In this episode of Connecting the Community with Chris, Affinity CEO, Chris Zayid has an interesting conversation with Ms. Kristin Rossi, CEO of Michigan Parkinson’s Foundation.
Watch the full podcast or read the transcript below to learn about the various resources that are available for people diagnosed or living with Parkinson’s disease, as well as support systems that their caregivers or health aides can access to help manage the condition.
Chris: Hello! Welcome to Connecting the Community with Chris. We have an exciting podcast today with a very special guest – Kristin Rossi, the CEO of Michigan Parkinson’s Foundation.
Miss Rossi is an expert at all aspects of caring for a loved one with Parkinson’s disease.
Kristin: Thank you so much for having me, Chris!
Chris: Kristin and the team over at Michigan Parkinson’s Foundation are focused on making sure that no one with Parkinson’s disease feels isolated or feel alone. This is so important. They do this by focusing on four main pillars that are offered. This exercise can be also with six consistent classes, offered each week, education through virtual and also in-person opportunities all year, and socialization in the form of support groups and having events in-person as well. Respite care assistance is also offered for family members.
Miss Rossi, tell us a little bit of background about yourself.
Kristin: Absolutely! Well, like you said, I’m the CEO of the Michigan Parkinson Foundation. I took over last April and prior to that I worked at the Alzheimer’s Association of Greater Michigan for many years. So, it was a really good Bridge into what I’m doing now, staying with kind of the neurological side of things, but also how to help families who are going through some struggling times with disease-related issues.
Chris: Which is so important. I know a lot of family members, especially with Covid, are struggling with what we call Activities of Daily Living. And this is what we really want to highlight today.
What is actually Parkinson’s Disease?
Kristin: Parkinson’s disease is a neurogenerative disorder affecting the dopamine center of the brain. So, it’s denoted by a lack of dopamine in the brain, which affects mostly movement. Mostly what people think of when they think of Parkinson’s disease is usually a tremor, they think of the motor symptoms, but not all of those are true for everyone. Not everyone with Parkinson’s has a tremor, but you usually do see movement issues, gait instability, issues with flexibility, rigidity, stiffness. And for many people the tremor is there, but along with this disease also comes a whole slew of non-motor symptoms as well, that you kind of have to pay attention to. Depression and anxiety being chief among them.
Chris: And I know that a lot of members are now facing the quality of life, that diminishes with all these conditions that happen. I know some have more or less, but what type of quality of life is affected?
Kristin: When you’re talking about movement so much is affected, and when you’re talking about depression and anxiety and some of the more emotional aspects of this disease, it can affect your day-to-day very much.
Our job is to make sure that people with Parkinson’s and their families are living an optimal quality of life every day. We do this through working with the community to get them the resources they need to make this disease manageable. Putting them in touch with the knowledge, the medical community, the resources that can help them live that life, but also get them in touch with Exercise Programs which has been proven to help people with Parkinson’s. So, that’s part of what we offer.
I know you said that right at the beginning, but we have exercise classes six days a week via zoom, and they’re all taught by people specializing in Parkinson’s – either physical therapists specializing in Parkinson’s or yoga therapy specializing in Parkinson’s.
Chris: So, you are offering resources, but also preventative techniques and tips to help those who are caring for their aging your loved one age in place. There also types of therapy that can help right? Especially with the progression of the disease, as things happen, not everyone can really measure that.
What type of therapies do you recommend?
Kristin: There’s no known cure for the disease or a way to full out prevent the disease. But a lot more research is being done to show that exercise can really slow the progression of the disease and that’s through aerobic exercise, strength training, flexibility training, making sure that your body is moving and you’re staving off those effects. And then in turn it also helps with mood, and it also helps with getting some of those natural endorphins, so that you can create that optimal quality of life.
Chris: That’s something that a lot of family members face. Again, we always say that when your loved one is actually diagnosed with it, that’s probably the first time when you actually should have support. Don’t wait for some things to progress. It’s good to get out there and talk to individuals and that way you can know what happens in five to ten years, so you could be prepared. And all the resources that are available – I know that you guys have a robust website, and you are always constantly updating it to make sure that it’s important to the viewers.
What’s on the website that’s offered?
