>> When our communities need help, Blue Cross and Blue Shield companies step up with partnerships capable of preparing meals for thousands of families in need, because it's not just about health insurance.

We believe it's our responsibility to expand care to rural communities, protect our heroes with safety equipment, support local nonprofits.

These are our stories to help build stronger communities for the health of America.

>> "Second Opinion with Joan Lunden" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.

>> Parkinson's Disease is the fastest-growing neurological disorder in the world.

It affects nearly one million people in the United States and more than six million people worldwide.

Are there effective treatments or even a cure on the horizon?

We'll find out today as we discuss Parkinson's Disease.

Joining us is Dr. Lou Papa, a primary care physician from the University of Rochester Medical Center... >> You need a team.

This is one of those conditions that needs a comprehensive team.

It's a complex disease.

>> ...Dr. Rachel Dolhun, a movement disorder specialist and the vice president of Medical Communications at the Michael J.

Fox Foundation... >> Parkinson's causes a decrease of a brain chemical called dopamine that's responsible for normal movement.

So that's why we see all of these movement symptoms.

>> ...and Dr. Ray Dorsey, a neurologist and the director of the Center for Health and Technology at the University of Rochester.

>> So, while genetics are an important factor for a small minority of individuals, we think the overwhelming causes of Parkinson's Disease are likely environmental.

>> And Phyllis Allen, who is living with Parkinson's Disease.

>> And I notice when I would be walking down the driveway into her driveway, all of a sudden, my left hand would just start shaking uncontrollably by itself.

>> I'm Joan Lunden, and it's all coming up on "Second Opinion."

♪♪ Parkinson's Disease symptoms generally develop slowly over years, sometimes starting with a barely noticeable tremor in just one hand.

And while tremors are common in Parkinson's, the disease progression is unique to each person.

And, Phyllis -- I want to thank everybody for being here, but Phyllis, thank you so much for being here to tell us about what you're going through.

And I want to take it back to when you first noticed something was not right.

You were 65 years old.

That was about, what, four years ago?

Was it just the tremor in the hand that you noticed like I was just discussing?

>> In my left hand, exactly.

I would be -- I was a caregiver for my mom, and I would be -- and I live right next door to her, so I would go back and forth from my house when I would have to get some things done over here.

And I noticed when I would be walking down the driveway into her driveway, all of a sudden, my left hand would just start shaking uncontrollably by itself.

And I thought, "Oh, my God.

That's really weird."

And I just stopped it.

And I noticed that it got worse and worse, and I also worked in the ER.

And when I would be going to get and ambulance in the back, I noticed I would be stumbling over my feet, like I was dragging my foot and I wasn't picking it up.

And I said, "Something's wrong," and that's when I decided I better get checked.

>> So, take us to the day when you were helping your brother do some grocery shopping and you came back home.

What happened as you were getting out of the car?

>> Well, my brother has Parkinson's also, much worse than I do, and, um, I was -- He wanted to help with the groceries.

He could barely walk himself.

I said, "No, no, Richie, you just go in, and I'll get the groceries.

You go in your apartment."

So I thought -- I was quite sure that I picked my foot up to go over the curb as I was carrying his groceries, and I did not.

Caught my foot I guess, and I landed flat on my face and I was a mess.

I was cut everywhere from landing on the cement, and it was a fast down drop, and that was it.

Groceries went everywhere.

And I knew something was wrong.

I went to -- I went home and called my doctor.

He got me in the next day, and he did some tests -- and my primary doctor I went to -- and he went in and did some testing, and he just said, "I'm almost sure you've got Parkinson's."

>> What did he have you do?

>> He had me walking in the hall.

He had me touch my nose.

He had me look in different ways and see how my eye gait was.

And, um, all kinds of tests like that.

Just physical tests.

Not anything blood work or anything like that.

>> So, Lou, I want to turn to you, because if she had come into your office and you heard these symptoms, what would you want to know from her?

>> So, we'd want to know how long it's been going on.

The tremor is a big signal to me.

And we'd want to make sure nothing else is being affected neurologically.

We want to make sure it's not one side versus the other, there's not any speech or swallowing or vision problems.

And I would do the same thing that her primary care doctor did.

There's a battery of tests that you can do to see if it fits with Parkinson's.

So you very often have them walk, and a lot of times they do fall because they kind of lose the ability to kind of dramatically have their gait like we do.

