From Sky news.

This is connections.

I'm Evan Dawson.

Our connection this hour was made on February 24th, when the FDA approved a new treatment for people with Parkinson's disease.

The treatment involves what experts say could be groundbreaking new technology.

It's called adaptive deep brain stimulation.

According to the University of California, San Francisco, the technology uses an implanted device that continuously monitors the brain for signs of Parkinson's, and if it detects symptoms, it can deliver electric pulses to keep those symptoms in check.

The technology is one among several new advancements geared at helping patients in New York.

A new statewide patient registry supports research into finding a cure, as reported by the Michael J.

Fox Foundation.

A recent study suggests that the number of Parkinson's cases will grow by more than 25 million by 2050.

That's a 112% increase from 2021.

Chances are you or someone you know has been affected by this disease.

And this hour, we're going to talk about what I think is pretty remarkable technology.

But that is not the only story here.

There have been four new FDA approvals in just the last year to talk about, and we're going to talk about how guests are really kind of navigating that terrain to understand their disease, to work with it, what doctors are saying, and more.

Let me welcome our guests.

Doctor Ruth Schneider is associate professor in the Department of Neurology, movement disorders and the center for Health and Technology at the University of Rochester Medical Center.

Doctor, welcome.

Thank you for being here.

Thank you.

And next to Doctor Schneider is Amy Jones, who is a local resident living with Parkinson's and advocate for the New York State Parkinson's Disease Registry with Rochester women versus Parkinson's.

Welcome.

Thank you for being with us.

Thank you for having me.

And welcome back to the Hiltons.

Yvonne Hilton is co-founder and director of the Rochester Parkinson's network.

Parkinson's network.

First diagnosed when Yvonne.

2007.

Welcome back to the program.

Thank you.

And Kevin Hilton is here.

Care partner and husband to Yvonne and president and co-founder of the Rochester Parkinson's Network.

Welcome.

Thank you for being with us.

Thank you.

And so let me just start with Doctor Schneider, who is trying, I think, to.

She saw how excited I was about this technology.

And she just kind of wanted to not put a wet blanket on that, not by any means, but to be realistic about what we are seeing.

And this hour, we are going to talk about a lot of different approaches here.

What is new in this field, what patients are experiencing.

But when it comes to this treatment, I'm reading this as a layperson.

Doctor Schneider understand when the lay public gets our hands on this, we're dangerous because we think, well, this, this solves everything or this, and it's not necessarily something that solves everything.

but it feels very futuristic.

And I want you to take me through what we are seeing with that and who it might apply to first.

Yeah, absolutely.

So, what evidence referring to is the new adaptive deep brain stimulation technology that was just recently approved by the FDA.

one of four new approvals in the past year.

so deep brain stimulation or DBS, has been around for quite some time now.

but it's not something that's readily available to everybody with Parkinson's disease.

probably less than 5% of people with Parkinson's disease have DBS or deep brain stimulation therapy.

And what it helps with is to kind of evened out the ups and downs in your symptom management when you have Parkinson's disease, helps to manage tremor and it can help to improve quality of life.

So what's new and different about this approval is that this is adaptive.

So what that means is that instead instead of the physician setting the programing.

So selecting how the current is delivered and where, we set it.

But then the technology can adapt to brain signals so that it senses kind of in real time.

So that means that the individual can have more personalized, personalized treatment, and they can get the stimulation that they need when they need it based on their active activities.

I mean, it sounds so amazing to me.

Does this sound just run of the mill to you now in this field?

No, not at all.

A run of the mill.

And I didn't mean to be a wet blanket.

It's just level setting about the number of people who actually have access to this, to this therapy.

But it is phenomenal.

And I and I think it's the tip of the iceberg.

And there's more to come.

Okay.

So how do you know if you're the kind of person who's in this category, a patient who could benefit from this?

So right now there's, essentially three different indications for getting, DBS in Parkinson's disease.

so one of them is that you have a tremor or shaking that does not respond well enough to, medication management.

the other two indications are what we call motor complications.

So these are problems that arise, when you've been on treatment for your Parkinson's disease for a long time.

So we have many medications that help for Parkinson's disease, but unfortunately, they are often associated with motor complications, which are dyskinesia.

So these kind of extra wiggly movements, that can be really bothersome and uncomfortable for some.

And often so this is times when the medication just seems to stop working or it wears off and you don't have as good of a benefit.

So if you're having one of those types of complications, you might be a candidate for DBS.

All right.

That's a great start here.

And listeners if you've got questions comments I want to welcome them all throughout this hour.

You can call the program toll free 844295 talk.

It's (844) 295-8255.

It's 2636.

