The Paid Leave Podcast

A Courageous Story About Parkinson's Disease, and the Resources That Offer Support.

• The Connecticut Paid Leave Authority • Season 3 • Episode 36

Share episode

In this episode of The Paid Leave Podcast we discuss Parkinson's disease, what it is, what it does, and how to treat it. Parkinson's Awareness Month is observed in April, and is an opportunity to increase awareness about the ailment and its symptoms, as well as to support victims. National Parkinson's day is observed on April 11 every year to raise awareness about this medical condition and its severity. Muhammad Ali and Michael J Fox are the most well-known people to suffer from Parkinson's disease. Joining in on this conversation is Holly Seymour, the Program Director for the Connecticut Chapter of the American Parkinson's Disease Association, also known as APDA. Heather Pierce joins us as a caregiver. She supported her dad after his diagnosis of Parkinson's in 2019 and was his caregiver and advocate before he passed in 2021. She's now a board member for APDA and leads a support group where she helps those with PD and their care partners navigate the changes of life with PD. She also owns a company called ClearView Senior Living Advisors, where she helps families connect to resources. She's starting school in Vermont to be an end-of-life doula to further the support she can offer families. She's also a community educator for the Alzheimer's Association.

Holly explains Parkinson's symptoms, treatments, and the importance of support groups. Heather recounts her father's personal journey with Parkinson's, highlighting the challenges of caregiving. They emphasize the significance of mental health support and the benefits of Connecticut's Paid Leave program for those diagnosed who are still working, and to their caregivers. The podcast aims to raise awareness and provide resources for those affected by Parkinson's.

To get in touch with or to join a support group with the APDA please go to: apdaparkinson.org/CT or call 860-996-4276.

To get in touch with Heather Pierce go to her website at: Clearviewseniorlivingadvisor.com or call or call 860-733-9506.

For information or to apply for benefits please go to: ctpaidleave.org

https://ctpaidleave.org/s/?language=en_US



https://www.facebook.com/CTPaidLeave



https://www.instagram.com/ctpaidleave/



https://twitter.com/CTPaidLeave



https://www.youtube.com/results?search_query=ct+paid+leave

Nancy Barrow:

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. Parkinson's Awareness Month is observed in April, and is an opportunity to increase awareness about the ailment and its symptoms, as well as to support victims national. Parkinson's day is observed on april 11 every year to raise awareness about this medical condition and its severity. Muhammad Ali and Michael J Fox are the most well known people to suffer from Parkinson's disease. And joining in on this conversation about Parkinson's disease is Holly Seymour, the Program Director for the Connecticut Chapter of the American Parkinson's Disease Association, also known as APDA. And Heather Pierce joins us as a caregiver. She supported her dad after his diagnosis of Parkinson's in 2019 and was his caregiver and advocate before he passed in 2021 she's now a board member for APDA and leads a support group where she helps those with PD and their care partners navigate the changes of life with PD. And she also owns a company called ClearView Senior Living advisors. She helps families connect to resources, and she's soon starting school in Vermont to be an end of life doula to further the support she can offer families. She's also a community educator for the Alzheimer's Association. So welcome to The Paid Leave Podcast. Holly and Heather. I'm so sorry aboutYour Dad.

Heather Pierce:

. Thank you for having us.

Holly Seymour:

Thank you Nancy.

Nancy Barrow:

Holly can you give me maybe just a little bit of background? What was your journey that brought you to be the Program Director of the Connecticut chapter of the APDA?

