(upbeat music plays) And welcome back to Family Health Matters, I'm Shelley Irwin.

With me today, those guests.

Pete Cudlipp, you are retired, but here to share your story, your journey with Parkinson's.

Tina Rubin, physical therapist with Mary Free Bed at Metro health.

Glad that you are here.

Kendra Shoemaker, executive director of SarahCare Adult Services.

And Dr. Danette Taylor, movement disorder specialist at Mercy Health Hauenstein neurosciences.

So big introduction to big people.

Let's begin with the basics.

Dr. Taylor, would you talk about how you are spending your days with Parkinson's disease as a clinician?

- Well, certainly.

And I see, the majority of patients that I see as a movement disorder specialist have Parkinson's disease.

And so I see people who are coming to me because they have some early symptoms.

Maybe they just have a little bit of a tremor of one hand.

Maybe they've noted that their walking is a little bit different as they're traveling down the sidewalk.

Maybe they haven't even noticed those things, but a spouse or another family member has called these things to their attention.

And they come in and they say, what is this?

What can I do about it?

Might this be Parkinson's disease?

And so we do spend a lot of time talking about what is Parkinson's disease?

Why do we get Parkinson's disease?

How can we control Parkinson's disease?

We have many different medications that we can use to, to control patients with and help their symptoms.

The frustrating part about Parkinson's disease is that we don't yet have a cure.

That doesn't mean that people can't have a terrific quality of life and can't have good symptom control for many, many years.

That is absolutely possible.

And there are new things coming down the pipe all the time regarding research.

And I'm happy to answer any questions you may have about those.

- Hmm.

Thank you for you.

And for the care that you give.

Kendra, talk about your, your work in this field.

- Hi, I am Kendra Schumaker with SarahCare Adult Based Centers and our work focuses on care during the day, home by dinner.

So generally when we are seeing the Parkinson's patient is when the illness becomes more advanced and a person with Parkinson's needs help with their daily living skills during the day.

Oftentimes they have a caregiver at home, who may need a little bit of assistance with managing those daily activities.

And that's where we can come in to assist.

SarahCare offers quality care during the day.

Activities that engage people and make the daytime care enjoyable.

And we can also assist with things like bathing and personal care, which is where the caregiving becomes more challenging.

So we really help extend the life of a person who needs extra care at home with their family.

- Thank you for that, Kendra.

Tina, would you take us into your world of physical therapy and Parkinson's.

- Sure.

So I'm a physical therapist with Mary Free Bed.

I work at Metro health hospital.

The patients that I see are outpatients primarily that are coming specifically for Parkinson's.

I am LSVT trained, otherwise commonly known as big and loud, and then power trained as well, to sort of research based therapies, specifically targeting Parkinson's.

And we work a lot on education of Parkinson's, what to look out for, things that you should be monitoring and then giving people exercises to work on.

And then very very, a ton of time spent on functional tasks, specific to that patient, whatever it might be, every patient is a little bit different.

But basically the exercise is medicine.

So the more, the better.

- Hmm.

Thank you for you.

Pete, when were you diagnosed with Parkinson's?

- With Parkinson's, probably early this year, maybe March or April.

But they diagnosed me with Parkinson-ism several years ago, perhaps four or five years ago.

And I think probably I could have been diagnosed earlier than that because I've had problems with tremors in my hands before, which seems to have preceded the actual diagnosis of Parkinson's.

But I had a fall in January 1st and it seems like that fall accelerated all the symptoms of Parkinson's.

- Hmm.

And was the tremor one of your first symptoms that you needed some, some care?

- Yeah, I think they have that in mind, but my walking is very difficult today.

My diet is good.

- Well your diet is good and hopefully there's exercise in your life.

We'll get back to your journey in just a second.

Let me throw it back to you, Dr. Taylor, when it comes to noticing first symptoms.

And if you could share a bit more on risk factors at this at this time.

- And we, we do know that the initial symptoms of anybody with Parkinson's disease might be a little bit different.

We focus on tremor as an initial symptom, but we have to keep in mind that perhaps only about two thirds of our patients with Parkinson's disease really have tremor.

So not having tremor might lead somebody into a different diagnostic pathway, and then it comes around and in fact, they do have a diagnosis of Parkinson's disease.

So that's always one thing that we want to keep in mind is that not everybody specifically has issues with tremor.

They might have just slowness, or rigidity, or difficulty getting dressed.

We often have referrals from people like Tina in physical therapy, because patients have been referred for things like shoulder pain or a frozen shoulder.

And the therapists are acute enough to say, wait, wait, wait, some of your symptoms look very much like Parkinson's disease.

Let's get you in to see a specialist and have this evaluated.

