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Woman uses her super sense of smell to help scientists detect Parkinson's in minutes

Joy Milne first smelled the disease on her husband 10 years before his diagnosis.

There is currently no definitive test to detect Parkinson's.

We don’t always choose our gifts. Joy Milne’s superpower, one she inherited from her mother’s side of the family, was having a highly acute sense of smell.

Milne might have never used her olfactory talent as a force for good, had it not been for her late husband, Les Milne.

According to NPR, Les and Joy met in their teens and it was love at first sniff. "He had a lovely male musk smell. He really did," she told NPR.

After many years of a happy marriage, Joy noticed her husband, then in his 30s, had developed an “overpowering sort of nasty yeast smell.” The running joke-slash-complaint was that Les “wasn’t washing enough.”

Eventually Les’ scent wouldn’t be the only thing to change. Joy told NPR that her once funny, thoughtful husband completely transformed, becoming “moody,” irritable and even aggressive. He wouldn’t receive a proper Parkinson’s diagnosis until the age of 45.


Joy didn’t suspect that she could somehow detect the disease until going with Les to a Parkinson’s support group and noticing that the same distinctive smell seemed to fill the room. After sharing the discovery with her husband, she knew she had to take action.

Joy began working with researchers at University of Edinburgh and through a series of experiments confirmed that she could sniff out Parkinson’s with flawless accuracy. Now scientists have created a breakthrough method of detection based on Joy’s special ability.

parkinsons

This new test works in mere minutes.

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Under the belief that Parkinson’s affects a person’s odor due to a chemical change in sebum, or skin oil, doctors simply run a cotton ball along the back of the neck, then identify specific molecules linked to the neurological condition. The BBC reported that the skin-swab test is 95% accurate under laboratory conditions.

Though this medical advancement is still in its early stages, the discovery is promising. There is currently no definitive test to get a Parkinson’s diagnosis and, as Joy explained to Sky News, it is often not identified until patients have “over 50% of neuronal damage.”

Les died in 2015 at 65. An earlier diagnosis might have provided the opportunity to improve his lifestyle, which could possibly have offset symptoms. “It has been found that exercise and change of diet can make a phenomenal difference,” Joy told The Guardian.

She also recalled to BBC News that it would have meant having an explanation for the mood swings, not to mention traveling, spending more time with family … making the most out of what time was left. That perhaps is the biggest saving grace an early diagnosis could offer.

Les’ final wish before he passed was for Joy to continue using her gift, assuring that "it will make a difference." Joy is keeping that promise and currently extending her “super smeller” power to help smell other diseases like cancer and tuberculosis (TB).

While she notes that her superpower does make outings like shopping a “curse sometimes,” she also sees it as a “benefit” allowing her to help others.

Sit down, close your eyes, and try to remember how you got to where you are.

How easy is it for you to visualize the path you took today? How did you remember where to go? Maybe you know to always turn at an important landmark — the tree your mom planted, for example. Maybe there was a sign telling you the right direction.


Photo from iStock.

For people living with dementia, these navigational clues can be hard to read.

According to the Alzheimer's Association, about 5 million Americans live with some form of dementia. Dementia isn't a single disease — rather, it's a broad category of cognitive and neurological symptoms. The most common cause of dementia is Alzheimer's disease, but there are many others, including strokes or Parkinson's disease.

Dementia can interfere with many of the brain's mental processes, including spatial memory — the part of the brain that deals with navigation. This is why many people living with dementia may sometimes find it hard to get around, even in familiar places.

Part of our ability to navigate lies in the hippocampus; dementia can interfere with processes in this region. Image from Henry Gray/Wikimedia Commons.

Getting lost can be especially dangerous for people who live with advanced forms of dementia — it can mean forgetting how to get home and being exposed to the cold or rain or running into dangerous situations like wandering across a highway.

A possible solution for this problem lies in the designs of the very buildings we live in.

Woodside Place is an assisted-living community in Pittsburgh, Pennsylvania, that was built by Presbyterian SeniorCare in 1991.


Photo by Presbyterian SeniorCare, used with permission.

Though not as common today, in the 1980s, many facilities used physical or chemical restraints to prevent their residents from moving around.