They tend to shuffle.

So they're not as smooth in navigating changes in the surface, and that's why they fall.

I'd have them write, because their writing will change.

Very often, if you look at their writing years ago till now, it gets smaller and smaller.

>> Oh, really?

Okay.

>> And the tremor is very -- she gave a very good description of the tremor.

It's the type of tremor that gets worse when you're not paying attention to it... and you can make it stop if you think about it.

First there's other tremors when people pick up a cup.

You know, kind of an essential tremor.

It's more intentional.

And it's a slow -- we call it a pill-rolling tremor that you have that's kind of classic.

And very often, when you have them walk, you can see that gait, but you'll also see there's a decreased arm swing.

Most of us when we walk, we have that little bit of a jaunt, you know, a swing of our arms.

There's a decrease in the swing of the arms, and very often you can make the diagnosis entirely clinically.

There's blood tests, and additional tests may help rule out other things or rule in other things, but it's really a clinical diagnosis.

>> I just can't -- I just have to ask you, Phyllis, when you heard those words, like, "I'm 100% sure that you have Parkinson's" -- and as you say, your brother had is.

>> Yes.

>> What was your thought?

What went through your head?

What did you -- How did you take that news?

>> I didn't take it well because my brother ended up in a nursing home in two years.

And he got me right in with a neurologist.

I saw him on a Thursday.

He got me right in with a neurologist on Monday.

She was absolutely wonderful.

I just loved her.

She put me on Azilect.

I guess at the time was a newer type of Parkinson's medication where you weren't taking carbidopa like three, four times a day.

It was once a day.

Easy, quick little pill and I was done.

And it did help immensely, and I'm still on just the same dose that I started four years ago.

>> Oh, okay.

>> Yeah, so I think that's a really big deal.

Um, I was -- I was -- In fact, he left the room, and then he came back because I was still in there and I was crying.

He came over, gave me a hug.

He goes, "You'll be alright.

I'm gonna put you in good hands."

>> Before we talk to much about treatment, I want to turn it to Dr. Dolhun, because what's happening in the body?

What is Parkinson's Disease?

>> Yeah, not a simple question to answer for sure.

It's a complex movement disorder, and we call it a movement disorder because of all of the things Phyllis was describing.

The tremor, stiffness, slowness, walking and balance problems -- all of these movement symptoms that we can see.

And these are caused because Parkinson's causes a decrease of a brain chemical called dopamine that's responsible for normal movement.

So that's why we see all of these movement symptoms.

But an important thing to remember about Parkinson's is that it's also a non-movement syndrome.

Sleep problems, mood changes, constipation, and other digestion symptoms that can happen a long with Parkinson's oftentimes even before the diagnosis that when people get a diagnosis, they have tremor, they have walking changes that eventually bring them to the doctor, they'll say, "Oh, gosh, now I realize that I've had constipation for so many years" or "I've been acting out my dreams or having these strange sleep problems," or "I've been depressed for so long."

And then we kind of put two and two together, that these have been happening for so long and are actually part of Parkinson's.

>> I just wanted to ask one thing, I mean, both the brother and sister have it, so I'm assuming there's a genetic component here.

>> So, about 15% of people are like Ms. Allen and have a family history of Parkinson's Disease, but 85%, the majority of people, have no family history of the disease.

So while genetics are an important factor for a small minority of individuals, we think the overwhelming causes of Parkinson's Disease are likely environmental.

>> Yeah, and to add onto that, so just as Ray said, environment and genetics, we think it's this kind of complex combination of factors that contribute to causing Parkinson's.

But as you mentioned at the top of the show, it's the fastest growing diagnosis, and that's because aging is a big risk factor as our population is aging.

So the diagnoses are increasing because of our aging population as well.

>> But it makes me immediately say if things are -- if it's growing, what's the one element that might be changing?

It seems to me it would be our environment.

>> Exactly right.

So, it's growing even faster than aging would account for by itself.

Parkinson's Disease was first described by Dr. Parkinson in 1817 in London.

And what's going on in 1817 in London?

It's the height of the Industrial Revolution in England, its capital.

And the London Fog had little to do with weather and everything to do with air pollution.

You couldn't even see across the street.

And since that time, numerous factors tied to the Industrial Revolution, including air pollution, heavy metals, pesticides and industrial solvents have all been linked to the disease.

