(upbeat music) - [Narrator] The region's premier medical information program, "Call the Doctor".

- Parkinson's Disease affects the nervous system, and therefore, the parts of the body controlled by the nervous system.

Symptoms can start slowly, but the disease is progressive, and there is no cure.

We wanted to ask the experts to explain what happens when someone has Parkinson's disease, and maybe more importantly, some of the best ways to live with it.

Parkinson's disease on this episode of "Call the Doctor."

Hello, we are so glad you are with us for this season, and this episode of "Call the Doctor."

Tonight we're talking about Parkinson's disease, and I would love to get right to tonight's panelists.

We have two panelists tonight who are gonna help us wade through this very large topic.

I'd love if you could introduce yourselves, and tell people where to find you.

- Hi, I'm Nicole Lipinski.

I'm an RN and the Director of the Geriatric Service Line at the Wright Center for Community Health.

- Great.

- Glad to be here today.

- Thanks, Nicole.

And what about you?

- I'm Kristina Dorkoski, I am the Senior Neurologic Physical Therapist at Allied Services Science Heinz Rehab in Wilkes Barre.

I also run our Parkinson's support group.

- I'd love to talk about that too when we get a little bit further into this.

Thank you both for joining us.

I would like to start just with the basic question, what is Parkinson's disease?

What are we talking about?

And I know it affects so many parts of the body, but I'll go ahead and give that one to you.

What is it?

- Sure, it's considered a neurodegenerative disease, meaning that it affects your nervous system, and you have degeneration over time of some nervous system cells.

So primarily it's cells that produce dopamine, so dopamine is a feel-good hormone in your body, it sort of like gives you a reward for different things that you do, like feeling good about moving around, and talking with other people and enjoying life.

So you get a depletion of that dopamine over time with Parkinson's and that can cause some slowness of movement, some rigidity, some other symptoms.

- How common is it?

Is it quite common around here, Nicole, would you say?

- It is and patients over 65, about 2% of the patients in this area would have it, and this area's more populated with patients that are 65 and older.

So we do see it as a hotspot in this area.

- Do you see Parkinson's in young people, as well?

- Yes, you can.

- About how, I mean, tell me a little bit about that.

What is typically normal, or what is considered a little bit alarming?

- So I would say ages 50 to 80, we'll see Parkinson's disease.

- But not usually before then?

- Sometimes.

- Yeah, they can have young onset Parkinson's disease.

There are even cases as young as teenagers or in their 20s.

But for the most part you're considered to have young onset Parkinson's disease if you're diagnosed before age 55.

- Before 55.

You had said something about how, we were talking about whether it's common in this area or not and it does seem to be, although I suppose we're not quite sure why.

What's your thought on that?

- Yeah, there's actually a whole book on this right now.

Several different physicians who specialize in Parkinson's have created a book called "Ending Parkinson's Disease" and they speculate on the reasons why.

What we can see from conglomeration of the Medicare data is that we live in the part of the PD belt.

So just like there's a belt for diabetes in the south, we're part of the Parkinson's belt unfortunately in the northeast.

Some of the reasons for that that they think may be causing it, a heavier area of agriculture.

So some of the pesticides that are used.

Some of the manufacturing and industry, certain chemicals that can be in our water and things like that.

Environmental exposures, basically.

- Is it ever something that you are just born with?

Is it ever something that is, is there a genetic component to it?

- There can be a genetic component.

So some people do have a gene that predisposes them to Parkinson's or they have genetic mutations, but that is actually less common.

I wanna say like 10 or 20%, don't quote me, but it is pretty low.

So just because you have the gene doesn't mean that you'll develop the disease and you could have no gene or genetic mutation at all and develop Parkinson's.

- What are some of the very first symptoms that someone might notice if they have Parkinson's, Nicole.

- Tremors, rigidity, little bit later falls.

- Falls.

Will this all come on kind of all at once or is this something that people will start to experience little by little.

- Little by little and they should see their doctor as soon as they start to notice these things.

- It seems like there could be a lot of misunderstanding about it then, 'cause those things could be other issues.

Do you ever find that there's confusion when people first come to you?

- Absolutely, and they're kind of as a stigma, so they don't wanna go see the doctor, so they really should see their doctor as soon as they notice something's changing in their body.