Holly Seymour:

Well, thank you so much for having me here today. I'm honored to represent the Connecticut chapter of APDA as the program director. I have the honor of supporting the PD community with support groups, wellness programs, educational conferences and more. And I take direct calls with requests for information referral services for those impacted by Parkinson's, and kind of how I fell into this role, or, or it was kind of a transition. Back in 2017 I was working in the assisted living world as a sales and marketing director, and I would help families who were interested in moving their loved one into assisted living. And I met a husband named Tony, and he was caring for his wife with Parkinson's, and it was just becoming more than he could manage, and listening to him was my spark to get Parkinson's support group started at the community where I worked. So I reached out to the APDA, and I let them know that I would love to start a Parkinson support group in Glastonbury, where I worked at the time, and I started it, and I love the support APD offered me the resources that were available to the people in my support group. And I had that group in Glastonbury for a few years before transitioning to Farmington, Connecticut, and I was able to facilitate a group there, and I still facilitate that support group. Oh, that's so nice. So I've been a facilitator Since 2017 and in 2021 I reached out to APDA and said, I'd really be interested in joining the board. I thought that it would allow me to kind of elevate the level of services and volunteerism I really craved. So I was able to join the board, and loved the ability to, you know, work with the my fellow board members to advance our mission. And, you know, I just dove right in. It was, it was post pandemic world, so it was a little weird. Everything was on Zoom, and then we slowly transitioned back to having, you know, in person events with masks. And, you know, we navigated all of that. And then they posted a position for program director, and I said, that is me. That is I want, I love helping people. That was kind of when I was in the assisted living sales and marketing role, I really enjoyed helping people that was, that was the most important thing. And I kind of would put on, I'm not a social worker, but I put on the social worker hat, or I put on my nurse hat, and I would try to guide people and give them resources. So I felt like this was just right up my alley. So I made that transition two years ago, and I'm really proud of the progress that I have been able to support in advancing the services we're able to provide Connecticut residents. What is Parkinson's disease? It's a movement disorder. It affects, you know, the ability for people to perform common daily activities. It's a chronic and progressive disease, so it gets worse over time and. It's characterized by common motor symptoms such as tremor, stiffness or rigidity in the muscles, slowness of movement, and it also gives issues with balance and posture. So those are the main hallmark symptoms of Parkinson's. But then there's this. We call it kind of the iceberg. Everything underneath the water is all the things you don't see. So it's the non motor symptoms which can be issues with depression, fatigue, sleep problems, you know, constipation and orthostatic hypotension, all these different things that you can't see on the surface. And I like to clear up. Many people just assume tremor equals Parkinson's. But there are some differentiators, and there are people without tremors that have Parkinson's. So it's, it's, it's a snowflake disease. You know, everybody that you meet with Parkinson's, you know, they're, they have a different journey, they have a different set of symptoms, different progression. So it's, it's kind of a tricky disease to treat, and I think that's why our support groups and our educational programs are so important. It's not a standardized progression or anything like that. So people need a lot of support.

Nancy Barrow:

And are men more prone to it?

Holly Seymour:

Yeah, so there are, there's about a one and a half times more likely to men are more likely to have Parkinson's, and I think this can be for multiple reasons. There's, you know, environmental impacts that are related to Parkinson's. So veterans who served in Vietnam War who were exposed to Agent Orange, those tend to be men, so they're going to have be that they're going to skew the rate of incidents. And then also just workplace exposures can also increase the incidents, but we are seeing quite a few women in our support groups, and they're there and yeah, and they need a different, different level of support, I think, because, because they're women, and where they're the caregivers, usually, so it's a different, different role.

Nancy Barrow:

Are there medications or treatments? What can you do for someone who has Parkinson's?

Holly Seymour:

So with Parkinson's, thereare over 30 medications currently prescribed for for Parkinson's, and they they manage the symptoms, they do not slow progression, and they cannot reverse any of the disease progression thus far. So they're an important component. But I do always recommend people to participate in physical therapy and occupational therapy and speech therapy and to be avid exercisers. Exercise is the best thing for Parkinson's. It's neuroprotective. It can really make a huge impact on their disease progression and slowing and flatlining it, and kind of you want to plateau and progression, that's a good thing. So it's very important that we we preach that every chance we get to let people know that just in the way that they take their their medication in the morning, they need to play in how they're going to exercise that day. It can be difficult for, you know, whatever symptoms are bothering them. But we really try to encourage any exercise in any form, whether it be just walking back and forth to the mailbox, whatever you can do is really important.

Nancy Barrow:

A body in motion stays in motion, right?