If you call from Rochester 2639994, you can email the program connections at cyborg if you are watching on our YouTube channel.

Hello there!

You can join the YouTube chat and we'll work in some of your questions comments as we go here.

before we kind of get into how everyone is doing here, I always want to know how van's doing.

We'll talk to Amy about her story, but I mentioned the Rochester Parkinson's Network, and I think it's valuable to mention there's an expo coming up and people who are not familiar.

Yvonne and Kevin, you want to tell us a little bit about what the Rochester Parkinson Network is?

Sure.

Rochester Parkinson Network is, is dedicated to making sure that every person that's affected by Parkinson's disease is connected to the information, resources and allies they need to thrive.

So we focus on education events.

providing information through, a fantastic website.

and, this expo that you just mentioned that's coming up April 26th at the JCC in Rochester will have almost 40 exhibitors, with, with, information about living transitions, for example, food options to simplify cooking chores, pharmaceutical companies, assistive device companies.

Yes.

boxing exercise, ping pong, pt ot so all sorts of, services like that and organizations like that that are beneficial for folks with Parkinson's disease.

It's open to everyone and it's free again.

April 26th from 10 a.m. to 4 p.m. at the JCC.

when you hold events like this, I'm sure there's people probably learning for the first time about, all kinds of things related to Parkinson's.

What kind of community has developed out of this network?

Well, we've existed now, only for three years.

in mid April will be our three year anniversary.

And in that period of time, we've come a very long way.

We are serving roughly about a thousand people in the greater Rochester area right now, plus a number of people, of course, electronically through our website and whatnot.

But if you consider the fact that there are somewhere between 4 and 5000 people in Rochester that have already been diagnosed with Parkinson's disease, and another four for each one of those people that is directly affected.

You're talking about 20,000 to 25,000 people in Rochester that are affected by Parkinson's disease.

So we're just just beginning to hit the tip of the iceberg.

How are you doing, Yvonne?

I'm doing great.

Thanks for asking.

Yeah.

what's the latest in your life?

just trying to manage my fall frequency.

but that's, I'm hoping that's the result of, my my DBS batteries is starting to lose its lose its charge, I guess.

And it is.

They're typically last for 3 to 3 to 3 to 5 years, because my settings are a little bit higher than normal than the average person with DBS.

my, my, as it might have, my batteries have not lasted quite as long.

So so I'm coming up on a battery change the whole I'm hoping that's what's caused this.

The falls.

But other than that I'm doing I think I'm doing great.

Now, when you talk about DBS again, the danger of a layperson hearing these terms and trying to make sure I understand when we talk about this new technology versus what you've been using for a while, not exactly the same thing.

And I don't know.

Objection either.

Wants to weigh in there too.

so, DBS has been around for several years.

The difference is that Yvonne's DBS just get set.

So there's a setting she has a little bit of ability, I'm assuming, to adjust it if she needs to.

but it is not adapting in real time to brain signals.

That's what's cool about the new technology, is that we don't have to play this guessing game of, you know, when do we need to make adjustments?

Exactly how do we adjust it?

The adaptive technology senses brain signals and automatically adjusts the settings in real time.

And the the the adjustment takes place in the battery portion.

So my electrodes would be compatible with with the with the with this new technology.

That that's a great question Yvonne.

So we are just starting the training at U of R this week.

Everybody is super excited about the technology.

So more to come.

But like I said I would reach out.

Yeah we'll do and.

So but but you've got it coming up here.

Your renewal of the battery.

Are you going to miss a deadline here.

How is this going to work out for you?

well, what will happen is I'll go in for it's an outpatient surgery, and my battery will be replaced with a.

But this time I'll get a rechargeable battery.

So this one should last for 10 to 15 years.

and depending upon whether this this technology is compatible with the electrodes that are implanted in my brain, then I will be able to make, you know, take advantage of the adaptive, quality of it.

It's an outpatient procedure.

Is that what I heard?

Is that right?

Oh, the battery replacement.

The battery replacement.

Is is not.

I would not think so.

We're talking about the brain.

Yeah.

Okay.

Yeah, that was cool.

That was really cool.

That was cool.

Yeah.

It was the brain surgery.

Yeah, it was.

It was very cool.

explain, explain.

well, you know, when I did this, it's been so much fun when I had it in 2013.

And at that time, they did they did each side separately.

So it was two different surgeries and and you're you're awake for it.

And the fact that you can hear the drill going through your skull is pretty amazing.

You have to you.

You think that's cool?

Yeah, it's very cool.

It's very cool.

And, they just all the all the the all that, you're awake for another, you're able to experience and see what's going on.

It's just incredible.

It's it's really amazing.

So.