Woodside, on the other hand, was specifically built and decorated to accommodate the natural wandering tendencies of people living with dementia.

Clever design decisions — like the use of color — help reinforce and strengthen the residents' spatial memory.

Many care spaces are designed like hospitals, fairly sterile and visually repetitive, white hallway after white hallway. By making the space more colorful, Woodside provides a quick intuitive reminder for residents to identify where they are.


Photo by Presbyterian SeniorCare, used with permission.

At Woodside, even the staff's uniforms are color-coded based on which wing they work in.

"[Patients] may not remember my name, but they remember she's green, she belongs to me," Carrie Chiusano, executive director of Presbyterian SeniorCare's dementia care center, explained.

Staff uniforms are color-coded. Photo by Presbyterian SeniorCare, used with permission.

Another strategy Woodside uses is to have decorations and signs that are meaningful and packed with emotional relevance.

Outside Woodside's green treehouse-themed wing is a large tree decoration. These cueing devices are more than just props; they serve as subtle visual reminders and landmarks for residents.

Woodside has also invested in signs and decorations that have personal significance to the residents. For example, many residents have decorated their doors and living spaces with photographs of themselves, family, and friends, so that they can more easily identify which room is theirs.

This can apply to more than just personal pictures; it can apply to meaningful symbols as well. Mary O'Malley, a Ph.D. student at Bournemouth University in England, told Upworthy of a care facility she visited where one area was decorated with generic pictures of water lilies and another was decorated with a painting of the city's history.

Water lilies vs. New York City. Which means more to you? Images from iStock.

Though the lilies were very pretty, O'Malley said the residents' emotional connection with their home city ultimately seemed to be a more useful navigation tool.

Researchers like O'Malley are constantly looking for ways to design living spaces specifically for people living with dementia.

Along with her supervisors, O'Malley is studying how people learn and remember routes and directions. She's taking a multidisciplinary approach, using psychology, neuroscience, sociology, and perhaps most importantly, direct conversations and feedback from people living with dementia.

Mary O'Malley conducting research at Bournemouth University. Photo from Philip Hartley/Bournemouth University.

O'Malley is interested in what type of spatial memory is most susceptible to memory loss.

For instance, we know that most older adults seem to work better with landmarks ("head toward the church") rather than plain directions ("turn right at the church"). O'Malley wants to see if this pattern holds true in people living with dementia as well. She's also studying the way our brains read maps to see if maps can be more user-friendly.

As we learn more about these designs, we can incorporate them not just into care facilities and hospitals, but into community spaces too.

While care facilities can be designed for residents with specific needs, it's estimated that about 60% of people living with Alzheimer's live within the larger community, rather than in assisted-living facilities.

"If you want to support people so that they remain in the community, then you should be making these changes to the community," O'Malley said.

These design decisions, such as the use of visual reinforcement and meaningful decoration, could be easily incorporated into the spaces we see around us every day. Next time you find yourself stuck trying to navigate, think about all the little visual cues you take for granted and how easy it would be to make them better for everyone.

Researchers in Australia believe they've discovered something that could be a flying leap forward in the battle against Parkinson's disease:

Photo by Jens Maus/Wikimedia Commons.


The breakthrough? A way to detect the disease using a simple blood test.

Photo by PublicDomainPictures/Pixabay.

If they're right, this would be a big bleeping deal.

According to the Parkinson's Disease Foundation, currently there is no uniform method of testing for the condition. Prospective patients are observed by a neurologist for symptoms that indicate brain cell loss has already begun.

A blood test, like the one developed by the La Trobe University team, could detect the disease before symptoms show up, allowing patients to start treatment before they suffer too much irreversible damage.

How does the test work?

Photo by JPC24M/Flickr.

Science.

No, seriously. How does it work?

The research team discovered that Parkinson's causes cell mitochondria — which the faint, half-remembered voice of your ninth-grade biology teacher is currently reminding you is the "power plant of the cell" — to become hyperactive.

The test scans for byproducts of the abnormally behaving mitochondria.

As always, there's still lots more work to do.

Speaking to The Guardian, lead researcher Paul Fisher said his team didn't have the financial resources to study whether the hyperactive mitochondria detected by the test are entirely specific to Parkinson's or also occur in others with similar neurological conditions.