>> So, statistically, then, would we see more farmers who deal with pesticides all the time, that they would be more apt to get this?

>> Not only statistically do we, we actually do.

So, studies in France, studies in Canada, studies in the United States have all consistently identified that farmers and those living in rural areas are at 50% to 150% increased risk of developing Parkinson's Disease compared to those who don't live in those areas.

>> Wow, and Dr. Dolhun, are there different kinds of Parkinson's, or just differences in the severity or the progression, I guess, of one's Parkinson's?

>> So, kind of both.

So, as you mentioned, there is a difference in the progression.

So, very individualized disease, difference in symptoms.

So not everybody has a tremor.

Not everybody has walking and balance problems.

Not everybody has all of those non-movement symptoms that I mentioned.

And everybody changes at a different rate with Parkinson's, even Phyllis mentioned that her brother had a very different course than she did.

And then there are different subtypes of Parkinson's that our research is telling us more about and we're learning more about all the time.

There are some people who have much more tremor.

There are some people who have much more walking and balance problems.

But as we're learning more about this, we're understanding more about the sort of cellular and mechanistic differences of this.

>> And so besides toxins, the environment, and the hereditary, the genetics, as I understand it, men are more likely to get this than women?

>> That's right.

Men, as we understand it, are about one and a half times more likely to get Parkinson's than women.

>> And so there may be some protective effects of estrogen, but men are more likely to be farmers, men are more likely to be applying pesticides, men are more likely to be welders, men are more likely to be engaged in occupations that are tied to the environmental risk factors known to contribute to Parkinson's Disease.

>> So it's hard to tell which is at play -- really at play there.

>> Well, I think it's clear that there's a clear environmental component and it's clear that men are more engaged in these environmental activities.

Just, you know, farmers -- more men are farmers than women, more likely to be working with pesticides and more likely to develop Parkinson's Disease.

>> Well, certainly we can ask Phyllis.

Tell us a little bit about your brother's Parkinson's, because it will really let the audience understand how different two people with the same disease, how different you experience it.

>> My brother was first diagnosed, and it was probably two years before mine.

You could just see him deteriorate.

He would freeze in his steps.

He would -- He would be able to move, and then all of a sudden he wasn't able to move.

And like I said, he was in a nursing home within two years.

And he's still in the nursing home.

They've given him -- if he's lucky -- another year to live.

>> Wow.

What do we know, Dr. Dolhun, about treatments?

>> So, Phyllis -- both of the medications that Phyllis mentioned are for the movement symptoms of Parkinson's.

Carbidopa-Levodopa is a medication -- the brand name's Sinemet.

So, many people who have Parkinson's or have a family member who has Parkinson's will be very familiar with that medication.

It's been around for a very long time.

It's a very good medication to treat the movement symptoms of Parkinson's, very effective.

And there are many other medications.

The other one Phyllis mentioned, Azilect or rasagiline, also treats the movement symptoms.

We've got many others.

We're very good at treating the movement symptoms of Parkinson's, but these medications have limitations.

They don't treat all of the symptoms of Parkinson's.

They can cause complications, especially in the long run.

And so there's a lot of research ongoing at optimizing these medications, preventing some of these complications that can happen.

And also, I mentioned before, getting at some of those non-movement symptoms that we're not as good at treating, I should also go back to the walking and balance problems that Phyllis mentioned for both her and her brother -- we're not as good at treating those right now.

Those medications don't adequately treat those.

Even our surgery -- we have a surgery for Parkinson's called Deep Brain Stimulation -- that doesn't do as good of a job at treating walking and balance problems.

And so there's a lot of ongoing research at treating those symptoms much better and at optimizing our current treatments.

>> Do we know, Dr. Dorsey, what causes -- as we learn more, does it help to tell us what causes it?

>> So, as Dr. Dolhun alluded to, there are genetic and there are environmental causes, and we've known for 20 years that environmental factors are more important that genetic causes.

But for some individuals, genetic causes are important.

There are genes called LRRK2 and another gene called GBA that are important contributors to Parkinson's Disease.

But we know that there are also environmental factors -- pesticides like paraquat, industrial solvents like trichloroethylene, air pollution and heavy metals that are all linked to the disease.

