. For the most part, I know what I can handle. When I’m really not feeling it’s a good day but I have stuff to do, I just do it. Some days I force myself to do things I probably shouldn’t, but as they say, what doesn’t kill you makes you stronger, right?”
Dekle attends a support group at the Veterans Administration, and says she is the youngest person there by about 30 years. “It’s difficult but interesting.” She’s in a different place in her life than most of her cohorts, many of whom are much further along in the disease.
In July, Dekle decided to start her own support group, SF Parkinson’s Connect (www.sfparkinsonsconnect.wordpress.com). Members get together online or at local cafes. “I envision it as a place for anyone who is affected by Parkinson’s and needs a place to talk about it, whether it’s patients, caregivers, loved ones, or those who want to learn more,” she says.
More so, it’s a place for those like her who haven’t lost hope. “In the support group [at the VA], you talk about everything going on with you, and it’s not necessarily beneficial in the sense of fostering a sense of what onecan do. So many focus on what they used to be able to do, instead of looking forward to what they still can do. There’s a lack or loss of joy for some, and if you keep living in the past, nothing will go forward.
“Really, you have to pick yourself up and say, ‘Okay, here’s where I will start my life from scratch.’ There is a sense of reprogramming yourself.”
To find out more about the support group (or the baking), email her at email@example.com.
Elizabeth Dekle often strolls with her dogs Logan and Mandy near her home on Elizabeth Street. When she’s feeling adventurous, she hikes up to Grand View Avenue. Photo by Pamela Gerard
Here’s an excerpt from Elizabeth Dekle’s blog Eating for Life—A Pastry Chef’s Journey with Early Onset Parkinson’s (diningwithdisease.wordpress.com).
The Beastie Boys say, “You’ve Gotta Fight for Your Right.” Twisted Sister says, “We’re Not Gonna Take It.” AC/DC tells me they’re ”“Spoilin’ for a Fight.” And Ozzy—well, he’s on a “Crazy Train.”
The downward spiral of depression grasps us all at some point, but for Parkinson’s patients, it can happen more often than you might think.
Do I not belong? Is everyone staring at me? Am I going to fall? I used to enjoy doing _______. Now I can’t find the joy in it.
The feeling of not “fitting in” in society can be overwhelming sometimes, which can most certainly certainly cast me into the throes of a depressive episode. But what does it the most is the look I get when I tell people I have Parkinson’s. The second it registers, there’s this look in some people’s eyes. They may not mean to do it, but it says quite emphatically, “I’m so sorry!” I don’t want the pity, I need the support! It seems illogical for someone to be 27 and have what is perceived as an “aging” disease. Why is this?
So yes, neurologically speaking, I’m sick. Mentally I’m not. Physically…well…50/50.
Remember the scene in The Little Mermaid when Ariel is on a rock singing “Part of Your World”? That’s what it feels like sometimes. Watching the “humans” walk and play with their dogs on the beach, while I’m clinging to some rock with the waves trying to pull me back. In fact, the more I think about this, the better an analogy it makes…
“Maybe he’s right. Maybe there is something the matter with me. I just don’t see how a world that makes such wonderful things could be bad.”
Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin’ free—wish I could be
Part of that world...
I can’t even stay in the sun too long either! I get a reaction that makes me itchy.
The jealousy, if you let it get to you, gnaws away at you, filling you with a resentment that doesn’t let up. Which, of course, then brings you back to a depression.
So, how do we—Parkinson’s patients—fit into the jigsaw of society? We have to make ourselves fit. That’s the answer! And by God, I do. I refuse to let myself be thrown back into the sea of depression and pity because my legs don’t work sometimes, or because of my tremor, or because of any of the other symptoms I have that make me stand out in society.
The Beastie Boys were right. “You’ve Gotta Fight for Your Right” to belong (and to party). Twisted Sister was right too, because “We’re not gonna take it anymore.”
AC/DC was “Spoilin’ for a Fight” because they must have been waiting in line at Social Security, or trying to get an appointment with Disability, or sitting in a psych evaluation that wasn’t even addressing the reason you filed for disability.
What about Ozzy? you may be thinking. How does he fit in? There’s a line in “Crazy Train” that stands out, “I’m living with something that just isn’t fair.”
The trick to a jigsaw is to get the outside edge done first, then everything falls into place more easily, especially that last piece—you know the one I mean, the one that has some funky-shaped bit that never locks in anywhere until the end.
We are the last piece. We do belong. We complete the puzzle, because of our uniqueness.
Cranberry Walnut Cookies
Pastry chef Elizabeth Dekle was gracious enough to share one of her recipes. She writes in her blog, “I created this recipe while I was working for a restaurant here in SF. The cookies are particularly delicious with a glass of milk, and especially at around 1:30 in the morning…”
4 oz. unsalted butter, room temp/softened
1/2 cup each, white sugar/packed brown
1 tsp. vanilla
1/2 tsp. orange extract
2-1/4 cups all purpose flour
1/2 tsp. each, baking soda/powder
Pinch of salt
3/4 cup chopped walnuts
3/4 cup chopped cranberries
Preheat oven to 350 degrees.
Beat butter slightly to break up any lumps of cool/cold butter. Turn off mixer and add sugars, mix briefly to incorporate. Turn off mixer and add eggs and extracts, mix briefly.
Mix dry ingredients except fruit and nuts, add and mix until dough forms. Add cranberries and walnuts and mix to combine.
Scoop out and roll gently between palm ‘heels’ to form a smooth round and lightly press top down.
Bake 11 to 13 minutes, until edges begin to turn golden.
Yield: Approximately 14 cookies