Kristin: First I’ll say that we’re doing a complete Rebrand. So, it’s about to look all different. And we’re doing a website redesign as well, so our website is about to look a lot different.
But it’s really following those four pillars and I’m just going to go back to those because that’s really the skeleton, the bones of what we do.
The first is the socialization piece – we want to make sure, as you said in the beginning, that nobody with Parkinson’s or their family members truly feel isolated. So, one big offering we have is our support groups. We offer 76 support groups throughout the state and our state has 83 counties, so that’s almost you know one for every county. That’s a great way to keep in touch and stay connected to people. We also have community action committees that we pull together in different areas, largely based on where we have walks. So, Detroit, Lansing, Grand Rapids, Traverse City, where we just have a great showing of people who come together and try to do something with the members of the community for the betterment of the entire Parkinson’s Community throughout the state.
That’s kind of the socialization piece exercise. I know I touched on that a lot, but I really can’t say enough about how that helps to preserve cognition and maintain your ability to do those Activities of Daily Living that you need to do throughout time. So, exercise cannot be overstated but that’s a big pillar, big thing that we do.
We also have education programs. Every third Tuesday of the month we have a virtual education series. We also have in-person education topics that we bring people to in our office. We had one on neuroplasticity and cognition in the fall that was really well-attended, because people want to know how do I preserve my cognition, how do I make sure that I’m doing everything I can to make sure I’m using my brain as much as I can – while I exercise, while I do other activities.
And then we also have a symposium that we do that’s both for the medical community and we provide CMEs and CEUs for that, and then also for the patient community. That’s going to be May 13th this year in Novi. We have lots in terms of Education that we do throughout the year. I’m not even like touching the top of what we do there, but more is on our website.
Finally, we have respite care assistance. That’s often for people in the later stages.
Respite care is basically relief for the person who’s predominantly doing the caregiving. That can come in the form of helping the person with the disease with their Activities of Daily Living – dressing, toileting, showering, things like that. Or it can come in the form of light housework, providing company for someone. It’s really to give that relief to the caregivers. And we offer two thousand dollars per family per year in respite care assistance. And that can be through Home Health agency, that can be through a out of home facility, or it can be through a family caregiver, a family or a friend caregiver at this point as well.
Chris: I know that we’re all trying to juggle how to manage Parkinson’s disease, with the respite care, taking a break, how to get support and all that. It all adds up. So, what can you do to manage Parkinson’s disease?
Kristin: Again, I hate to sound like a broken record, but exercise is a huge piece. The other thing that I tell people, the first thing when they call is, do you have a Movement Disorder Specialist? You kind of have to create your own care team and the first person that should be at the top of that is a Movement Disorder Specialist, someone who is trained, has done further training to know all of the ins and outs of Parkinson’s disease and really knows what treatments are on the forefront, both from a pharmacological standpoint, but also from a therapeutic standpoint.
And that person often can connect you also with a speech therapist, a physical therapist, an Chris: occupational therapist. All the people you kind of need on your team to have that optimal quality of life.
Chris: Let’s dive into what actually does a support group look like.
Kristin: It’s a little bit different in every Community, but I think some people hear support group and they think, okay, I’ll sit in a circle, and we’ll talk about our feelings. And that does happen to us. But the other side of that is that many of our support groups bring in guest speakers that can be doctors from their Community, Movement Disorder Specialists that are coming to talk about non-motor symptoms and how they can be managed. It can be the local rocksteady boxing coach to come in and show people a couple of techniques that they can use or tell more about their class. It could be someone to talk about vision problems, it could be any number of things. The support group facilitators get a guest speaker list from us and oftentimes they’re getting guests to come in and talk to the group about things that are affecting the entire group.
The other thing that happens at a lot of support groups which I think is really neat, is a couple times a year they’ll break up into two groups – the person with Parkinson’s dealing with the condition and the caregiver, and it’ll allow those two groups to talk uniquely about what’s going on in their lives.
Chris: I love hearing that. Because the caretaker needs to have self-care too. They have to take care of themselves in order to care for their parents. I’m a big believer in that, because it’s not easy to be able to do that 24/7. So, if you come back and regroup and take care of your loved one, it’s good for them too, because then they’re not getting stressed.