Holly Seymour:

That's it. Don't move it don't use it, you lose it. For your body and your brain. You make that recommendation regularly. We have a wonderful network of movement disorder specialists here in Connecticut, from doctors with with Yale, UConn, Hartford Healthcare,Hospital for Special Care, those centers have movement disorder specialists, which are neurologists who took an extra two years to become experts on movement disorders, mainly Parkinson's. For movement disorder specialists, they say 80% of their patients have Parkinson's. So the other movement disorders that exist make up the other 20% of their practice. So they're experts. They see it all day. So we do try to recommend that people with Parkinson's get in to have a movement disorder specialist, neurologist as their care provider. That's not always possible, just because, you know, Doctor shortages and things like that, but you want to be with a neurologist who is comfortable in making, you know the right recommendations for your Parkinson's care, because, as I mentioned earlier, it's a really challenging disease to treat because everybody's so different. So you want somebody who understands the nuance of Parkinson's, and it's not just, oh, here's this pill by seed in six months or see a year. So that's one thing we recommend, and APD does have kind of those recommendations and awareness of all the doctors who are experts in the field. And then beyond Connecticut, we look at the different, you know, movement disorder, societies and things like that, to recommend. I sometimes get calls of, you know, a sister or cousin that lives here in Connecticut and reached out to Connecticut a PDA, but there. Our loved one lives in Pennsylvania, so I'll make a record. I'll look up some resources. So we, we try to be of service to anybody who gives us a call. Plus AP DA national has a hotline, a helpline, that can help people. So, you know, we have this network across the country that can can get people the information they need.

Nancy Barrow:

What about research and clinical trials? Do you have a lot of those?

Holly Seymour:

Yeah, so APDA, you know, we're a grassroots organization, community focused, but you know, we have invested 65 million in research since our inception, and we fund nine centers of advanced research, one of which is here in Connecticut. So at the Yale School of Medicine, our funding supports discovery of genetic targets for precision medicine, drug development using big data and stem cell avatars, stuff way above my my pay grade. But really, really cool things are happening.

Nancy Barrow:

Everything with stem cell to me, is, like, really interesting, you know, yeah,

Holly Seymour:

And biomarker discovery, so, you know, I think there's this research that we're helping fund is hopefully going to bring, you know, get the cause of Parkinson's, you know, their their ideas, but we have to get to the root cause before we can get The cure. So we're working with some of the smartest people in the world to help fund their research. And I actually just yesterday, had the opportunity to visit the Yale School of Medicine Research Center and listen to some of the the scientists behind it. And it's incredible and really exciting to see what's what's happening at the forefront of cutting edge research.

Nancy Barrow:

So Heather, can you tell me the story of your dad and his diagnosis with Parkinson's and your involvement in that journey?

Heather Pierce:

Sure absolutely. So my dad grew up in Western Massachusetts, and he raised my sister and I with my mom in Vermont, and he was a hard worker. He worked six to seven days a week. He was always passionate about things that he did. So if he wanted to build houses, he would build three houses, because he wanted to. That was his passion. He had his own lawn care business. He was a pretty famous bartender up at Killington at the ski resort. Oh, no, I probably know him well. Based mash was his famous drink that he brought up, I think it was in like the Bahamas. It was a drink, and then he brought it to Killington. So he was social. Loved being around people. When he'd come and visit me in Connecticut, he would hang out at the senior living communities that I would work at, and hang out with the residents, and they'd ask him, When are you moving in Bernie? And he just loved it. He loved the concept. And so we always kind of had this plan that if he ever needed Senior Living, he would come, you know, come back to me, and I would help him. So he retired at the age of 75 he had a condo in Florida, and my sister and her children are down there, so he decided to permanently retire and spend his full time there. Shortly after going there, he really didn't like the hot weather. He wasn't really into the the heat. Then he had a fall with his with his bike, and he noticed he had some problems with his shoulder was getting stiff, and he did physical therapy, and I would go down and visit him, and I noticed that he was shuffling as he was walking. And I would go with him to doctor's appointments and recommend, can we get him into a neurologist? Things in Florida just happened a little bit slower. And then one day, I got a phone call from him, and he said, I sold my condo. I'm coming up to Connecticut. I'm going to live with you, and you're going to help me with senior living. And I said, oh boy. So I said, okay, so he came up, and I was working in Farmington with Holly, and I had Holly meet him, and he did not have a diagnosis at the time. I think he had some denial about it, you know, he just didn't share some other symptoms he was having. And I said, Holly, what do you think about this? And I had an idea, but I needed Holly just to kind of look and she goes, I don't know, but I really think it might be Parkinson's. So we saw a movement special disorder, and we went through the DAT scan, which did show that he had Parkinson's.

