We're talking with local experts about local care and treatment for Parkinson's disease.

That's this week on Nevada Week.

♪♪♪ Support for Nevada Week is provided by Senator William H. Hernstadt and additional supporting sponsors.

(Kipp Ortenburger) Parkinson's disease affects nearly one million people in the United States and 6,700 people in Nevada.

Defined as a nervous system disease that affects a person's ability to control movement, symptoms of Parkinson's disease are extremely diverse.

There are multiple visible and invisible symptoms not only affecting movement, and no two people exhibit the same symptoms.

This means that Parkinson's disease can be a challenge to properly diagnose and also treat.

There is no cure for the disease, which progresses slowly and worsens over time, but there have been significant advancements in management and treatment.

We're going to discuss current protocols on this week's show.

Also, with Southern Nevada expected to grow by half a million people by 2050, coupled with a very large retiree population aging in the state already, the number of people with Parkinson's is sure to grow dramatically.

We'll discuss with our experts the capacity of our healthcare system and the very important role of persons with Parkinson's disease and also caregivers in future care, and of course in research advancements.

Please welcome Dr. Zoltan Mari, Parkinson's and movement disorders program director for the Cleveland Clinic Lou Ruvo Center for Brain Health; Dr. Charles Kamen, board certified neurologist for the Neurology Center of Las Vegas; Robert Cochrane, co-founder of Parkinson's Place Las Vegas, and Dr. Odi Oguh, staff neurologist for the Cleveland Clinic Lou Ruvo Center for Brain Health.

Dr. Mari, I want to ask you first in researching this topic, what struck me is just how unique this disease is from one person to another.

Symptoms are extremely diverse, and they range from something as basic as trouble sleeping to what we might consider more of a traditional symptom for Parkinson's, at least to the layperson, like a tremor.

What's key to successfully diagnosing this disease?

(Dr. Zoltan Mari) So the current diagnosis of Parkinson's disease is a clinical diagnosis.

Experts such as some of us on this panel called movement disorder neurologists or movement disorder specialists know how to apply certain clinical criteria based on history and based on exam findings, and when the patient meets those criteria, we say that they met the clinical diagnostic criteria.

There are actually more than one set of such criteria, and the most commonly used one is the so-called UK Brain Bank criteria.

There's also Movement Disorder Society or MDS criteria.

But that is how Parkinson's disease is diagnosed in practice, for the purposes of some studies, and broadly, that's how we understand how the diagnosis should be made.

However, there are some ways of going beyond just the clinical diagnosis.

There's also so-called prodromal states of Parkinson's, and the MDS diagnostic criteria includes some of those where somebody doesn't have to meet those clinical diagnostic criteria, but we know they are on track of developing Parkinson's disease later.

And finally, there are some confirmatory diagnostic tests that are being explored, and there is one that's already approved by the FDA for clinical application.

It's called the DaTscan, or ioflupane SPECT, in which we use an imaging of the brain and confirm our suspicion for Parkinson's disease.

-Dr. Kamen, I want to get your perspective too.

If you are an individual and you are potentially suffering from some symptoms, you go on a website and you start looking through some of the key symptoms for Parkinson's disease, and of course that then maybe leads to you getting some form of consultation or visiting your primary care physician.

First off, are there consistent indicators here symptomwise that are for the most concerned?

(Dr. Charles Kamen) I would say a unilateral, which is to say a one-sided resting tremor, is more consistent with Parkinson's than other conditions.

Unilateral again means one-sided, and resting means a tremor that's present at rest when you're not doing anything as opposed to reaching out and it gets worse when you're trying to do it.

That's a very basic way to describe it but, you know, if you have one-sided rest tremor and also a tremor that hasn't been there for 30 years with a slow, progressive, insidious progression but something that's kind of relatively new, that is more concerning for Parkinson's and should prompt a workup.

-Dr. Oguh, can we get some perspective on these nonmovement symptoms?

This might be a surprise to our audience here.

We are maybe so tuned in to the movement type of symptoms, what are some of the non-movement symptoms that we should be aware of?

(Dr. Odi Oguh) I think that perhaps, you know, talking about the pre-manifest or pre-dromole stages of Parkinson's, constipation is a big non-motor symptom, and typically patients with Parkinson's who get diagnosed with Parkinson's will have many years of constipation prior to their diagnosis.