They've also run only one trial to date.

But it's the kind of discovery that provides a lot of hope to a lot of people.

Actor Michael J. Fox's foundation provided funding for the research that led to the discovery of the test. Photo by Astrid Stawiarz/Getty Images.

In addition to the estimated 500,000 to 1 million people with Parkinson's in the U.S. (about 60,000 new Parkinson's patients are diagnosed annually) and the 7 million to 10 million with it worldwide, there are also millions more people whose family history puts them at a greater risk to develop it.

Early detection might be the key to helping them live longer, healthier lives.

Actor and longtime anti-Parkinson's advocate Michael J. Fox's foundation provided funding for the research, once again proving that when you give money to science, science gives you back something awesome.

No flying cars yet.

GIF from "Back to the Future"/Universal.

But I'll take showing a debilitating disease who's boss any day of the week.

Image pulled from Pixabay.

Pakinson's disease causes unintended movements from a brain disorder affecting the nervous system.

"Watch him like a hawk. Take no excuses."

Those were some of my mom's last words to me as I set off with my dad for D.C. He hadn't been up north to see his own father, who is pushing 100, in over a year, and my dad's advanced Parkinson's disease made traveling alone impossible. So I was enlisted to go with him. For the first time, I'd be in charge of his medication, along with shepherding him through the airport, getting him in and out of bed — pretty much everything.

"You can't take him at his word," she'd tell me.


"Don't hand him his pills and walk away. He'll never take them. Don't leave him while he's brushing his teeth at night. He'll never make it to bed before the medicine knocks him out. Don't assume he's going to do what he says he's going to do."

"You have to watch him like a hawk," she said. "Take no excuses."

Maybe that's why it felt so good when I was finally able to text her, on our return trip, that we had made it through security and were almost at our gate.

My dad was in the bathroom while I leaned against the wall outside waiting for him. We were flying out of Reagan International, and in four days of travel, there were no emergencies. No crises. No disasters or catastrophes. There had been no medicine mix-ups, no missed doses, no falls, no accidents. Everything had been fine.

That's not to say it had gone easy, but at least it had gone. Though we weren't home yet.

Not quite anyway.

When my dad came out of the bathroom, we headed to the seating area in front of our gate. As we passed a small concession stand, awkwardly pitted in the middle of the room like a prize counter at an arcade, he mumbled something about being thirsty.

"A pink lemonade sounds good," he said. And he reached out and grabbed one from the cooler.

We had all of our bags on us. Him carrying one, me rolling the other with a duffel slung over its handle. I looked at the narrow, winding queue leading to the cashier and back down at our bulky bags as my dad slowly started to drift away from the concession stand, lemonade still in his grasp.

"Why don't we get settled over by the gate, put our bags down?" I said. "Then I'll come back over and get you something to drink."

With him, I had learned to think several steps ahead. I learned to scout obstacles and anticipate problems.

I learned enough to know that, with only one hand free, he'd have trouble getting his wallet out of his sweatpants, or he'd trip over his feet and tumble into the people in front of us, or he'd inadvertently shoplift this lemonade if I didn't take it and put it back.

But still, it felt awful to say something so patronizing to my own father.

He agreed that we should get settled and we made our way over to the gate, finally coming to a stop in front of a row of roomy handicapped seating.

"Dad, you want to sit here with the bags while I go get us a drink?"

"OK, sure."

He just stood there.

"Dad?"

He does this thing where he's always standing. He'll wander into a living room conversation where everyone's sitting, and he'll just stand in front of a seat and talk from there. You'll ask him if he wants to sit, and he'll bend his knees slightly but then pause, almost as if he's forgotten he was going to sit in the middle of doing it.

There's something unsettling about someone standing when you feel like they should be sitting.

"Dad, you want to just sit here for a minute while I get us a drink?"

On that, he plopped down and I positioned our bags so they'd be in his sight and reach.

"A muffin would be good, too," he added.

"OK. I'll see if they have muffins."

I turned and headed back to the concession stand. I couldn't have walked more than five or six steps before I glanced back over my shoulder at him. He was still sitting there. I don't know what I expected to see — like he was going to erupt in flames the moment he was out of my sight or something.