So, when the drill automatically stops it so it doesn't do any damage, and, the electrodes are placed, they do.

They place both electrodes into one surgery now.

So that's cut down drastically.

And the amount of time that people spend to have the hospital, but they keep you have to be awake so that they can ensure that the electrodes in the right spot part of the brain, and they do that by and not exactly sure, but with Ruth, maybe you can help me here.

Yeah, absolutely.

so the placement of the leads is very important.

Right.

And so our team at the University of Rochester, which is run by, Doctor Andy Wenzel, our neurosurgeon, and doctor Carla Lizarraga, our, neuromodulation expert.

they work very hard in the operating room to make sure that these leads get exactly in the location where they need to be.

And they do that partially through taking some images in advance to help them plan.

But then also they take some recordings during the surgery, and they will have the individual do some different things while they're in there.

And that way they can sense some of the brain signals and tell if they're in the right spot or not.

Remarkable.

Yeah, it's really cool.

You are amazing.

Watching your husband react to that story was was something about when I was maybe 18 years old, I had a seven minute surgery to take a little cyst out of right between my eyes.

I was born with it.

I thought everybody had it.

It felt like a third eyeball in there.

I could move it around.

And when I realized other people didn't have it, I inquired about it and then found out we should probably take this out.

The 18 year old me was terrified.

I begged to be sedated for a seven minute procedure, and they said, we can't sedate you for this.

We cannot.

They were not drilling through my skull.

You're an amazing person.

You're.

And I do hope, though, that over time that is provided the quality of life, at least maintaining quality of life.

How much difference do you think it has made?

I think it's made a huge amount of difference.

I, I attribute it in large part to the reason I'm doing as well as I'm doing.

I'm, 2007 is I, I think that's I think I've had Parkinson's a fairly long time, and I think I'm doing really well, you know, relative to what you expect one might expect from Parkinson's.

I was diagnosed younger, but, I think all in all, I'm, I'm doing well, my, I the day qualified for DBS because I had a lot of dyskinesia and I was taking a lot of medication and, and since, since the DBS I am, I sleep better.

my medication is is leveled off.

I, I don't take as much as I was taking it at the time of the surgery.

and, my, my progression is this has been very, very slow.

So, so it's really afforded me an opportunity to live a great life.

Kevin, can you weigh in on that tumor?

Whenever you get a you get a diagnosis, you probably spend a lot of time doing quick research and trying to figure out what that means.

And part of what Yvonne is saying there is, if you would have asked her in 2007, 2008, 2009, what do you expect your life to look like in 2025?

It might not have been as optimistic a picture is.

The reality is, and that that is a good thing.

Did you experience the same thing where you're looking ahead, saying, this is probably one of the things will change, and has it been a better curve than you expected?

A much better curve than I expected.

I was I was very worried about what was going to happen to her and as a result, to our lives together.

Sure.

And, and certainly early on, there wasn't an awful lot, certainly not as much as was known then as there is now about Parkinson disease, about the causes, about the trajectory of the disease for a lot of people, younger people, as Yvonne was diagnosed when she was 44, younger people do generally tend to progress more slowly.

I certainly didn't know that at the time, nor did she.

And, like most people, even still today, people who get a diagnosis of Parkinson's disease are told, I'm sorry to tell you this.

You have Parkinson's disease.

Come back in six months, and many times they walk out of the doctor's office not having a clue about what to do, where to go, where to get information.

That's another place where Rochester Parkinson Network is helping people.

We've developed a package that we've managed to get to the University of Rochester and to Rochester Regional Health and to Rochester Neurology Associates.

So far, we hope to deliver it much further, throughout the the neurology network in the greater Rochester area.

And this package gives people something they can walk away with and a place to start to find the milestones on their path, to help them live the best life they can.

Well, let me ask Doctor Snyder about that, doctor Ruth Schneider, when it comes to how the medical system is interacting with patients, is it improving from what Kevin has talked about, some of that.

We'll see you in six months.

Uncertainty.

Is it better communication that you are seeing now?

I think in some ways it has improved.

thanks in no small part to the advocacy efforts of, the Hiltons and the Rochester Parkinson's network.

in some ways, there are just system issues.

Right.

So you opened the show by talking about how the prevalence of Parkinson's disease is growing.

And, you know, there are probably 4000 people in Monroe County alone who have the disease.

and so there are bandwidth issues.

We have to make sure that we have neurology is here to take care of folks with Parkinson's disease, and that they can get into clinics and get in when they need to be seen.

well, let me turn to Amy Jones for, for your story, Amy.

And I want to give you some space to tell us a little bit about your own diagnosis and what life has been like for you.

Okay.