- Why a stigma?

- Well, I think that they don't want to think that there's something wrong with them.

And they know the disease.

Famous people have the disease like Michael J.

Fox and they don't wanna go down that road and worry that that's what's happening to them.

So they ignore the symptoms and ignoring the symptoms is not gonna make it go away.

The best thing to do is to deal with the symptoms that you have and get help.

- This might be kind of a silly question, but when you see that a celebrity or someone well known has Parkinson's, does that help you as a provider or do you think, oh no, now people have this version of Parkinson's.

- I don't know that it helps.

Do you think it helps?

- I was just curious about that.

- Yeah, in some cases it brings more light to things.

So for example, there was a famous Olympic cyclist, Davis Finney who got Parkinson's and he started his own foundation.

His foundation is a great resource for people with Parkinson's for living well today with the disease.

The Michael J.

Fox Foundation has focused a lot more on like looking for a cure and both are great objectives, but for people who are already living with Parkinson's and their care partners, Davis Finney Foundation does provide a lot of resources.

So him getting that disease is unfortunate, but he's such a strong advocate and leads so many people to a better quality of life as a result.

- Yes, the disease itself for the patient and the caregiver is very difficult, especially when they're looking for resources and they don't know where to turn.

- We talked a little bit about some of the more common symptoms.

What are some things that you see?

- Right, so slowness of movements, small movements, a lack of awareness sort of, of where your body is in space.

So people might notice things like they're bumping into corners or cutting corners a little bit or they always trip on that same part of the coffee table.

But more than just these motor symptoms, you know, most people think that Parkinson's is, everyone has a tremor, but up to 20% of people don't have a tremor.

The smallness movement, the slowness of movement and non-motor symptoms, things like depression, anxiety, constipation, sleep disorders, those are the things that can really impact quality of life.

- But I bet that the people who are experiencing that don't get help right away because that looks like a lot of other things.

- It does and those symptoms, those non-motor symptoms, the ones that I just mentioned, they can be present up to 20 years before people present with the motor symptoms like the tremor and the smallness and slowness of movement.

- Do you each find that, that by the time people get to you, it's almost as though they have, at least some patients have gotten used to it a little more?

I mean I know it's a progressive disease, but I wonder if there are people who say, I just thought I got clumsier or you know, what are some of the things that you hear about what people might have missed before they ended up getting help?

- Sometimes I feel that the patients are exhausted and they're happy to find some answers and some resources.

I feel that there's caregivers that need respite and need support, so they're happy to actually get some kind of a diagnosis and they're happy to get physical therapy and find answers.

- I think initially a lot of people attribute the symptoms they're having to aging.

Like we all have aging brains and aging bodies.

So if you feel a little stiffer or your back hurts, you know, you just start thinking of getting old.

If you're dropping things or fumbling with your buttons a little bit, you think, eh, it's just a little arthritis or I'm just getting older.

But in a lot of cases it's really these other early signs of Parkinson's that are being missed.

- Correct.

And I think that exercise is key.

So when they have physical therapy early on, it's best for them.

So if if we're missing the diagnosis because they're not coming to the doctors or they're thinking like you said, that it's just a little getting older, then they're not doing themselves any good and they really need to get to the doctor for that diagnosis.

- You, I think it was it, you used the word trap, someone used the.

- Oh TRAP.

- TRAP and what might people remember?

I mean I think that's, I think those devices are easy to remember.

Yeah, I like using a lot of those.

So TRAP stands for tremor, rigidity, akinesia, which is a lack of movement.

So people with Parkinson's don't blink as much, they don't swallow as much, they don't shift their weight as much in the chair.

And then postural instability is the last one.

So postural instability is some trouble with balance, although that in regular Parkinson's disease, that occurs a little bit later on in staging.

- We talked a little bit about the the stages and I would love to know only because one of the first things you said, Nicole, was I really wish people would would come when they're an earlier stage we can help more.

I'll give you know each of you, both of you, you can explain what the stages are and maybe what you see in patients at each of those stages.

- You can start, go ahead.

- Sure, so traditionally there were five stages of Parkinson's.

it's called the Hoehn and Yahr scale.