And it's very interesting how many patients do complain of issues with shoulder pain, and are just sent for evaluation only of that specific symptom.

So I had mentioned walking issues as well.

And that's one, another factor that sometimes patients, you know, miss a neurologist completely and are referred to a therapist and the therapist says, wait a minute, we see some symptoms that look a lot like Parkinson's disease.

Let's get you more fully evaluated.

So risk factors are actually kind of theoretical, where there are no specific risk factors for people with Parkinson's disease.

There are some familial components, meaning some genetic markers that have been identified, but to the best of our knowledge, even today in August of 2021, it's a very small percentage of patients that have that familial component.

The majority of people have what we call idiopathic, or we don't know why they develop issues with Parkinson's disease.

Some risk factors seem to be lack of physical activity as a very young person in their twenties or thirties or forties.

And that seems to be associated with the risks of developing Parkinson's disease.

But that certainly not everybody, we have patients that are marathon runners that are diagnosed with Parkinson's disease.

So that's not a sort of one size fits all as we begin to look at risk factors.

The best that we know regarding Parkinson's disease, it seems to be probably a combination of some as yet unidentified genetic components, as well as environmental factors that, that causes the syndrome or the disease that we call Parkinson's disease to become prevalent in somebody.

- Hmm.

I'm gonna jump down to you, Tina, what's involved in your evaluation as a physical therapist, and where often do you begin treatment?

- So our evaluations at Metro here, we see patients on the initial visit for about an hour and a half.

We go through everything right from the beginning.

When did you first start seeing some symptoms?

We talk about the non-motor signs of Parkinson's.

There's a lot of, you know, people think of Parkinson's as strictly a movement disorder, but there are a lot of other things.

There's sleep disorders, there's sensory disorders, loss of smell, color vision, cognitive changes, neuro-psych, urinary changes, just a lot of other symptoms.

So we go through some of those and then we do some real specific things, you know, muscle strength testing, and then watching them walk.

That's one of the biggest things that we do.

We use video taping.

So we take tape doing various functions, getting in and out of bed, getting in and out of a chair, walking down a hallway.

And it's quite amazing showing them back their videos, even on that very first day, a lot of patients are very unaware of exactly how they're presenting, because Parkinson's is such a slow onset for the most part.

You know, people don't realize that their arm doesn't swing anymore, that their leg stride length is different or something like that.

So that's, that's what we're targeting.

And then a ton of education, because people don't always want to come.

You know, they think, oh, I'll come one time.

They'll fix me and I'll be off.

And that's not how it works.

You know, exercise is a lifelong thing.

If you want to always tell people, you can stop exercising when you stop having Parkinson's, but how badly do you want it?

The more you do the better.

And there's many studies out there that show that the more vigorous the activity, the better the outcomes.

- Kendra back to you, how do you incorporate not necessarily treatment, but knowing that a client has Parkinson's, maybe in treatment again, how is that incorporated into your services?

- Well, with our services at SarahCare, we focus on care during the day home by dinner.

So during our daytime care, we focus on activities that involve stimulating the mind, the body with physical activity and socialization with other people.

We know that relationships remain important throughout our life.

And that is one of the best things that SarahCare can offer, is a place where people can go to get the care they need, but also to make sure that their socialization needs are met.

In addition to that, we have bathing and personal care that we do right here.

Care during the day home by dinner, again.

Especially if the caregiver at home has difficulty doing the bathing or maybe their home bathroom is not set to accommodate a handicap situation.

We can do the bathing and the personal care here.

We also work very, very closely with physical therapy, occupational therapy, and other rehab services.

And oftentimes those types of referrals come right into the center.

So people can either have those services done at home, or they can have them done while they're here at SarahCare.

We also try to have normalized activities such as a beautician that comes in.

Prior to COVID, we've had more activity groups coming in, which we're starting to get back a little bit, slowly but surely.

In terms of relationships, we really feel like intergenerational activities are so helpful to everybody, but particularly people who have Parkinson's and or other types of disorders, to help keep, help keep that sense of community strong and that sense of belonging strong.

So people can come to our center as much as five days a week or two days a week, whatever their preference is.

- Hmm.

Thank you for that.

All right, Pete, what has been your journey of treatment?

Are you in therapy now, as we speak?

- I was in therapy for having broken my hip, but along the way, the doctor had determined that I had Parkinson's disease and we abandoned the hip treatment, because it wasn't going very far and now we're getting therapy for Parkinson's disease.

I'm getting my therapy at Spectrum Health.

And so far it's been about a month, I think.

I seem to be improving.

They told me that my coordination and my, my stamina, et cetera, was improving over the, where I was at the beginning.

I've got a long ways to go and I'll never be there totally, I don't think.