Yes.

There's two there are two lives you have when you're a Parkinson's patient, you have life before Parkinson's, before diagnosis, and then you have your life after because it is definitely a shock to the system.

for myself, I found out for about five and a half years ago that I had it, so I was just 62, you know, looking to retire.

Planning on that?

I was a librarian at one of the correctional facilities and ran the inmate library, and I've been doing that for 16 years down at Livingston.

And, then along came this diagnosis, which I found out by.

I found out about it because I was having trouble with my shoulder.

I had had surgery on it.

I, tore worn rotator cuff and long, long terms.

But anyway, I had that surgery done.

It been a year, but it wasn't healing right.

I still had pain, and I just.

I shouldn't have gone.

According to the literature.

And according to the surgeon.

So he not knowing what else to do just for something to placate me, I think sent me to, for a nerve conduction study, nerve conductance conduction study.

And that was at the U of Rochester.

and I went in and had that done and he just almost immediately before you even started, he said, this is not the right test for you.

But he goes, we'll do it anyway just to satisfy them.

So he did.

And then when he was done, he goes, well, I'm going to go write, make some notes, write some things up, and I'll be back in to talk to you.

And my husband was with me.

And as he closed the door, it just came over me that my life was about to change.

He hadn't said Parkinson's yet.

No, he hadn't said the word.

was that on your mind?

Not until then.

Okay, but then what it did was it triggered a memory of having my father at the doctor.

Oh, boy.

And finding out that he had Parkinson's and.

Yeah.

Yeah.

in fact, that was the same place.

Even though my parents didn't live in Rochester, they were over in Rome, New York.

the neurologist there had recommended a second opinion when he had diagnosed dad.

So he sent us out here, to the Rochester U of R, and, they left out a thorough assessment, and that's where he got his diagnosis.

So that goes through your mind.

And then does the doctor come back in the door and essentially say exactly what you were thinking?

somewhat.

Yeah, somewhat.

and he was nice enough, but all of he was able to do for me was he goes, I'm going to refer you to a colleague.

You'll probably take a month.

He thought it'd take a couple of months to get in.

It took me just a month.

I found out I was very lucky there.

but that was it.

That was it.

That was all I walked out the door with, and George and I were just stunned.

I mean, more than stunned.

And what do you turn to?

You know, so we turned to each other and, I had gone through over a ten year period of progressively long distance care for my parents, and my father, he was 87 when he died, and he had struggled for about ten years with the Parkinson's, spent the last two years of his life in a nursing home and, the last two months in a wheelchair in the nursing home.

I guess he fell and he broke his hip and I think when the end finally came, it was a blessing for him.

So, yeah, I had all that under my belt, which had just ended maybe five years prior or so to that.

So this is going to be a retirement.

And this was not the retirement package I had picked out, and I couldn't find the department to go to to send it back.

So I, you play the card you're dealt and, I was fortunate when I did my undergraduate work, I was at Suny Institute of Technology over Utica, Rome, and I had a wonderful professor named Doctor Joanne Joseph, and she taught a health psychology class, and she focused on teaching people the value of resiliency and how you can for not only yourself, but for your children and anybody else as well, learn how to develop hardiness within yourself to deal with life.

101 and it became I had used it throughout my life, but it became really a game changer for me because now I held onto it for dear life.

This was going to be hard.

This was going to be very hard.

And you have to learn you are the locus of control.

You can't control necessarily what happens to you, but you can control how you respond to it.

And that's where the value is.

So I determined to do just that.

So I dived in.

Fortunately, having a background in library science, I love literature and I love looking stuff up, so that was good right up my alley.

I researched and that's how I came up with the name of the support group.

And that's how I met these two wonderful people, Yvonne and Kelvin, as well as some other wonderful, people in the support rooms I ended up I settled into going to be the one in, Rochester, the central one, because it was just easier, and it was at a convenient time.

That's a women's only group.

but they're they're great there.

So I'd found that.

I found other things.

I found a good the turned out that the doctor, doctor student that after the doctor Stan had referred me to was just excellent.

So I had no problem staying with him.

doctor Peter and and, I've had good luck there.

I started off on low doses of medication.

The carriage of beloved dope, the usual standard.

And my progression was slow.

And I guess it still is slow, but it's interfering more with my life.

How so?

Well.

Let's travel.

You know, I have up times and down times.

Pills don't last as long.

I take sick pill.

I take pills six times a day, and every one of those six times includes the carb, a dope, beloved dope, a medication, as well as other things.

Something for sleep, gabapentin for nerve pain.

some other extenders to help.

Parkinson's medication, the carpet, upper level work, and, and then there's all the good stuff, you know, the Coley's stool softener, all, all the unmentionables.