Nancy Barrow:

is that the only way you can tell you have, you know, is it hard to diagnose?

Heather Pierce:

There's a couple new tests. I know Holly, there's the the skin graft, one that they now do. Do you know much about that?

Holly Seymour:

So the main way Parkinson's is diagnosed is through a clinical assessment from a neurologist or a doctor. So they're going to look at how you move your hands. They're going to watch you walk to see if you have a shuffling gait, you know, not swinging both arms when you walk, if you keep one kind of still at your side and the other swings. That may be a sign of Parkinson's. So they're looking at several of these things when they do a clinical assessment. So that was the main way that Parkinson's was diagnosed. And then 2030, years ago, I don't have that data in front of me, dat scan was developed, and that's where they do kind of like an MRI of the brain, and they're looking at the dopamine producing center of the brain and to see if it lights up in a certain way. You know, you have enough of the dopamine producing cells if it's diminished in any way that would be indicative of Parkinson's. And they're also doing those types of scans to rule out other things that could be causing some other symptoms. So sometimes they're trying to, you know, cross other things off the list, first, making sure you know you don't have a you didn't have a stroke or a tumor or something like that that could be causing those symptoms. First. And then recently, they developed a skin graft test that is looking for alpha synuclein in the skin cells, which is a biomarker for Parkinson's. So that's they take, take some skin cells. I know one of them happens to be on your hand, and it can be very helpful in confirming a diagnosis. And a lot of times, they'll do a clinical assessment first, and if they're you don't always have to get a dad skin or the skin graft test.

Heather Pierce:

He did not have the normal symptoms. So he did not have tremors. He didn't really what he definitely was unique with his symptoms.

Nancy Barrow:

And do like, when you say the dopamine factor of it, right? Like, is that where the depression can come in because you're not releasing enough dopamine. So that's like, where you can really be depressed, is that, yeah, you said that was one of the symptoms.

Holly Seymour:

Yeah depression is definitely a tough symptom. So the by the time most people are diagnosed with Parkinson's, they've lost 70 to 80% of their dopamine producing cells. So it can be a huge change, and that dopamine kind of helps with movement. It helps make it smooth steps to go one in front of the other. You know, it makes you more graceful. Versus without that dopamine, your movements are more clunky. They take more time. And then, you know that the the drive the happiness, you know the get up and go, you just don't have that.

Nancy Barrow:

Did you see that with your your dad Heather?

Heather Pierce:

Yeah. I mean, he, he was not sleeping well at night, so he was really tired during the day. He always had a really great smile on his face. So he was really hard to see, some depression, maybe later on, down, down his journey, but he was definitely tired through the day. I mean, it was exhausting for him,

Holly Seymour:

and sleep issues are common in Parkinson's as well.

Nancy Barrow:

And how was that for you, Heather, you know, helping him with this. And what was the process? Was it like a six month, like, was he there for very long before the diagnosis came.

Heather Pierce:

So, I mean, I definitely think he had it for a couple years before, and I just think that he wasn't very open about some of the things that he was experiencing. But it was hard because it was right before COVID, and it was hard for him to do the exercises, even though he knew it was good for him, it was just really he was exhausted. So then we went through the lockdown, and so as a caregiver, I had to advocate for his care, and I had to advocate for his support. You know, we don't have I have my immediate family, my husband and my children here, but not, you know, his family's in Massachusetts, and we had family in Florida, so it was really solely on me to really help advocate So,

Nancy Barrow:

But Heather, that must have been super hard for you knowing what might be coming for your your dad.