Another non-motor symptom that we tend to see is sleep disturbances, particularly called REM sleep behavior, where patients sort of act out their dreams which could include talking, fighting, falling out of bed, and this can also be present many years prior to the diagnosis of Parkinson's.

We also have things like loss of sense of smell, which is also something very common in patients with Parkinson's where they lose their sense of smell over a long period of time.

So those are some of the pre-mortal manifestations of Parkinson's.

When we talk about non-motor manifestation, it could be a wide range from things like skin conditions to blood pressure changes to mood disorders from depression and anxiety.

Sometimes you may have cognitive changes, not to mention, but cognitive changes that we can see in patients with Parkinson's disease.

-Robert, I want to come to you.

I mean, we just heard from our specialists here some very complex tests and a number of symptoms you need to be aware of.

Let's go to though the diagnosis of a patient, patient and of course family members here, in just understanding the disease.

It seems like it could be just as big of a challenge as the diagnosis is here.

What's your take?

(Robert Cochrane) Yes.

Well, as someone who, you know, my father's been diagnosed for 20 years and now working with Parkinson's Place Las Vegas, it's the story we're missing constantly is what is the individualization, the individual manifest of the disease, and people need to come to terms with it.

What we often see is people denying they have it or people hiding that they have it.

The stigma factor with Parkinson's is a huge social issue.

There's loss of jobs, loss of income, because people think that they've been-- you know, they think they have a drinking problem or there's something else going on, and it leaves people with Parkinson's and their care partners, family and loved ones, in a terrible spot because they don't know what to do and they're terrified of the future, having seen, you know, nothing but end images.

So it's just so important that people get to understanding and accepting the diagnosis so they can get on to the quality of life management opportunities that can help them live and even thrive with Parkinson's.

-And what a great segue.

Dr. Mari, let's talk a little bit about the treatment, the therapy here.

First off, most basic question, with advancements of where we are with treatment and therapy now, a person with Parkinson's, can they live a relatively regular life?

-Thank you very much for that question, because this is on the minds of our patients.

One of the common questions we receive is how is that going to affect my longevity?

How is that going to affect my outlook on life and the future?

And I would like to start by saying that we have come a long way in the past half century or so since symptomatic treatments for Parkinson's disease have become available from this being a very disabling and life-shortening condition to something of a chronic condition that most people can live a productive life well after their diagnosis thanks to the great efficacy of the symptomatic treatments that we have.

Now, that's not to say that they will have a normal life, and as you mentioned, this is a progressive disease which gets worse over time, but generally speaking, it's a relatively slowly progressive disease, although as we discussed and Robert pointed out, the individual variability of the disease, the symptoms of what is disabling as well as the rate of progression can vary greatly from one person to another.

So overall the life expectancy is shortened still at this time by Parkinson's disease depending on which variant you have, depending on what age you develop it so it-- and by the way, when people look at mortality data and longevity, please remember that those data reflect something in the past.

Everything that is published and is available today that you can find as far as data is concerned reflects treatments that occurred maybe decades ago, and these treatments have improved substantially even in the past few years.

So I like to hit an optimistic tone here that if your treatment is optimized-- and it is complicated because it has to be individualized, you have to understand the best and newest treatments so it's not easy-- but if it is optimized, then there is a very good chance that your life will be relatively minimally affected by Parkinson's disease at least in the first several years of your disease.

-And Dr. Mari, let me stop you there.

Dr. Kamen, I want to come to you.

Just optimizing this care, being able to optimize it, what exactly does that pertain to?

Can you give us some insight in just, you know, the movement disorder specialists themselves?

Is this a bigger team effort?

Exactly how is treatment approached?

-It is definitely a team effort.

You know, in your preface to today's roundtable, you mentioned that Parkinson's is a neurologic condition, and that's technically true, it is a neurodegenerative disease, but you can also call it a full-body condition.

You know, it affects the vasculature, it affects the heart, it affects the skin as Dr. Oguh pointed out, it causes constipation and mood issues.

So, you know, a key part is identifying these issues and making sure that no un-met needs are going un-met.

So if a patient comes to you and they're psychotic because their, you know, neurotransmitters are not working properly because they have a neurodegenerative disease, you know, you got to get them the appropriate psychiatric care.

Likewise if a patient is, you know, having trouble with sleeping and falling out of bed and getting very disturbed at night, you want to make sure that, you know, that's being adequately addressed, whether it's you as a movement disorder specialist treating them or if it's a sleep specialist treating them.