But it affects all your systems, all your systems.

So, yeah.

Yeah, there might be a day just devoted to.

Okay, folks, it's time to get stuff moving along here.

And it's a day for the gut and for taking care of it.

And, Yeah.

But you said it's a slow progression.

Relatively.

Yes.

Okay.

Yes.

I mean, I've heard of people going from 0 to 60 and gone into it two years or whatever, but it depends on how well you take care of yourself.

I am not the poster child for physical education or.

Activity, and they probably tell you that that will help it.

Well.

Oh yes, oh yes it is and it does, but I need to hear it.

So I keep trying.

I've taken I've been lucky to be able to take several classes over the JCC and other places.

dabbled in the Tai Chi and, yoga and some other classes.

But one of the most recent, side effects or things that reared its ugly head was leg cramps.

Foot cramps.

Oh, excruciating.

They just came out of nowhere, out of the blue.

And yes.

Oh, just toes curl everything.

And now I've gotten good enough that I can actually walk on them because I'm getting my coffee and I'm not waiting until you're ready to get out of bed.

Conversation with toes.

So there they are, curled underneath me, and I'm hobbling up to the kitchen.

But I make it and I get my coffee.

I sit down and they finally put themselves to bed and let me go on with my day.

Amy, can I also just ask you a little bit about, some of what I read about your story, what it's like being one of three people who grew up in a rural dirt road with Parkinson's disease.

Yes, yes.

it was a bit of a shocker.

myself, my father and a neighbor, just a stone's throw from my parents house.

I mean, I could literally hit there.

In my good days.

I could hit their kitchen window.

And you put your inspector's hat on and start asking, you know, what's the connection here?

If I lived in Rome.

Still, you better believe I would have done that in a heartbeat.

Yes.

Dirt roads.

Not quarter of a mile.

Maybe it's not a long one.

And 15 houses may be on it.

But you don't have something in your mind that that explains that if there is a.

Connection.

Well, my hypothesis would be.

And what I would determine is, test the soil in the water because the area in front of my parents house was all farmland before people bought up this land from the and the local man.

It was in his family, in his farm, so he divided it into lots.

My parents bought one way back and everything in front didn't get sold.

He saves it and and local farmer farms it.

But on the other side of the road.

Yes.

123456.

Six houses I think.

Yes.

So yeah.

Not not even about 12 houses and most of my brothers no less.

So I would want to know what the soil and water sample show because everybody was on well water or that there was no city water.

So I'd want the water and the soil tested, because there is a lot of literature out there that connects pesticides, paraquat, other other pesticides and farm materials, that they use for crops, crop protection, etc.

there are a lot of them connected, showing a connection between their use and Parkinson's.

And I mean that in no way to blame the farmers.

Sure.

I came from farm stock myself.

we were talking about farming out in the hall there and I have cousins, I've relatives up in Watertown, that area.

I was doing genealogy on the barns Corners, area up in New York State.

And yet they were all farmers.

So, yeah, I have nothing.

Nothing but respect for farmers.

I'm I'm always very sensitive to making sure we're talking about the best information we can.

Maybe I'm especially sensitive because last night I watched the Jubilee.

Media has a, a system in which they put one person surrounded by 16 to 20 people who might disagree with them or challenge their ideas.

And last night it was doctor Mike talking about vaccines with vaccines, skeptics and some of the things that the people were saying to the doctor, I'm going, oh my goodness.

Like where, where are we getting information from?

And it's a lot to fact check.

And so I just want to, ask Doctor Schneider, you know, you hear Amy story and there's a lot of people who very justifiably want some answers on where things have come from and how good is the data that you've seen now.

But understanding some of these know environmental causes, chemical causes, etc.. Yeah, I think I think the data is very strong.

So generally speaking there are a, you know, small proportion of cases of Parkinson's disease that are caused purely by environmental exposures like toxins.

There are maybe 10% to 15% of people who have genetic forms of Parkinson's disease.

And then everything else falls somewhere in the middle.

And it reflects an interplay between your genetics, right, what your genetic makeup is and your environmental exposures.

And that includes things like, well, water includes pesticides.

That includes occupational solvents like trichloroethylene or TCE.

so, you know, I think the evidence is great.

I mean, the EPA just banned TCE last year.

That.

Right, Kevin?

And hopefully it gets enacted, this year.

Fingers crossed.

Yeah, I'm a little worried about that.

Okay.

well, listen, we are late for our only break of the hour, and what we're going to do when we come back from this break is I want to ask Doctor Schneider about what else the FDA has, approved in the last year.

We've talked about some of that.