I think the limitations of Parkinson's are kind of permanent, but you can build on that and get back.

so I could walk with a walker easily.

Right now it's difficult.

I'm lucky, I have a wife who is taking very good care of me.

So I, I eat good balanced meals, regular meals, and yeah, my speech is affected.

I don't speak as well or as loud as I used to speak without some effort.

- Well so far so good.

You're passing all the tests here.

So very nice.

Tina, what's your respond, yeah go ahead.

- The lady, the lady from Sarah's outlined the kind of treatment I'm getting at home pretty well.

I'm very fortunate.

- Yes.

Let me turn to you again, Tina, how important obviously is, is, is therapy in an outpatient clinic, but also a therapy at home so that the therapists, such as you, assesses his life, his necess, Pete's necessary function.

Talk about that.

- Right.

So there's various agencies that do provide in-home therapy.

Again, somebody with Parkinson's, I would strongly recommend getting a therapist that is either LSVT or PWR certified, because they are specific to Parkinson's.

So again, it's commonly called big and loud or power.

Super-helpful in-home.

For me, the patients that are coming to me are for the most part, pretty mobile.

We get some as young as in their forties and I've had some as old as in their nineties.

I've had people walk themselves up.

I've had people come in a wheelchair.

So it all depends on, on how much support and family involvement there is.

But we, we work on exercises and then we work again on function.

So every single patient is going to look a little bit different.

It depends on, you know, the most common thing I hear is I can't get out of my chair.

People struggle to get out of the chair.

So that's like the number one thing that we work on with patients, and then walking, people often experienced freezing of gait, instability, difficulties with turning, difficulties with going through doorways, the narrow spaces and they get stuck or their gait gets a little bit more difficult.

So again, not everybody experiences this.

what we have found for sure though, is the younger you are, and the more early that you are diagnosed, regardless of age, the slower in the, in the disease or the earlier in the disease, that you are, the more vigorous that you can exercise, the more change that you can make.

And that's been proven scientifically.

So again, the earlier that you start, the easier it is to maintain a threshold of exercise.

Exercise produces, you know, so many different changes in a person.

And the goal is to change the brain with exercise as well as to retrain function.

But if we can do aerobic strenuous activity, you can actually produce some brain change.

- Hmm.

Thank you for that.

Dr. Taylor, you mentioned earlier research.

This, at this point, no cure, more of a control.

Expand on, are scientists working on a cure as we speak?

- Well, it's, it's my belief, I think it's probably shared with some others, that it's going to be difficult to find a cure until figure out an underlying cause.

And that's still the black box.

We don't know why people get Parkinson's disease.

And so until we understand specifically what triggers the changes within our brain, it's going to be hard to come up with a specific cure for everybody.

So we're still, yeah, we're still looking specifically at those answers.

In the meantime, there are many, many good symptomatic treatments that we can offer patients that are coming along.

Some of which may provide some very, very long lasting treatment options.

Stem cell research is, is being started.

Again, we do know that we can turn on dopamine producing cells within the brain.

It's just a matter of finding the correct checks and balances for that type of exciting therapy.

And so that's being studied right now, and we hope that we'll be able to provide that type of treatment for our patients in the years ahead.

In the meantime, we have many good medications that can help control symptoms throughout the course of the day.

We have the physical therapy that we've recognized that can be very beneficial for patients with Parkinson's disease.

Various tools, whether those are special walkers or other types of devices that can help patients with Parkinson's disease remain mobile, remain independent, remain functional, are absolutely available for everybody on a regular basis.

- Hmm.

Thank you for that, Pete, back to you, do you have any advice for caregivers that may just beginning this program with their loved ones?

You self admitted that you have a very supportive wife, daughter, other family members.

How important is it that the caregiver cares for themselves?

- I, I think it's important.

How important I can't say.

That's, everything is relative, but yeah, my wife has been very supportive and I, she's also not young in today's terms, but because taking a walking or taking a bath requires physical effort, I have hired a caregiver to come in once a week, to give me a bath, which is very helpful and takes that pressure off my wife.

She still has the pressure of cooking three meals a day, which is a lot of work.

- Yes.

Are you advised to get a certain number of hours of sleep, Pete?

Is sleep important in your care?

- In my particular case, I found that I needed much more sleep than I used to need.

Often I'll sleep 10, 10 hours, 11 hours.

Whereas before I slept seven or eight hours, I was fine.

But I used to get up at six o'clock in the morning and now I'm often eight o'clock I'm getting up and still going to bed at 9 30, 10 o'clock at night.

But I think everybody's different on, on sleep.

I need a lot of sleep.

I seem to need a lot of sleep.

Other people seem to get along just fine with rather little sleep.

- Yes.