I got in line, and as I waited my turn, I kept looking back.

“Watch him like a hawk."

We hadn't come this far to have him fall down and break his wrist or have our bags stolen from under his nose.

We hadn't come this far without a disaster to have one now.

I paid for the lemonade and a blueberry muffin I spotted in the display case. And I looked back over at my dad again.

He was standing.

What is he doing? I wondered. Is he sifting through our bags? Is he going to wander off?

I hurried back over and found him contemplating our belongings. He was hoping to find a bag of sliced oranges we'd packed for the trip, trying to solve our luggage like it was some impossible puzzle.

I unzipped the outermost pocket of my suitcase and handed him the oranges, the lemonade, and the muffin.

We both sat down and he began to eat.

He attacked the muffin the way you might eat an apple — gripping it with the entire width of his hand and lifting it to his face for enormous bites. It crumbled as he mauled it, massive pieces tumbling over the wrapper and landing on him. All over his lap and his shirt and his seat and the seat between us.

He was not mortified, like I would have been if it were me.

He wasn't even affected.

Halfway through, he had clumps of muffin pinched precariously between his fingers. He was picking up stray blueberries off the seat and eating them.

People were staring. I wanted to help, to do something, but I didn't know what.

I had my phone to my ear now, working out the last minute details of our shuttle pickup. I had my other hand death-gripped around his pill case, which I was under strict orders to never let out of my sight.

As my dad gnawed his way further into the muffin's core, I noticed this older bald guy in a fleece jacket across from us stealing glances at the scene. I thought about telling him to mind his own business, but reconsidered given the absurdity of what was happening. I understood why he'd be compelled to look.

But I started to hate this random guy anyway.

There was nothing spectacular about him. He was bald with some prickly silver stubble covering his chin and an orange fleece pullover. He was just a guy, really.

But what stood out about this man, to me, was that he didn't have any food stains on his clothes.

He didn't have elastic shoelaces or drawstring pants. He didn't have hearing aids. He didn't have anyone with him to help him get on the plane without getting lost.

I started to hate him because I thought, this is who my dad was supposed to be.

My call finally ended and I hung up. At this point, I had seen enough of the muffin massacre and was ready to go get us a plate, some napkins, something. But I remembered I hadn't gotten us a preboarding pass yet and we'd be boarding any minute. My dad — not surprisingly — doesn't do well with people nipping at his heels, squeezing around him, crowding him, hurrying him. We needed to board before the rest of the passengers. It was one of the last obstacles between us and home.

At the ticketing desk, I kept glancing back as I talked to the agent.

“I'm traveling with my father who is, uh, he has… He's handicapped."

I never know how to describe it.

When it comes to Parkinson's, "handicapped" always seems to be both wildly conservative and entirely overly dramatic at the same time.

It doesn't come close to telling the whole story.

As we wrapped up the transaction at the counter, I caught my dad standing again from the corner of my eye.

Is he sifting through our bags? Is he going to wander off?"

As soon as I got our preboarding pass, I hurried back over to him.

He had, to my complete surprise, cleaned himself off pretty well with a stray napkin. He'd brushed the crumbs away from his shirt and pants. He'd wiped the seat clean, save for a few hangers-on in the crevice. And he had stuffed all the trash into the small white bag that the muffin came in.

In that moment, I got a glimpse of my dad. The real one.

The one who raised three kids and taught us how to throw a football, how to use a hammer, how to treat people. The one who, in another world, would have been leading me through the airport, reciting Civil War trivia as we walked. The one who, to an outsider, would have been just a guy.

The one who, to those who knew him, was far from just a guy.

He looked at me as I approached and said, "Are we ready to go home?"

For a second, it felt like we were already there.

We stood and waited to board, watching travelers deplane from the previous flight. We were mostly silent because no one ever wrote a handbook on how to ask your father if he's sure he doesn't need to use the restroom and then jump into shooting the shit about sports.

So it was easier to just say nothing.

But it was a comfortable silence. Maybe even a happy one. Because the catastrophe I had dreaded and been warned about and tried so hard to avoid, well, it ended up just being a particularly unwieldy muffin.

And all it took was a single napkin to wipe away any trace that anything had ever gone wrong.

If only for a second.