But, the state of the landscape of treatment and approach to Parkinson's disease.

You just heard Amy Jones's story.

Yvonne.

Kevin Hilton are here from the Rochester Parkinson's network.

And, a lot more to discuss.

We'll get some of your questions as well.

On the other side of this, our only break of the hour.

I'm Evan Dawson, host of connections.

We bring you in-depth conversations with newsmakers, with people from all backgrounds and points of view in our community.

And it's a chance for you in the audience to join the conversation in various ways.

Two hours every weekday.

We're proud to bring you these conversations, and we look forward to joining you next time.

I'm connections.

Support for your public radio station comes from our members and from Mary Kerry.

Yola center providing education and life skills solutions designed to empower individuals and the families of those with complex disabilities.

Mary Kerry, Yola Center Transforming Lives of people with disabilities More at Mary Kerry ola.org.

This is connections.

I'm Evan Dawson.

Don't miss anything you want to add there Amy.

I know in our conversation you had mentioned a lot about Parkinson's.

Anything that you want to make sure people hear, you've got some documents there?

Oh, I've just got a couple headlines I'll read to you.

Sure.

this was papers that I printed out a few years.

This is to 2017.

And the headline headline in this paper is Trump Administration Delays Bands of Toxic Solvents, regulation of high risk uses of track or less or a or roll.

Ethylene methylene chloride and on hold.

So yes.

as Kevin said, we're.

Kind of worried in the activist corners that anything is going to happen now that this administration is back in place.

Okay, Kevin, anything you want to add to that?

Well, the Biden administration did ban, trichloroethylene, and methylene chloride and, few other industry or solvents, except for certain, limited uses.

However, that ban was not enacted and it appears as though it's entirely possible that the new administration may overturn that ban.

Okay.

so that's something for us to follow there.

and I guess Doctor Schneider, you, you know, I guess administration, administration, you just kind of got to react to what the policies are.

Anything to add on what you're seeing from the federal level on that?

well, I think, you know, Kevin highlighted one aspect that's worrisome.

I mean, I think has also been much in the news.

Are the devastating cuts to NIH, CDC, FDA, all these other organizations.

And that does play a role in the development of new treatments.

So the gold standard treatment for Parkinson's disease is is leave it open.

It has been for decades that foundational research was, in part conducted at the National Institutes of Health.

The NIH and the NIH is just so critical to developing new treatments for Parkinson's disease and other diseases, and also training the next generation of scientists.

So I think there's a lot happening right now.

that potentially changes the, the playing field for Parkinson's disease.

But there's also good things happening.

Right?

So, we mentioned the for FDA approval.

So in the last year, there's been three others that we haven't talked about.

So one is a new form of leave a dopa.

That's a combination of immediate and long acting.

one is a subcutaneous form of leave a dopa.

So it's just like a pump version.

If you think about, a pump that somebody with diabetes might wear.

and then there's another pump version that delivers a different drug called apomorphine.

and so it's very exciting to have some new tools, some new medications that we can use to help treat Parkinson's disease.

and, you know, I think we're all still learning how to best use these and how to put them into practice.

but I think it is slowly changing the landscape of what's available for Parkinson's.

What is missing from the toolkit most that you want to see come along?

what is most missing is a drug that slows the progression of Parkinson's disease.

so that is really what the research field is, trying to achieve and has been for many years.

There's many different, exciting avenues of research.

some are focused on, you know, addressing some of these problems that arise from genetic variants.

Some are focused on targeting the, abnormal protein that gets phosphorylated and clumps in Parkinson's disease.

Others are thinking about repurposing drugs like diabetes drugs, and all trying to come up with ways to slow the progression of the disease.

And hopefully one day even prevent it.

so that's that's kind of what is most needed in the field of Parkinson's disease.

And, you know, I think it's exciting to see the field, moving towards more actively moving towards prevention trials.

Right.

So thinking about how do we intervene much, much, much earlier in the disease course.

to potentially prevent the onset of symptoms at any point.

When you mentioned NIH, for listeners who've been trying to follow along with what cuts may be coming from the federal government, I think there's been a lot of speculation about possible research cuts.

you know, you hear all kinds of talk about cancer research, you know, going to be dramatically scaled back.

so Parkinson's, you talk about it, but how inevitable is I mean, what what do we know is happening?

Or I mean, is some of it just kind of speculation at this point?

I haven't gotten any indication that Parkinson's disease research is particularly being, threatened or is at risk.

But I think there's a tremendous amount of uncertainty right now from, and certainly evidence that, grants that are focused on die efforts are being targeted and have been cut.

study sections have been delayed.

So the, the mechanisms, the processes by which the NIH, reviews grants and decides what to fund that, that whole machinery, has been drastically slowed down.