Heather Pierce:

Definitely, yeah, it was, it was super hard because it it was very quick, and I thought we would have had more time with him, but it was definitely very hard.

Nancy Barrow:

So did it progress faster than a normal case? Well, I guess there's no normal case, right? Because you said there's like snowflakes, yeah, they're all different.

Heather Pierce:

He did have a fall, and the fall really, you know, progressed things for him. So unfortunately, that that that, did you know change things for him when he had that fall.

Nancy Barrow:

And how did you take care of yourself, knowing that you know you do all this for a living, right? Like you, you know what is happening, but like, how did you how did you give back to yourself? Did you do that? Did you give yourself time? Because you did have the tools. But sometimes it's hard to.

Heather Pierce:

it's hard because, you know, I think I had Holly and she like, I mean, every day I had her, and I had my husband and my family, and I kept going. I think that's what got me. Up every day is that support, that immediate support. But I, you know, turn to therapy. I was doing it virtually so I'd be in the car before work, lunch break after work, really just helping with coping strategies and really helping with trying to be kinder to myself, because I would always beat myself up over what just happened, or I shouldn't have went away for a couple days, or this wouldn't have happened. Those types of things. I could still see my dad's face when I'd walk in the room, and it would be four in the morning and I'd be there, and he'd be like, Heather, you're here. And just knowing that he was never alone, or he was never like I didn't let him down, because it went from him being my rock to now I had to be his rock, and I never wanted to show weakness or sadness around him. So we laughed a lot, we made a lot of jokes, because that was how we coped, like growing up, and that's how he did so everything, even to end of life, having that hospice team supported him, supported me, and it's it continued for 13 months after he passed, and I still have some of the things in my office, just as little signs and, you know, quotes and things to remind myself that It's okay.

Nancy Barrow:

Connecticut Paid Leave does cover mental health and behavioral health like so if your doctor says, Hey, listen, you know you're suffering from depression, anxiety, those are serious health conditions and can be really life altering, right? It can be overwhelming. And when you're a caregiver to a loved one, especially. So how important is the mental health when you get a diagnosis and beyond for family members and how, how important are the services that Connecticut Paid Leave can do for family members and for someone who just recently got a diagnosis and needs to take some time off and talk to doctors and go get their own therapy?

Holly Seymour:

Yeah, I think mental health needs to be a an important pillar in the support that somebody has. So whether you know exercise is really important, mental health, social support systems, having a really solid healthcare team, and you know that family support is really crucial when when you're challenged with Parkinson's and other chronic diseases. So you have to look at how you can make sure your your cup stays at the right level. I don't know if it has to be full, but you want it to be at least, at least have something in the cup, right? And you know, whether it be talking to your doctor about the burnout or the caregiver stress that you're dealing with, or personally, if you're diagnosed, you know, dealing with the changes, if you need to make workplace accommodations, if you need to, you know, spend some time away from work to focus on what your plan is going to be next. I think it's important to talk to your doctor about that so that you can get the services. And we're so lucky here in Connecticut to have the paid leave program. It's, it's a lifeline for so many families, and we're just excited to help, you know, spread that to the Parkinson's community that, you know, this chronic disease is a lot to take on and and if you need to take time away from work in order to do so, it's here for that.