But you want to make sure that these issues are being addressed, and that's where I think a movement disorder specialist is a particular utility because, you know, we see patients with Parkinson's on a daily basis so we're going to know what to look out for.

We're not just focusing on maybe what they're concerned about.

Maybe they're focused on the tremor, "they" being the patient, but we're asking some extra questions and looking under some rocks to see if there's something that's going on here that we can change and can help and thus improve the quality of life of our patients.

-Well of course as you already mentioned, persons with Parkinson's disease and caregivers represent the most vital contribution not only to their own care but advancements to care as well.

Now, our Nevada Week team had the opportunity to speak to Gwen Vaughn about both instances.

Take a look.

(Gwen Vaughn) My mother was my best friend my whole life.

She was young when she had my brother and I, so we sort of all grew up together.

She was the adventure mom, and she worked.

She was a marine biologist and an amazing woman.

At age 57, Gwen's mother developed some movement-related issues.

It began with a twitching hand and a bouncing leg.

And I was like, what is this?

What's going on here?

And she said well, I don't know.

I have an appointment when we get back from this trip.

And I said okay, and I kind of forgot about it honestly, the way kids do.

Approximately six months later, Gwen's mom called her with news.

She'd been diagnosed with Parkinson's disease.

Gwen committed to caring for her mother on her own.

I didn't think it would be half as hard as it had been.

I had no idea about the paperwork that's involved, the legal stuff, the powers of attorney, the trust, all of those things which should be your first step when you get a diagnosis.

The second thing that nobody tells you is that you can't do this alone.

After years of going it alone, Gwen found Las Vegas' Cleveland Clinic Lou Ruvo Center for Brain Health.

It is so special in that the people there are family, and that is a very special thing for any medical place.

And then the fact that they have most of the stuff there to get you your diagnosis quickly because the not knowing is really hard, and the fact that they are working on trials.

So there's a research component to Lou Ruvo, there's the patient component where-- plus when you get there, it's complete care.

That complete care extends to care partners who are so critical to patients' lives.

In 2020 Gwen's life was turned upside down again.

She too has been diagnosed with Parkinson's disease.

Now she is both a care partner and a patient, and she's applying the lessons she's learned to her own life.

I have learned that nobody's path is the same.

Everybody's journey is different.

I may or may not have dementia.

I may or may not be able to walk.

I may or may not-- you know, there's so many symptoms, and so many of them are not seen or known.

I have done a lot to help myself through this diagnosis.

I have taken the lessons I've learned through my mother, and I am living them fully.

-Well thank you Heather, and particularly thank you to Gwen for sharing.

Robert, I want to go to you.

I mean, such a sad experience, or I don't know-- I don't know how to put it into words.

I'm actually a little overcome with emotion hearing the story, but I want to bring it to a positive note here.

What an amazing opportunity to endow and bestow upon those that are maybe experiencing this disease for the first time, patients and caregivers, with the support and this knowledge that Gwen was talking about.

How important is that piece to this larger conversation?

-Well, the phrase I heard there and both Dr. Kamen say is quality of life.

That's really what we're looking for I think from a care partner or the people with Parkinson's standpoint.

I know early on in my dad's diagnosis, the focus was very much about the cure, and of course we always hope for the cure.

But from the perspective of the person with Parkinson's or the care partner, there's not a lot to do in that regard.

We, you know, wish well for the scientists and support as we can, but there's a responsibility really that the individuals have to take, the families have to take, to say how are we going to live well?

We can't just have a pill or a surgery and say, you know, doctor, save us.

We need there to be a real relationship both with the individual and what's going on and the family with what's going on so they can take the steps to say okay, this is what I have, and here's how I'm going to live well.

And this is where the opportunity comes in to say okay, I'm actually going to exercise for instance at a much increased rate, and some people get in the best shape of their lives who have Parkinson's.

Jimmy Choi, the American Ninja Warrior, is a great story of that.

A lot of other people heal relationships in their family recognizing oh, we're on kind of a shortened time path perhaps here, and we need to recognize this puts a little urgency in what is right now.

And again, by putting those things in place where a lot of us perhaps live in an autopilot mode, this is where the opportunity to thrive comes from, and it comes from, as Gwen mentioned, support at great places like of course Cleveland Clinic Lou Ruvo and all the various opportunities that are within that from the exercise to the social support groups and networks and getting involved in things like clinical trials too.

All that takes back the power to say the disease doesn't have me, right?

I may have the disease, but the disease doesn't have me.