There's a lot of debate as to whether or not it's still relevant, whether we should really still be using it, but it's still used a lot to describe subjects in research studies.

So it's still out there.

Essentially in the first stage you have signs on one side of your body and then by stage two you have signs on both sides of your body.

By stage three you have trouble with your balance.

By stage four you're probably using a device like a walker or a cane or you might need a little bit of help for moving around.

And then stage five, I say used to be, because it doesn't have to be this way anymore.

Stage five was that you were wheelchair bound or requiring full-time caregiving.

- You couldn't function on your own.

- Right, yeah.

That you required full-time nursing care.

- And when do you typically, so I understand that not everyone uses the stages or perhaps that that's an outdated mode.

- Yeah.

- I think that's what you just said, but at what stage we'll use them for tonight?

Where do you usually see people when they come to you?

Are they already very far gone typically?

- It has changed so much and I'd love to hear your perspective on this too, but when I first started doing therapy over 20 years ago, the paradigm was the doctors, the physicians wouldn't send anybody to physical therapy until someone had already fallen and sustained a brain bleed or they were falling on a regular basis, till they had swallowing problems was when they would send them to speech therapy rather than sending them earlier when they can work on so many cognitive strategies to get better.

So it used to be once people fell and had an injury, like a hip fracture, so they were already in stage four.

So now it's getting much better both in terms of people getting diagnosed earlier because sometimes because of the celebrity input and better access to healthcare.

But if they get diagnosed earlier, then we see them earlier.

Doctors are getting more aware that they should be sent earlier to us.

So I advocate for people to be seen by a physical therapist from time of diagnosis and for regular bouts of therapy, every six months or so is typically our paradigm.

We call it a dental model.

You go to the dentist regardless of whether you know you have a cavity, right?

So you go every six months, you get your teeth cleaned and if you get a clean bill of health, no cavities, great, great, right?

But if there's a problem, then they can identify that with tools that you don't have and they can give you the care that you need.

It's the same thing with us.

So physical therapists are movement experts.

So we're used to watching people move all day long and pick apart what's wrong with their movements or where the problem is or where the challenge is.

So if we see them early and often, we can do standardized tests and measures, take a baseline, see them over time, know if they're slipping up a little bit, you know, so it doesn't always have to be this long-term commitment for therapy, but they need to at least see us on a regular basis.

- That's interesting.

I just thought of something when you said that, and I'm gonna get to you in a minute, but I was thinking that someone's say partner or children or neighbor might be a little bit more used to someone moving in a certain way and you might instantly be able to say that's not right.

- 2000%, 2000%.

(laughs) - I betcha people might maybe they don't wanna think anything is wrong.

But to the point we were talking about earlier, where do you usually see people on those stages and does it make a difference in how you choose to treat them?

- Absolutely, so either we see somebody early on, like you said, because they have been going to the doctor all along and the doctor notices the change or the person they live with notices the change or we see them at the stage where they're falling.

So it's either or.

And I think that we're getting better though at sending people early for physical therapy.

- There's.

- Because exercise is key.

- Isn't exercise always key?

(laughter) So, okay, let's go with that.

You cannot exercise away Parkinson's, but what does exercise do for you?

- Well it helps with balance definitely and it helps with the muscles and the rigidity.

So it's definitely important.

- So it can help your way of life if not the disease itself.

- Yes.

People who exercise the minimum of three days per week are shown to have a higher quality of life and a slower progression of their motor symptoms.

So in animals, like in rodent models of Parkinson's, we know that it actually changes their brain to where it slows down the progression of rodent Parkinson's.

In humans, we can't really find that out without popping open your brains.

And I don't think anybody wants to sign up for that, but we do have indirect evidence that exercise actually changes your brain in people with Parkinson's as well as in well people who are aging.

So some examples of how your brain can change from exercise in Parkinson's are you can get increased vascularity.

So if you have better blood flow to the different key areas of your brain that you need, you're gonna be firing your nerve cells a lot better.

And those nerve cells make better connections with each other.

So for example, the parts that are more damaged by Parkinson's can make connections to areas that are working a little bit better.

So these are just some of the ways that it can happen.

Exercise changes some of the hormones and the different chemicals that your brain excretes.

Makes better use of the dopamine that people still have.