And as Dr. Dolhun indicated, many of these environmental factors, especially the pesticides, interact with these genetic factors and can accelerate the loss of nerve cells that are responsible for causing Parkinson's Disease.

>> I heard you refer to Parkinson's Disease as a manmade disease.

>> Yeah, so Dr. Bill Langston posited this question 20 years ago -- is Parkinson's Disease truly a manmade disease, just like much of lung cancer is manmade in terms of being related to cigarettes?

And we know that there are environmental factors that are contributing to this disease.

Paraquat, for example, has been considered the most toxic herbicide ever created.

32 countries, including China, have banned it.

Use in the United States is not only permitted, it's more than doubled over the last 10 years, more than tripled over the last 25 years.

The EPA's proposed banning paraquat, but it has yet to do so.

We know what many of the factors are that are contributing to this disease -- paraquat, pesticides, industrial solvents.

We have yet to manage to have the courage and the will to ban these pesticides, ban these solvents.

>> And one of the areas -- You know, the Michael J.

Fox Foundation, our mission is to cure Parkinson's.

And as we're focused on that mission, is to improve the lives of people living with Parkinson's today.

And as I was saying, you know, to improve our medications that are pretty good, but we need to get better.

And on that aim, we have other things that we do.

We connect people with research, we educate them about how they can get involved and understand their role in research, but aligned with that, we also have an advocacy arm where people can understand public policy, how research, how they can advocate for more research funding and research funding and policies that affect research funding.

And so on that, we actually advocated for this ban on paraquat that Ray is speaking about.

And so many of our advocates e-mailed, Tweeted their Congress members to push for this ban on paraquat.

So that is an active area of focus for us and policy work for us.

>> When -- We've talked a lot about what happens, you know, to people as this disease progresses.

What actually happens when you get into the, I guess, more advanced stages of it?

>> So, on average, an individual with Parkinson's live 15 to 20 years.

It's highly variable, as Ms. Allen was indicating.

As the disease progresses, both the motor and non-motor features of the disease worsen.

People get slower.

People develop more progressive difficulty walking, more falls.

They can develop dementia and cognitive impairment later in the disease.

They can develop hallucinations and psychosis.

One quarter of Medicare beneficiaries with Parkinson's Disease reside in nursing homes.

This is a leading source of disability.

It's the 14th leading cause of death in the United States.

We need to take action to not only help people like Ms. Allen, but we need to take action to prevent people like you and Dr. Papa and me from ever developing Parkinson's Disease.

>> So, you'll see very often, as patients get older, it'll start to affect their breathing, not have the ability to take as deep a breath.

There's that same rigidity in their chest wall.

They have microaspiration, cause difficulty with pneumonia breathing.

And the biggest concern is that loss of mobility, that loss of independence that they have as they go on.

And as was alluded to, the drugs work, but very often they have a limited time frame.

You end up adjusting to drugs and you'll be on multiple doses over the course, then it becomes a lot to manage.

>> So, Dr. Dolhun mentioned medications and surgeries.

We would be remiss if we didn't mention exercise.

Exercise -- Vigorous exercise in your 40s, 50s and 60s can decrease your risk of ever developing Parkinson's Disease, the equivalent to three and a half to four hours of vigorous exercise like running and swimming.

And then for people with Parkinson's Disease, exercise is incredibly helpful.

I routinely recommend that patients exercise at least an hour a day if they can, and it may be that exercise may change the course of Parkinson's Disease.

It can release growth factors in the brain that protect the nerve cells that are being damaged.

>> As you said, that proactive approach is important, the exercise, and things to mitigate and reduce your risk for falls.

I mean, that's a big factor in adding to the disability on top of the Parkinson's.

If you fracture your skull or your fracture your hip, because they very often lose the ability to bring their arms forward, so they have a lot more trauma.

So that's a difficult discussion, you know, when do you need to do something to have an assistive device so that you reduce your risk for falling.

All these non-pharmacologic things are probably as important as the pharmacologic interventions.

>> And as a primary care physician, I mean, how do you help just support and help people navigate through these very tough different stages, and the spouses and the family, as well as the patient?

>> And this, you know, this is a lot of stuff we talk over and over again, Joan, that's -- you need a team.

This is one of those conditions that needs a comprehensive team.

It's a complex disease.

It's a rapidly evolving team.

You know, not everybody has access to that, but having a specialist that's involved, having a primary care doctor that's involved that you can have, you know, the necessary responsiveness, because things happen very quickly.