Kristin: Depression and anxiety is very prevalent among caregivers as well, and you can see why it’s a really tough job.
Chris: It is. So, it’s good to prepare yourself mentally, just as much as physically.
There are training modules on your website – that’s another resource you guys offer. What are the videos intended for and how can they help?
Kristin: The videos are really intended for Assisted Living facilities, home health aides, so that they can get trained in everything related to Parkinson’s disease. That’s you know Parkinson’s 101, that gets into speech and swallowing, the dining room experience, and even at the end – delusions and hallucinations like that, which are very real parts of this disease in certain stages.
And how to work with people the best that you can. The idea is really to make sure that the aid that’s working with the person with Parkinson’s is fully prepared to handle their needs in the moment. We’ve also put that on our YouTube channel where we have lots of on-demand videos as well that can be found in the top right corner of our website. It’s right there for everybody, because we want to make sure that family caregivers can use these too.
Chris: That’s my next question – what do you offer to the caregiver, what type of resources?
Kristin: A lot of our programs throughout the year are targeted to caregivers. Part of what we’re going to be doing at the Symposium is targeted to caregivers as well. But really that respite care assistance is what we find helps caregivers most. It’s not only the financial assistance but it’s the connection that we make with the caregiver right at the beginning of that phone call and kind of following their journey through how their loved ones doing.
Chris: Not everyone could pay for caregiving services. In Michigan it’s not covered 100% unless they have a certain specific type of insurance, like long-term care insurance for example. So, they have to dive into learning how to be a good caregiver if they’re going to be with them till end of life. I think it’s much so much needed.
I know that there’s fundraisers that are very valuable in the community. This is just another thing that we would want the community to know about, because it’s like we can’t grow unless we’re together. We grow together as a community and that’s kind of what our mission is. Not just provide preventative therapy, but also give education out and also come together, and let’s talk about it, and then let’s come up with a plan.
What advice would you give somebody who has just had a loved one get diagnosed with Parkinson’s disease?
Kristin: I’d say to call us because we have tons of programs and tons of information. You mentioned our fundraising events as well and growing as a community, and that’s how I really see our walks. We do four walks throughout the state every year and we’re trying to grow that program as well. But I call those our biggest support groups, because you look out in Metro Detroit, you see five to six hundred people who are dealing with the same things that you’re dealing with, and you can lean on each other a little bit more, you can trade resources a little bit more, and it’s really all for the benefit of our programs and services of getting out into the Parkinson’s community.
Chris: And you’re not alone. Like I said, a lot of family members deal with depression. You could be in your mid-20s, and your loved ones have Parkinson’s and you’re the caretaker and now you’re not going out with your friends and are possibly not going to the college that you want to go to, because you’re caring for your parents. So, there’s a lot of situational things, but when you do go into these walks, I picked up plenty of them myself, you just feel like – it’s a big world, there’s a lot of people out there that are dealing with the same thing and it’s maybe meet your best friend there, somebody that could call and talk to about the situation you’re in.
Kristin: Absolutely! We always say we want people to feel like they’re wrapped up in a big MPF hug, a big Michigan Park Foundation hug because that’s the feeling that we created these events. We bring everyone together, we have kind of a unifying piece of it and kind of like a you can rely on us, you can rely on your neighbor, we can come together as a community. But the worst thing you can do is be isolated or stay in the shadows. We’re trying to bring this disease out of darkness, we’re trying to bring the stigma out of it, so we can deal with it up front, and we can get people the resources that they need, because this disease can be well-managed if you have the right people in your corner, if you have the right care team.
Chris: That’s great! Thank you so much for joining us.
Kristin: Absolutely! Thank you for having me. This is wonderful.
Chris: I’m sure we’ll have another podcast together. What’s the best way for someone to reach out?
Kristin: I would say, visit our website first – parkinsonsmi.org, and we’ve got our number at the top, we’ve got our on-demand Library there. We have everything that you could need on our website. But just be aware it will be changing. It’ll be the same great information but just in a different style, coming soon.
Chris: It was an honor to have you here. Thank you.
Kristin: Thank you so much Chris.