It makes their medicine work better.

So if they're on dopamine replacement therapy, levodopa is what they would be on.

It makes that work better.

It makes them more efficient at using it in their brain.

- Just kind of a no-brainer it sounds like really?

- Yeah, it really is.

- Use that term, but.

- Yeah, and it's free.

(laughter) - Yeah, right.

- It can be free.

No side effects really from exercise other than some minor soreness sometimes.

- You mentioned progression.

Is there a progression that typically follows?

Is every patient different?

Will the symptoms kind of go in the same order or is it really just depending on who this person is and how they're treating it?

Nicole, what do you think about that?

- It's different for every patient.

If they choose to exercise, it's going to be different than the person that chooses not to exercise.

- The progression will be faster.

- Right.

- Yeah.

What about you?

What do you think that progression, I mean, I don't wanna put a time on it, but you could have Michael J.

Fox for instance has had Parkinson's for a very long time.

- Oh, absolutely.

- So people are living with it successfully.

- Yeah, I always say people, they don't die from Parkinson's, they die with Parkinson's.

So as I said before, we all have aging brains and bodies.

So they may have the same issues that other people who are aging have.

The things that they're more prone to get are cardiovascular disease because if they don't feel like moving around and they're not moving around as much, they're more prone to heart problems.

- And pneumonia.

- And pneumonia is another key thing that can happen and some of that's with rigidity.

I mean they don't even breathe as big as you or I would.

So they're not getting quite the lung expansion in there either.

- They might have problems swallowing.

- Yeah, so problems with swallowing can cause aspiration pneumonia as well.

But in general, like to your point about progression.

Progression is, as Nicole said, totally different for different people.

I do find that my exercisers do the best, you know, long term.

But Parkinson's is such a heterogeneous disease.

Like people have such different symptoms.

So for example, women with Parkinson's may have a little bit more non-motor symptoms, whereas the men may be more motor symptom dominant.

So there are so many differences between people just based on their own genetics and activities, you know.

But generally it's gonna be something people are living with for a very long time.

- Nicole, I know you are very involved in the Alzheimer's dementia area and that program at the Wright Center.

What's the connection there between those things and Parkinson's disease?

- So the Wright Center has a UCLA approach to Alzheimer's and dementia.

And the dementia portion of that is that the Parkinson's patient may develop dementia in the first 10 years.

After the first year, there may be some mild cognitive changes in the patient.

So we do have a program where we help the patient and the caregiver.

It's a caregiver patient dyad program where we offer community health workers and case workers for the patient and the caregiver to give them resources from the community and help them find respite for the caregiver.

I think it's very important because not only is the disease hard on the patient, it's hard on the caregiver.

So they need those resources.

- What kind of things do you see in Parkinson's caregivers?

- Fatigue, - Because I think that's a really good point to get onto tonight.

So fatigue, but what else are they looking for when they come to you?

- They're looking for help with like how do we change things in the house if need things need to be changed?

What's a resource like how can I get outta the house and leave my loved one safe in the home.

So they need respite.

So we look at all of those things.

- Is someone more likely to develop Parkinson's if they have Alzheimer's dementia?

Or it's just that you need to pay special attention to someone.

- If somebody has Parkinson's, they may develop dementia.

- I see.

Okay.

Other way around?

- Concentration problems, memory problems.

- And what's the team approach there?

I know that you work very hard to kind of get someone their entire team there.

- Right, so our care manager would help to make sure that they're going to their primary care appointments, making sure that they have a movement specialist or a neurologist, making sure they're getting physical therapy and when they plateau at physical therapy, that it starts again when they're eligible to start.

Because that does happen.

And then there's a point in between the physical therapy and the next physical therapy session where we wanna make sure that they're exercising, that they're doing either boxing or they're doing dance therapy or they're doing something so that they're not just staying home and doing nothing.

- I've heard of boxing as a treatment.

- Yes.

- That's just a great movement.

Just getting people moving or is there something specific with that boxing movement?

- So the exercise that's shown to have the greatest benefit for Parkinson's so far in the research is high intensity aerobic training, which is, you know, when I say high intensity, people are a little freaked out I think.

(laughter) But what it really means is working beyond what you would self-select.