You know, the Parkinson's patients require a lot of intervention, a lot of care, a lot of interaction in a non-office setting to reduce their risk for hospitalization.

>> How is technology used as, you know, as a neurologist and a researcher?

>> So, the mission of our center is to enable anyone anywhere to receive care and to enable anyone anywhere to participate in research.

And the way to do that is through technology.

So, you can use video conferencing software to connect to patients directly in their homes, and people, when they're in their home environment, are more comfortable and they actually share sometimes more information -- sometimes more information than we need... [ Laughter ] ...to know, and they do it in their home environment.

And we should, as clinicians, connect to patients on their terms instead of asking patients to come see us on our terms.

>> Yeah.

>> We should fundamentally see patients on their terms, and this is just one way for us to do so.

>> And especially patients like this who have difficulty moving and getting around.

It -- You're right, it's kind of ironic that they would be asked to come to you.

>> Yes, and for the vast majority of cases you can do this.

For some people, you want to see them in person, and we mentioned surgical treatments, which obviously we'd need in-person evaluation.

>> Phyllis, are there lifestyle changes and changes to your home that you've made and even to your diet, everything, just to stay as healthy as you can as long as you can?

>> Yeah, absolutely.

I don't eat -- We don't have any pre-prepared foods.

I try to eat as much organic as I can, as we can.

And mostly vegetables, a protein, and not a lot of junk food.

I try to stay completely away from sugar 'cause I think sugar reacts to my Parkinson's in a negative way where my tremors seem to be a little more prevalent.

And I try to do everything that I'm supposed to be doing.

I exercise every day.

I always went to the gym every day until this pandemic.

I do have a bike here.

I bike every day.

>> Wow, alright.

>> And I did a seminar on boxing for Parkinson's, and they had us boxing and giving us commands of what hand to go and high or low, and counting back by three from 100 at the same time.

>> You have all doctors -- Phyllis, the doctors here with me in the room, they're literally -- they're giving you applause because you're doing all the right things.

>> Thank you.

>> Dr. Dolhun, what's on the horizon with Parkinson's as far as treatments and, hopefully, a cure?

>> As I mentioned, there is so much in the pipeline that could potentially slow or stop the progression of this disease.

There are potential therapies that are targeting those genetic links to Parkinson's.

There are other drugs that are looking at inflammation and there are cell replacement, so stem cells are a thing people ask about all the time.

Those are in development.

So there are a myriad of potential therapies in phase 2, which is the middle phase of clinical trial development.

They're moving forward.

There's a lot to be hopeful about.

And as I said, in tandem, there are new symptomatic therapies to treat the movement symptoms and the non-movement symptoms.

We also have new technology, so as we're working on the medication side of things, we're marrying technologies.

So things like socks that would vibrate and get you moving if you're stuck.

Phyllis was mentioning her brother kind of got stuck.

So, yeah, looking at things like that to be more creative.

And, you know, just a lot across the pipeline of research and development that we can really be hopeful and optimistic about.

>> And, Phyllis, what advice would you want to give to somebody who's newly diagnosed with this disease?

>> Just keep moving.

You have to exercise.

You have to eat clean, and you have to get sleep.

>> Huh.

Sleep.

And I'm glad you brought that up, 'cause all the doctors around here -- that's the one that everybody says.

And sleep is so important and for how it kind of cleans out your brain, so to speak, when you're in deep sleep.

Phyllis, we really thank you so much for sharing your personal story.

And I know your brother is not doing as well as you are, so we'll be thinking about you and your family.

>> Thank you so much.

>> I want to thank all of the doctors on this panel for being here today, and of course I want to thank you for watching.

You can find out more information about this series at secondopinion-tv.org.

You can also follow us on Facebook and on YouTube, where you can watch today's episode and much more.

But from all of us here at "Second Opinion," we encourage you to take charge of your healthcare.

I'm Joan Lunden.

Be well.

♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ >> When our communities need help, Blue Cross and Blue Shield companies step up with partnerships capable of preparing meals for thousands of families in need, because it's not just about health insurance.

We believe it's our responsibility to expand care to rural communities, protect our heroes with safety equipment, support local nonprofits.

These are our stories to help build stronger communities for the health of America.

>> "Second Opinion with Joan Lunden" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.

♪♪