Like Others With Parkinson’s, My Sister Lost Her Sense of Smell

Jo Gambosi avatar

by Jo Gambosi |

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My sister Bev, who has stage 3 Parkinson’s disease (PD), is delighted when the spring equinox arrives in Ohio, where she lives. Gone for the most part are the blustery winter storms and frigid temps. Appearing are the fragrant floral blossoms and the season of smells on the outdoor grill.

But Bev experiences one of the more common nonmotor symptoms of PD, which is loss of smell. She has beautiful lilacs in her yard (a fragrant smell I miss in Arizona), but she cannot smell them, even up close.

My sister started experiencing loss of smell and to some extent loss of taste about seven to 10 years before her PD diagnosis. The medical term for a decreased sense of smell is hyposmia.

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Parkinson’s News Today‘s Alice Melão reported on a 2018 study in the Journal of Neurology suggesting that an impaired sense of smell or taste can increase a person’s risk of developing PD by about 2.5 times.

The reason for loss of smell in PD is thought to be related to changes in the brain’s olfactory bulb, which is responsible for sensing smell. Research has shown that the olfactory bulb is smaller in people with PD. Over 90% of people with PD experience a loss of smell.

My sister did receive chemotherapy in the past to treat her colon cancer, which also may have contributed to a decreased sense of smell. She is now an eight-year cancer survivor.

The Michael J. Fox Foundation for Parkinson’s Research notes that, “Most people do not connect losing their sense of smell to a Parkinson’s diagnosis. After developing motor symptoms and talking to a doctor, however, they may recall that years or even decades earlier their ability to smell decreased.”

Recent research has included discovering smell tests that can be used to detect PD at early stages. The usual method of testing smell is the “scratch-and-sniff” method, where common scents are placed on paper or in a container. A study in the Journal of the Royal Society Interface last year used a newer approach for testing the sense of smell through a capsule-based test.

There are of course other reasons that people develop a loss of smell, including allergies, medications, a cold, and advancing age.

Not everyone with a loss of smell develops PD, but it is a symptom to discuss with a healthcare provider if it is an ongoing issue.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Mr. Bradley avatar

Mr. Bradley

Thanks for raising this issue. I lost my sense of smell almost 15 years before my PD diagnosis. We lived in the country at the time & had a couple of pet sheep. It was my task to clean out their pen each week and give them fresh straw to lie in. Sheep are such sweet animals and look all cute & fuzzy from a distance but, believe me, they are peeing and pooping machines. The stench could be overwhelming in a confined area, like their pen. So when I noticed some time later that my sense of smell was gone, I attributed it to those weekly muckings.
Then when I was diagnosed with PD in 2017, and learned the true nature of my case of hyposmia, I was stunned to realize it wasn't our sheep that had taken my sense of smell but this disease. As you point out, while not everyone who loses their sense of smell gets PD, many do. Which is why articles like this are so helpful in spreading the word about early indicators of approaching PD.
Interestingly, there are still a few things I can smell very faintly after all these years----a dead skunk (....in the middle of the road, stinking to high heaven....), a fresh pizza in the box when I bring it home in the car from Dominoes, and, best of all, fabric dryer sheets that you put in the dryer so the clothes don't cling together. Don't ask me why!
I wonder if other readers out there have the same experience of being able to smell a couple of oddball items while their olfactory nerve has shut down everything else.

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Jennifer McLachlan avatar

Jennifer McLachlan

I developed problems with my sense of smell at least 10 years before diagnosis. It began with a distortion of smell. Perfumes, which I used to love, began to smell quite different. What I knew was the smell of toast smelled quite different. Now nearly 9 years since diagnosis, I have virtually no sense of smell and almost no taste. I miss these senses so much, but doubt that they will improve. I have just learned to live with this symptom.

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Karla F Burkhart avatar

Karla F Burkhart

I lost my sense of smell around age 20. I developed Parkinson's in my late 60s. My question is, which came first, the loss of smelling or the Parkinson's. We attributed the smell to concussion.

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BARRY BLOCK avatar

BARRY BLOCK

Interestingly, I lost both taste and smell about 30 years ago after having a wisdom tooth extracted. The taste returned about 6 months later, but the smell never did. I was formally diagnosed with stage 2 PD 4 years ago.

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Ruth Stwin avatar

Ruth Stwin

I'm not aware of when I actually lost my sense of smell, but I think it was around the time I was diagnosed with PD. I am happy, however, when I can smell a few of my favorite scents. If I hold a lilac close to me, sometimes I can smell it, and I was excited the other day when I smelled fresh coffee from another room in our house.

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Jeff Hill avatar

Jeff Hill

I lost much of my sense of smell at least 5 years before diagnosis. The most profound loss was sweet smells like perfume and flowers. I didn't connect it with Parkinson's until I developed tremor and looked up related symptoms. Oddly, although my father had PD, he never mentioned this symptom so I was not on alert for it.

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lenetta avatar

lenetta

It is good to get new updates on the lastest findings in PD! I used to do many clinical trials when I lived close to a bigger city, but it is difficult to do it in the small town where I now live. I have been diagnosed since 2009 and had DBS in 2017. Does anyone know of clinical trials for PD patients who have had DBS? I cannot find any that will accept me because of the DBS factor.
HOPE for a cure!!

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