But what what do I have to do with it.

With with Parkinson's or with.

Well, you you mentioned that it's being reviewed.

How is that possibly related to, you know, what's getting cut or how this is unfolding?

well, so the two main issues are there is a season communications at the NIH.

And so this delayed this process of reviewing grants and sending out funding notices to research teams.

there's also been some grants that have have their funding has been revoked and these grants have been on the largely on the topic of Dei.

Right.

So understanding, for example, for example, LGBTQ health topics like that.

Okay.

So, you know, when you look at what's going on with some of that, are you worried that what's happening to your.

I'm very I didn't even finish the question.

Yeah, I was jumping right in.

Pick me, pick me.

So.

Well, tell me what you're concerned about.

I'm concerned the that the universities are the the research funding is being is being cut.

I'm I'm concerned that NIH is being defunded.

the Parkinson's one more thing I'm worried about is EPA laws being rolled back.

Parkinson's.

Parkinson's is is it's proven that there are chemicals that trigger it, and we this country is allowing those those chemicals to exist in our environment to to continue use of some of them.

And, and our food, our food system is certainly no poster child for, for healthy, clean food.

we, we're, we're essentially a this is a bit of an overstatement, but we're essentially poisoning our kids by letting these things stay in the environment and in our food system.

Parkinson's takes years to develop, and I did, I did, I in a person.

So, you know, until, until these, these environmental issues are, are addressed.

we're going to continue seeing Parkinson's cases and they're already increasing, as you mentioned at the beginning of the show, you know, astronomically and it's this is this it seems like we're moving in the wrong direction from a policy standpoint to, to control it.

If I can weigh in a bit on that as well.

you heard, Ruth say earlier that paraquat, for example, is connected with Parkinson's disease, and that's been proven.

Paraquat is manufactured in Great Britain and in China, and it's banned in both of those countries for use.

They export it just fine to the United States, and we use it.

And it's on almost every corn and soybean crop in the United States.

except for organics, and, the industrial solvents that Ruth mentioned, trichloroethylene, perchlorate, ethylene, those have also been shown to be connected with disease, cancers, Parkinson's disease, other neurological conditions.

But we still are allowing their use and, their, their someone has to take action, and it has to be the people that are going to take action to, to change to change the landscape in our favor.

China banned paraquat in 2017, citing its high toxicity and the potential for pesticide poisoning.

so just a little fact check there.

Kevin's on the money.

No, no surprise, but, can I ask Doctor Schneider?

You know, some of what Ivana's concerned about, some of her fears that she relayed.

What would you say about those concerns that she has about.

I would say they are, well founded.

I mean, I share Yvonne's concerns about research.

again, you know, the NIH, the role of the NIH in advancing new treatments and developing new treatments and helping to build the the researchers of tomorrow, is just so pivotal.

Pivotal.

It's so incredibly important.

and so I definitely share her concern and her frustration.

And, and I would say that we should all be out there advocating, to maintain robust levels of NIH funding.

just as what, as one example.

Well, let me read a little bit from March 12th here, Associated Press headline on what the EPA is doing.

But before I read this, I mean, I don't want to, paint the picture that any, deregulation, any single deregulatory action is going to lead to disease or inevitable disaster.

there's a new book by Ezra Klein and Derek Thompson called abundance that is pretty critical of a regulatory regime that makes it very hard to build and build environmentally friendly projects and low income housing and things like that.

So there's a certainly debate about what regulation is necessary.

and yet I mentioned on this program recently that I showed my son recently a picture of I grew up in Cleveland of the river in 1979, the year I was born.

And he said, where's the water?

It's an aerial picture of the Cuyahoga River.

And I said, you're looking at it.

He said, well, it's orange.

And he said, how is anything alive in that water?

And I said, it probably wasn't the river caught on fire in the 60s or 70s.

So I don't know if times.

Okay.

So again, Kevin, even more than I am.

So it's easy to find.

You should Google that picture.

Listeners of the Cuyahoga River.

I'm not saying what I'm about to read means we're going right back there, but I think I think it's worth asking, what are we doing and why?

So here's the Associated Press, in what he called the most consequential day of deregulation in American history, the new head of the Environmental Protection Agency announced a series of actions to roll back landmark environmental regulations, including rules on pollution from coal fired power plants and electric vehicles.

you know, regarding climate change and electric vehicles, he says, we're not going to focus on that.

We are just driving a dagger through the heart of climate change, religion and ushering in America's golden age, new EPA administrator Lee Zeldin said in The Wall Street Journal.

In all, he said, he's rolling back 31 environmental rules, including a scientific finding that has long been the central basis for U.S action against climate change.