So if you're in a group of people right, and there's a lot of camaraderie 'cause you're working out with other people with the same problem as you and you have something you're punching, right, you're gonna go a little harder than if you were just doing exercises like in the air.

Right?

- Right.

So it, I think a lot of it is, it's the intensity piece with the group classes.

It's the comraderie with group boxing, but also it's a lot of thinking.

There's agility involved and the best exercise approaches for a Parkinson's in general involves a combination of high intensity training, meaning intense for that individual.

So for some people that might be literally just doing some chair aerobic type thing with a therapist.

So that aerobic component where they get to where they're a little bit panty but they can still talk, that's a good litmus test for knowing that you're working intensely, combining that with strength training, agility, balance.

So if you think about it, a lot of these components are involved in boxing and it also adds a little bit more cognition to it.

Like they might add in drills where they might say to punch with the right, but they have to do the opposite of what the person says and so on.

So it's a lot of like thinking and dual tasking.

- You mentioned camaraderie and you have a support group there.

What goes on there?

I think that's really fascinating.

- Oh, it's so great.

So our facility, we got a grant through the Parkinson's Foundation and we were holding some Parkinson's specific fitness classes, but we also have a support group.

The support group is pretty strong.

We have a lot of engaged members.

Just this week we had 27 members attend our last meeting.

- Wow.

- So our meetings are at Allied Services Heinz Rehab, the third Tuesday of each month at 4:00 PM and we basically talk about whatever the members are looking for.

So this month they wanted to know about medical cannabis for Parkinson's.

In the past they've wanted about medications for motor or non-motor symptoms.

We do have a social worker coming to talk about some of the kind of challenges that Nicole deals with at her center with helping care partners find respite and things like that.

And to care for themselves.

(laughs) - Yeah.

- So we hope to have a lot of topics that the members are looking for in the future.

- What about medications?

We've talked a lot about physical therapy and exercise, which I get is great.

Is there anything new out there that people are trying or do you suggest other things to go along with physical therapy and exercise?

I mean maybe.

- There's nothing really new.

- Nothing new.

- I mean they're doing a lot of trials on different things like diabetes drugs for Parkinson's and things like that.

But essentially the same drug has been around since, I wanna say 1967.

Yeah, definitely in the 1960s.

- 1960S.

- Is when levodopa was first used for people with Parkinson's.

And it's actually still, most physicians believe.

the best medication out there for Parkinson's.

So usually it's one of the first line treatments that they use.

Occasionally they'll use other medicines called dopamine agonists as the first line treatment.

And people with few symptoms.

For the most part, they're using a combination of levodopa-carbidopa.

The carbidopa's added so that they don't get nausea when they take the levodopa 'cause levodopa can make you nauseous.

- And is that something they'll need to be on for the duration of the illness?

I mean, that's just, that's life now.

- Typically, yes.

It allows them to move the way that they need to move and it optimizes their ability to do the exercise that's needed and the movements needed for them to do their best.

- And it sounds like once they're doing the exercising, then that's maybe where you see some of the improvement.

So with our last two minutes here, I'm just curious, I know you wanted to talk about being seen right away.

First moment of diagnosis.

Why is that so important to you?

- People who are seen earlier do the best.

It's never too late.

So even when we see people later, even when they take up exercise later, it's not too late.

But the best results are seen early and continuous.

So it needs to be early and continuous.

And a therapist like myself, we will find the problem.

So we'll find a problem that you weren't aware you had.

And it's not to be discouraging, but it's to help you fix it now or get it better now.

Keep it from getting worse, you know, before it's a big problem.

- And I know you would love for the stigma to go away or why won't people just call if they need you?

You know?

- Absolutely call your doctor, be seen by the doctor so you can start physical therapy.

It's very important.

- Well, I'd love to bring you back maybe a year from now, two years from now and see if there is something else out there or something else that you're doing.

But I think you're both doing really great work to educate people about this disease and I appreciate you being here very much.

That's gonna do it for this episode of "Call the Doctor".

We are so glad you've joined us.

If by chance there's something you missed or you wanna listen to again, you will find the whole show at our website, wvia.org.

For all of us here at WVIA, we appreciate you watching.

Thanks and we'll see you next time.

(happy music)