-And Dr. Oguh, I want to get your perspective.

As Robert mentioned, the importance of clinical trials and research, maybe you can speak to that a little bit.

And I also want maybe to explore the role of a person with Parkinson's in this interdisciplinary team we've been talking about, a number of specialists that are involved in treating that patient and what their voice particularly means.

-So I think research is very important.

I don't think that without people with Parkinson's who have bestowed upon us or have the time to be involved in research, we would have the number of medications we currently have for treatment of Parkinson's disease, and also it fosters better understanding of the disease.

Even as an expert in movement disorder, we still have a lot to understand about the unique differences between patients who have Parkinson's, why patients may progress a little differently, and what are those factors that change or influence progression of Parkinson's disease?

So here at Lou Ruvo, we currently have a vast portfolio of research from observational research to interventional research for patients with Parkinson's disease, and it aids us in a far better understanding of Parkinson's disease.

And the voice of a Parkinson's patient is certainly very important.

You know, we do offer interdisciplinary care to Parkinson's.

As I mentioned, despite the motor symptoms of Parkinson's, you also have the non-motor symptoms of Parkinson's.

We need those addressed either by our neuropsychiatric team or neurocognitive team.

We have a behavioral health group as well.

We have physical therapy.

So all those things are so important in enhancing the voice of patients with Parkinson's disease.

I think that despite the advances in care, as Robert said quality of life is so important, and I think the interdisciplinary team fosters that, fosters a much better quality of life no matter how long patients live with Parkinson's disease.

-And Dr. Mari, I want to get your perspective on part of that interdisciplinary team.

We've already mentioned it's a critical part, the movement disorder specialists.

I want to make a note that at least by my research, there are five movement disorder specialists in Southern Nevada.

Three of them are on our panel right now.

What does this say about the need for more specialists in general in a state like Nevada?

-Thank you very much for that question.

I'd like to start by saying that what a movement disorder specialist is is basically somebody who is a neurologist, so they must have completed their medical school and general neurology residency training, and then after the residency training, they choose to study further in a so-called clinical fellowship which is specifically on movement disorders such as Parkinson's disease, but also essential tremor, ataxia, dystonia and many others.

So there are such fellowships, and basically the availability of movement disorder specialists comes down to the capacity of these fellowship training programs, and we can do better in improving that.

And I have wonderful news to share, which is we received some generous donation to start our own movement disorder fellowship program here, the first in Nevada, at the Ruvo Center, and Dr. Oguh and I will be the primary faculty and the director and co-director of this fellowship program, and we are hoping that will help with the shortage.

But it's very important that we all work together with the community, with general neurologists, because a lot of times they are able to help with basic needs, prescriptions and refills and tests that the patients need day to day, and I would like to envision a model in which we are working as a team.

-And if I can stop you there.

Dr. Kamen, we've got about a minute left.

I want to get your perspective too.

Let's talk about the broader healthcare system, and again when we're talking about an interdisciplinary team, we're talking about a multitude of specialists.

Let's talk about a center like the Neurology Center of Las Vegas.

What access do you have to those specialists?

-Well, before I answer your question, congratulations to Dr. Mari and Dr. Oguh on that new fellowship.

That'll make a big difference to the community, and hopefully we get several more movement specialists up here in the Las Vegas area.

As you were saying, Kipp, with regards to interdisciplinary care, I can't stress the need for how important it is.

We need to have-- most of our Parkinson's patients are going to require, you know, physical therapy to work on their balance.

Specifically there's a good one called BIG Therapy where they work on big movements and big strides and swinging of the arms while they're walking.

We want them getting appropriate care as well.

So it would be a neuropsychologist to evaluate for dementia, et cetera.

You know, we have those-- we have people who can do those evaluations for us.

We have neurosurgeons.

There are several here in Las Vegas who I've worked with and, you know, are able to do deep brain stimulation which is a very important part of Parkinson's disease.

We have relationships with GI specialists who can put in duodenal tube insertions where you can get a continuous flow of levodopa into the gut.

So, you know, we work with all kinds of different providers, both physicians and non-physicians alike who are able to, you know, form the care team, you know.

But care team also I should add, you know, involves the patient and their families.

-Well, thank you as always for joining us this week on Nevada Week.

We're going to continue this conversation online, so visit our website at vegaspbs.org/nevada-week for this continued conversation and for resources we've discussed on the show.

You can also always find us on social media at @nevadaweek.

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