Nancy Barrow:

Yeah the chronic conditions, like Parkinson's, like, you can take it every year, right? So it's 12 weeks in a year. You can take it all at once if you need to, if it's, you know, it's been a very overwhelming time, or you're hospitalized, or whatever happens. Or you can break it up. You can do it intermittently. You can do a couple weeks here. You can do a couple of weeks there. Reduce schedule from work if you know you're going to be taking afternoons off, you know. So there's real flexibility with the with the program, but it is such a wonderful program for the caregivers too, you know, so they can take time away from work and not worry about paying the bills and and staying with their loved ones so they can, they can do that, which I love. This program I do. We're we are really lucky in Connecticut to have it. My I

Holly Seymour:

I have members of my support group who have had deep brain stimulation, which is a surgery to help manage the symptoms of Parkinson's, and it's a pretty intense it's brain surgery, so the recovery after it can can take several months. So for example, if they're still in their working years, in their 40s, 50s or 60s, they can take the 12 weeks and recover after having that surgery. So something like that is really crucial. And it's great to know that. You know, if they use those 12 weeks up this year, and if next year something happens, it's not, they have it available again, that's really great.

Nancy Barrow:

Yeah I really love that about it. What did you learn about yourself Heather, To go through this process with your father.

Heather Pierce:

I learned that I'm stronger than I thought I was. I really am, and I I just learned that I just can really go through any tough times, you know, and reach out to those people that were there for me. Because, I mean, I would have been really lost without the support, but I'm a lot stronger Yeah!.

Nancy Barrow:

And, and your, your trajectory of life has sort of changed too after that, right?

Heather Pierce:

Yeah, it really did in her own business, yeah, I know,

Nancy Barrow:

right, like, so your trajectory changed because of your dad. What a beautiful gift that was, honestly, you know what I mean?

Heather Pierce:

Yeah after 20 years, I left corporate and started ClearView Senior Living Advisor, and I wanted to help support the families and the seniors that are out there, helping them navigate what they're going through, and maybe it's staying home, or maybe it's senior living, but really, not all communities can support someone to age in place. So really help them find the give them some options that could really be a great fit for them and the resources that are out there. A lot of times I talk to families, even in the support groups setting, where they are like, I'm at a dead end. I don't know where else I can go. And I also have a podcast that we talk with resources that come on, and there are a lot of free resources here in Connecticut that can help you. They come to the home. There's wonderful veteran services. There's just so much, and it's hard when you go on the internet and you Google, because you can get lost in that, search, you can. So if I can help people feel less overwhelmed and really just be supportive, that's a win.

Nancy Barrow:

Yeah. And what advice would you give someone who may be in a caregiving space that you were in for a family member who was just diagnosed with Parkinson's. What advice would you give someone Heather?

Heather Pierce:

I would say, let them lead, and don't push them when they say, No, I think offering support without being pushy or overwhelming, even if you believe you know what's best for them, it's really best to let them let them lead. This is their journey, and we're there to support them.

Holly Seymour:

Yeah, you know there, there's about 12,000 people living in Connecticut with Parkinson's, and the more we can do to reach out and support those, the better a well educated community, I think, can can take their journey into their own hands, and we want to be that support system for them. We're happy to be at the table.

Heather Pierce:

They also think that, you know, you're not alone on this journey. And there's wonderful as we mentioned, movement disorder programs throughout Connecticut. There's so much support through how many, 36 different support groups here in Connecticut, the programs that APDA offers and the resources to really help people feel connected and supportive. You're not alone. And I think if we can get the word out for April and touch some more people, it's great.

Holly Seymour:

All our events are free. We want to make sure they're accessible to everybody. So we bring bring together you know, our community events, like our optimism walks, which are fundraising in nature, but still just a great community event, our education conferences that we do each year, ask the doctor programs, art programs, wellness programs. Our goal is to make make life better for people with Parkinson's and and we do that with offering these types of programs.

Nancy Barrow:

I want to thank my guests, Holly Seymour from the Connecticut Chapter of the American Parkinson's Disease Association, and Heather Pierce, who owns a company called ClearView Senior Living Advisors. And thank you for sharing your personal story about your dad and letting me get to kind of know what kind of person he was, I think that's important to continue keeping him alive and in the memories that you have of him. And I just wanted to thank you for sharing and being so personal about it.

Heather Pierce:

Thank you so much.

Holly Seymour:

Thank you, Nancy,

Nancy Barrow:

For more information or to apply for benefits. Please go to ctpaidleave.org This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.

People on this episode

Head Shot

Nancy Barrow

Host