The Woman Who Smells Parkinsonism

ParkinsonsDiseaseby Anniel12/21/15
In October, 2015, The Drudge Report had an article about a woman who can smell Parkinson’s Disease (PD) on people and their clothing. The Drudge Report and the first articles had a kind of “shazaam!” feeling about them, and were misleading on many details. New reports on the story of how her amazing ability came to be known make more sense.

The woman, Joy Milne, who lives in Perth, Scotland, noticed a new “musky” smell on her husband, Les, about 27 or 28 years ago. Les was an anesthetist and Joy decided that the smell came from the medicines he administered to his patients. The smell was persistent and concerned her but she had no idea what it could be. She even told Les he was not showering as thoroughly as he should. His feelings were hurt, but nothing he did seemed to fix the problem.

Six years after she noticed the peculiar smell, Les was diagnosed with PD and lived with the disease for another twenty years before succumbing.

One year Joy and Les entered a charity March for Parkinsonism in Edinburg when she realized she could smell the PD all around her and that it was coming from the people themselves. Les encouraged her to tell the doctors about her strange ability. As a doctor with PD, he wanted to see if her gift could lead to new knowledge about the disease and how to better diagnose it.

At the next PD Conference they attended, Joy asked to address the group and explained her ability. She said she could smell which ones in the room were the patients and she wanted to know if there were others in the room who could smell the disease, too. None apparently responded.

The doctors were baffled, but felt compelled to test her claims. The testing they devised was to have her smell T-shirts that had been slept in by two test groups, one group of six with PD and one group of six without. She was correct on every one of the six PD sufferers, and got one “wrong” on the normal control group. That man came back eight months after his participation in the study to tell the researchers he had just been diagnosed with PD, making her 100% right. Mrs. Milne had been adamant that the man had PD at the time of the testing.

The researchers theorize that the oils on the body, called sebum, carry the smell and they are working to make it possible to identify what part carries the odor so they can create a meter to read a sebum swab. The PD can then be detected quickly and treated sooner. If medicines could be used early in the game, it would at least slow the progression of the disease.

Since almost all PD sufferers lose their sense of smell, I’ve been wondering if it’s possible that the smell of sebum around the oily “T” zone of the face is so intense that after a few years PD people can smell nothing but their own sebum. Just a thought. One gentleman at Bear’s PD group told me at their last meeting that only 10 to 12 percent of PD people retain any sense of smell.

When we discussed this, Bear, who has had PD for a number of years, remembered smelling something odd many years ago when he would take a hot shower and thought it was something from our well water. I vaguely remember him asking me to smell his clothes a few times but I never knew what it was he meant. Maybe he could smell his own Sebum then, or the disease itself.

The articles on Mrs. Milne put the rate of PD in Great Britain at 2 per 1,000. Less than Singapore’s 3 per 1,000. So the purported US rate of just under 14 per 100,000 doesn’t seem so bad, unless you’re the person who gets it.
I have to admit a vast distrust of statistics, these ones in particular, and wonder about the “low” US rate. Anchorage and the Matanuska-Susitna Valley have a population of about 300,000, but we know dozens of PD people, so it is obviously off kilter here.

When reading articles about Mrs. Milne, I remembered a time I had gone several years with an undiagnosed gall bladder problem. Finally the docs found that I had a congenitally malformed gall bladder that was chronically inflamed and had to be removed. Bear told me during the years that I was so sick he could always smell how sick I was. The smell disappeared along with the gall bladder. My son is on the phone right now and he just said he well remembers the smell I had and says it was a “bitter” smell.

Makes one wonder if all illnesses have their own distinctive smell. I have read about cancer sniffing dogs and cats, so who knows?

Cate is back in Chicago for a few months until she can return to Alaska permanently. We were discussing Mrs. Milne and wondering what other illnesses could be smelled. I told her that I was certain things like strep must have their own odors, too. She told me that a year ago she had been to the ER with a severe sore throat and the female doctor said, “I don’t mean to insult you but I need to smell your breath to see if you have ‘strep breath’.” She sniffed and said, “Oh boy, do you ever.” She still had to do the lab tests, but from the smell she knew what med to use and started it right away.

I wonder if old-fashioned doctors used to sniff their patients as a routine part of their diagnostic procedure. Some doctors barely do a real physical exam anymore. They don’t even look at the color or health of fingernails for instance. Today they rely almost exclusively on high tech “tests.”

Life is a strange thing and we never know where new knowledge will pop up. God blesses the world in so many different ways and the gifted Mrs. Milne seems to be such a blessing. • (618 views)

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3 Responses to The Woman Who Smells Parkinsonism

  1. Timothy Lane says:

    Well, my sympathies for Bear (and you). Hereditary deterioration of the cerebellum runs in our family, having afflicted my grandfather, my mother, and now my brother, my sister,and a nephew. In my grandfather’s case it was called Parkinson’s disease, so the symptoms are evidently similar, and in his case it led to total helplessness as well as incomprehensibility.

    • Anniel says:

      Timothy: One of the things I should probably have touched on is that there are many forms of Parkinsonism, and lots of different symptoms. The PD Robin Williams had is called Lewy Body PD, a very complex variant of the disease. His wife feels that the dementia he was suffering from led to his suicide. Lewy Bodies are crucial to a well functioning brain, but then can begin building up and cause such terrible dementia.

      I don’t know if Mrs. Milne smells Lewy bodies at all, or smells them differently from plain old garden variety PD. It would be interesting to know.

      I hope your family members can be helped by some of the new research going on.

  2. Anniel says:

    Today diagnosing PD is simply a process of elimination. There are no definitive tests. Most PD people are told they have benign essential tremor, no problem, all you do is tremble and it is a little embarrassing but it won’t kill you. Bear went through that for several years, then, whoops, your gait is off and your arms are rigid. You really have PD.
    That’s why Joy Milne is so important.

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