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Looking Back, Patient Wonders if Loss of Smell Was Early Parkinson’s Disease

Looking Back, Patient Wonders if Loss of Smell Was Early Parkinson’s Disease

Jean at the Davis Phinney Foundation Victory Summit in Phoenix.

For years, Jean Burns, 62, always just assumed her declining sense of smell had something to do with allergies. 

She was in her early thirties, sitting in her parents’ backyard, when she first noticed that she could barely smell the fresh, budding blossoms emerging from the branches on their orange trees. 

Slowly, her sense of smell seemed to get worse: Jean would remark that the chocolate cookies she’d freshly baked didn’t have that same, strong appetizing scent, or that drives by the local farm were no longer accompanied by the familiar pungent smell of cows. 

Today, she’ll bake bread in her kitchen, and smell pretty much nothing at all. At least she can’t smell the cat’s litter box either, she says with a laugh. 

In 2003, after visiting her doctor due to a tremor in her left hand, Jean was diagnosed with Parkinson’s disease (PD). Since then, the expert PD blogger has done her research, and now she wonders if her loss of smell was actually the early stages of PD. In fact, the majority of people with Parkinson’s have a reduced sense of smell, and studies have shown that the onset of this symptom often precedes the motor symptoms of the disease.

Jean is a member of the Parkinson’s Progression Marker’s Initiative (PPMI) patient committee and she recently learned about the study’s plans to expand to learn more about whether, down the road, a reduced sense of smell could serve as a Parkinson’s biomarker. Having already participated in more than 10 clinical trials herself, Jean is a huge proponent of sharing research opportunities like PPMI with others.

While Jean can’t participate in this particular study, she is eager to support by recruiting friends and family members over the age of 60 who do not have Parkinson’s to take a brief survey to see if they might qualify. Jean’s sister-in-law has already agreed to take the survey. Like Jean, she too has noticed that her sense of smell has deteriorated over the years.

Even though she can only just smell the Texas Mountain Laurel by her front door, Jean very much appreciates the beauty of her surroundings, which she surveys on frequent bike rides throughout her Arizona neighborhood. 

Jean says she plans to continue to blog about her own experience with PD at Web site PD Plan 4 Life, which she co-founded with friend Sheryl Jedlinski in 2007, and she will always be on the lookout for studies she can participate in.

“Others participated in clinical research so that I could have the medication I do today. I believe it’s every person’s duty to stand up and volunteer. Even people without the disease can make a big difference.”  

Follow Jean’s lead and make a difference by encouraging family and friends to visit www.michaeljfox.org/PPMI/smell to learn more. 

 

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