That's Lee Zeldin, obviously.

He's from New York state.

He ran for governor here, and he says his main goal with the EPA is to cut regulation.

That's his main goal.

So I'm not trying to paint like a dark picture.

I'm just saying that we're in a bit of a different set of emphasis, and we should be asking what each one of those 31 or whatever the number is, what they're doing and why.

Look up 2000, the, Martin County, Kentucky, coal slurry impoundment spill, 200 miles of waterways, everything dead in the water.

So these are the kind of the regulations that are being targeted here.

So we'll see.

let me get a just a little bit of your feedback here.

And there's a question that I think is really important comes from a listener who says, I have a dear friend with Parkinson's.

He's open about it.

But there are general limits.

Are there general limits on how proper or comfortable one can be in discussing the disease with people who have Parkinson's?

Please don't use my name, he says.

You know, he didn't want to tip off this friend, but he just wants to know, there are certain things that, you know, you find that you don't want people to ask about or talk about.

I mean, he's trying to be a sensitive friend here.

I, I try to on the side of giving TMI.

I, I, I've learned so much about this disease, and I, I, I want to share what I've learned, and and, they're not all.

It's not all the know.

Dinner conversation, talk.

You know, we talk about stool softeners and, movements and inconstancy and, you know, vision changes and mood changes, apathy.

but if we don't talk about them, we don't really we don't we don't share our experiences.

We don't learn.

We don't we don't we don't kind of embrace, embrace the the new now the new me.

and what when you walk with Parkinson's, you shouldn't walk alone.

hearing that other people are sharing those experiences is is, is comforting and and, Amy, I appreciate your.

Yeah.

What do you think, Amy?

yeah.

That's fine.

I just want to jump in and say that when Kevin does a closing or even an opening for one of the networks, trainings, etc., he always focuses on describing and reminding the participants that you are the network.

You will say, and spread his arms wide over the whole audience, conveying that we are what really make it spark.

Because with Parkinson's, everybody has it different.

like a snowflake disease.

you never know what you're suffering with.

So sometimes your best place for help is to talk to others or on the chat lines or the forums, whatever.

the various Parkinson's not for profit organizations, and they'll have suggestions posted.

And a lot of times you'll find something that might work.

Their sleep problem.

again, regulatory, sleep apnea, you never know.

Dystonia, which is what the formal word for the leg and feet cramps.

It's.

Yeah.

You never know who you get to come across that'll have a solution or a thing to try.

To talk about it.

So yes.

So talk about that.

You can't people that have had it, we've heard it, you know, heard it all or no.

It's like working in the matter.

You're like.

Oh, you know a professional in the medical field.

Yeah.

You can't embarrass those nurses.

They've seen everything.

Well, Amy mentioned Kevin and the Rochester Parkinson Network once again as we get ready to close here.

Parkinson's disease expos coming up on April 26th.

Kevin, what do you want people to know?

That is correct.

April 26th.

That the JCC from 10 a.m. until 4 p.m.. but there is one other thing I would like to say.

And this is a scoop right here on Sky and are your radio today.

This morning at 9 a.m., Rochester Parkinson Network announced that, there is a respite care grant program, which is now available through Rochester Parkinson Network.

It will allow up to 12 hours of respite care for anyone who applies for and is, made a recipient of that grant.

We're doing one per month, for this year.

Once we get all the bugs out of that program, we hope to do more.

But that is available as of today.

You can go to our website, Rock Park Net, that is our Oak Park net.

Dawg.

Dot org.

And get more information.

We'll put a link in our show notes to the Rochester Parkinson Network if you want to learn more.

To get in touch.

as Amy did.

And it certainly changed Amy's life.

Oh, absolutely.

You know her?

Fantastic.

We we tend to think so.

We love having Hiltons back here.

Kevin and Yvonne, thank you for sharing your story and doing the work.

We appreciate having you back on the program.

Thanks for having us.

Amy Jones, great to meet you.

Thank you for telling your story.

Good luck to you.

Thank you and for all the expertise.

Thank you, Doctor Schneider, thanks for sharing with us today.

Thank you from all of us at Connections.

Thank you for listening.

Thank you for watching on the YouTube channel wherever you are accessing us.

We will be back with you tomorrow on member supported public media.

This program is a production of WXXI Public Radio.

The views.

Expressed do not necessarily represent those.

Of this station, its staff management, or underwriters.

The broadcast is meant for the private use of our audience.

Any rebroadcast or use in another.

Medium without express written consent of WXXI.

Is strictly prohibited.

Connections with Evan Dawson is available as a podcast.

Just click on the connections link.

At WXXI news.org.