- I know one thing that's probably true of everyone with Parkinson's, is I get tired rather easily.

And I honestly don't know whether I'm really tired or just a symptom of being tired, but I do feel tired, and I kind of need a rest right after lunch.

So often I'll fall asleep for an hour.

- Well, let me turn to you, Dr. Taylor, would this be a side effect of, of the, the process?

Some fatigue that's abnormal?

- There are so many causes of fatigue, or sleepiness through the course of the day.

Boy, I'm not sure that you really want me to dive into all of them.

Many, many patients with Parkinson's disease do experience some underlying fatigue or sleepiness as the day progresses.

It's not necessarily just because of Parkinson's disease.

And if it is something that is impacting day-to-day function, we encourage patients to talk about that with their, either their primary care physician or with their neurologist.

Maybe it's going to be a simple matter of adjusting medications.

Maybe it's a matter of looking at blood pressure.

Maybe it's a matter of looking at some of the other medications you're on.

But, but don't just believe that, oh, I'm tired through the day, it's my Parkinson's disease, this is all I can do.

There, there are many different things that we can impact and, and make some changes to again, help people feel good and be highly functional through the course of the day.

- Thank you, Kendra?

Yes.

Yes.

Kendra more from your angle.

What are we missing?

Do you have support groups?

Do you have a thorough evaluation when you do accept a new a client that has Parkinson's?

- Yeah.

We do have support groups and we also have the ability to work with physician offices.

We, we have nurses on staff.

So if we have a patient who comes in, who has certain needs, say for example, Pete brought up getting fatigued after lunch.

We certainly want to take that into consideration while they're here, and provide them a place where they can rest for a while after lunch.

Although we're not, we're not a place for people to sleep.

We don't have beds here.

But we do want to help people just be engaged and, and enjoy their day.

Quality of life is very important at SarahCare, and for people who can come here and get the care during the day and go home by dinner, we really find that the routine of getting on a schedule again, is very people who do have limited needs so that they can have a predictable experience of getting their care needs met, but yet not being overwhelmed by being away from home too long.

- Hmm.

Yes.

Kendra, ow do we find out more about SarahCare?

- SarahCare has a intake and assessment line and that number is (616)528-4003.

We can help answer questions that a person might have and we offer a free trial day as well.

And that can be scheduled through that same number.

- Nice.

Tina Reuben, what do you leave us with when it comes to the good work of physical therapy and Parkinson's?

- Well, I just also want to give a shout out to the speech therapist that are involved with Parkinson's disease.

I feel like it's a really a huge collaboration at Metro, between speech and PT.

Equally important.

Like Pete had mentioned, people speaking a little bit softer, actually swallowing difficulties with, with Parkinson's disease is fairly common.

People feel like they can't be heard, so they don't want to go out, so depression, that kind of thing can help set in.

So it's not just big.

It's also loud.

And then there are also lots of resources out there that people, I don't know if people are even aware of how much we have in this community.

There are support groups, there are exercise groups, there are yoga classes, there's boxing for Parkinson's, there's all kinds, Tai Chi for Parkinson's, there's a ton of stuff.

But the, some really good websites to go to would be the Michael J.

Fox foundation, the Davis Phinney foundation, Parkinsonswoman.com.

And then LSVT global, Parkinson's wellness recovery, just a ton of resources that you can go into and, and, and get some information from.

- And how do we find out more about you?

- Metro health.

You would have to have a prescription from a physician and then it would go through the normal, regular referral process.

Your physician would have to write out a referral or call in a referral to Metro Health.

And if they specify, specify Parkinson's disease, it will come to one of three therapists here that specifically work with Parkinson's disease.

And then again, speech therapy as well.

We, we most often co-treat patients with Parkinson's.

Very few people don't need at least the speech evaluation and a swallow evaluation, at least to get a baseline, so that they know what they're looking for going forward.

Education again, huge part of this.

- Yes.

Dr. Taylor, I leave you with less than a minute, please.

- Okay.

Well, very good.

Well, thank you for being here.

Parkinson's disease is still under-recognized.

I think undertreated, we have many, many options that are available for patients ranging from medications.

We are doing clinical research here at Mercy Health.

We have surgical options that are available for the correct person.

We are available for assessments and, and I would encourage anybody that has any concerns to, to reach out.

And, you know, we are happy to work with you.

If you want a phone number it's (616) 685-5050.

If you want to learn more about us and our program, you can go to mercyhealth.com forward slash movement disorders.

- Nice.

Thank you all.

Pete, thank you for your sharing your story.

Good luck to you.

Hello to your family, and Godspeed, as they say.

Now, go exercise!

Thank you all.

Take care.

Yep.

Bye.

Thank you for watching.

Thank you for watching.

Take care.

Bye!

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