Dan Keller 0:07 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
People with Parkinson's disease experience different needs depending on their specific situations, and needs will change along the way on their Parkinson's journey. There are many helpful resources available if one knows where to look, but one problem is not knowing they even exist. The Parkinson's Foundation helpline has a wealth of information free for the asking. A helpline information specialist can explore the caller's needs, recommend resources right on the website at parkinson.org, as well as suggest where else to turn for help, including medical facilities, community organizations, and government agencies.
I spoke with social worker Amanda Janicke, who is an information specialist on the helpline. She gives insights into the breadth and depth of knowledge of resources that the helpline can provide to people with Parkinson's from the time of diagnosis onward.
Amanda Janicke 1:43 It's a whole new world when you're diagnosed with Parkinson's, so I don't know that you'd possibly be aware of all that's out there. But that's why we're here at the Parkinson's Foundation on the helpline: to help you learn about what resources are available. So, we hope that you'd call us and just let us know what you're struggling with or what your questions are, and we can guide you to the resources that might be most beneficial at that time.
Dan Keller 2:07 Besides agencies and professional resources, does the idea of resources extend to your network, your family, other places you would normally depend on?
Amanda Janicke 2:18 Absolutely, those informal resources are sometimes the most rich. You know, we're thinking about the local library, the local municipal office for your town. If you're working, it's your employee assistance program, or you know, families, friends, people that know people that have had Parkinson's and know maybe some ideas or tips to share.
I think the tip I'd say is remembering that you have your own resourcefulness inside. You know, you've lived a life before your diagnosis of Parkinson's, and you've overcome obstacles, you've met challenges, and found your way through things. And that diagnosis can make you question a lot of what you know, what you think is true in the world. I think being able to rely on yourself, build yourself up with those resources, can make a big impact in how confident you feel moving forward with the disease.
Dan Keller 3:14 In terms of agencies and sort of official resources, is it usually the social worker who's the point person?
Amanda Janicke 3:21 Yeah, usually social workers are considered the resource specialists, but there are other folks that are savvy with finding resources, so they're your information and referral. Sometimes the nurses on staff are also very savvy with finding resources, but typically I'd say try to locate that social worker, whether it's on your medical team or in local nonprofit agencies. They're usually really skillful with finding resources.
Dan Keller 3:49 It sounds like there's a wealth of resources, but where do you start? What's the resource for the resources?
Amanda Janicke 3:56 I think where I'd start is asking yourself honestly, "Where am I struggling? Where's my hardship right now?" Those pain points, and just kind of allowing yourself to be curious about what's out there. I say, don't try to think that you have to be the resource specialist. There are people out there that can help you, and just being willing to say that you need help, I think, is a place to start.
Dan Keller 4:20 Do people sometimes think they're imposing on friends or their network when actually those people sometimes feel honored to be asked to pitch in?
Amanda Janicke 4:32 Absolutely. I think most of the time family and friends are sort of looking to you for cues about what sort of help you need, or how they can be useful to you, and they're sort of waiting on the edge of their seats, like, "What can I do for this person?" They care about you, they want to do something. And so if you say, "It would help if you could make this phone call and find out what they have to offer," I think they jump at that chance to be useful to you in some way.
Dan Keller 5:00 People often say, "Give me a call if I can do anything for you," but does it help to be specific? Because when you leave it open-ended, the person may not even know what to ask you.
Amanda Janicke 5:11 Yeah, and it puts a lot on the person with PD to know what they need. But I think to again share, be vulnerable about where you're having a hard time. You know, "I'm having a hard time affording this medication. Can you make a couple of calls and maybe find out if there's some assistance available for that?" Or, "I'm having a hard time with housekeeping or with getting a ride to the doctor. Can you call around to find out what resources are available?" I think if you are open about where you're having a hard time, then that'll give people a little direction on what resources to look for that might be helpful to you.
Dan Keller 5:46 What is out there? What are the agencies or the resources that are specifically set up to help people?
Amanda Janicke 5:54 There's a lot. I think one place to start, if we're thinking broadly, is the Area Agency on Aging in your community. They will have a whole host of resources designed to help you stay independent and safe at home, but they're information and referral specialists, so if they don't have the resource, they're probably going to know what those local resources are. So that's not PD-specific.
But for PD-specific resources, please call us at the helpline at the Parkinson's Foundation, and we can guide you. But if you're a veteran, the VA has a whole host of resources, social workers that are ready and available to guide you to what's available.
I also suggest asking your healthcare provider, "Is there someone on staff that I can ask about resources?" So it might not be the doctor in front of you that is going to be your resource specialist, but they might be able to guide you to the social worker on staff, and I think that's true across other health conditions that you might have. So, if you have a vision impairment, ask your ophthalmologist if there's a resource specialist that they can guide you to, or a local nonprofit that specializes. So think broadly about what might be available, and just sort of ask the people you know, the people you interact with, about who can help you with connecting with resources.
Dan Keller 7:15 Most state and local municipalities have an agency on aging. What can someone expect from them?
Amanda Janicke 7:22 Sure. So when you call the Area Agency on Aging, they're going to try to understand what you're looking for. Usually, you'll have an appointment with a case manager—sometimes that's a social worker—and they'll get a sense of where you're struggling and try to plug you in with different programs that they offer. Sometimes there are eligibility components that you would need to meet for some of their programs, not always, but they're going to offer resources broadly, so again, it wouldn't be Parkinson's-specific, but to help you with aging or disability-related concerns.
Dan Keller 7:58 Can adult children call for their parents? I mean, would they be eligible?
Amanda Janicke 8:04 I would say call. If you're an adult child, call the Area Agency on Aging, find out what they do, and how they can help someone in your parents' situation. They may need to set up an appointment to meet directly with your parent, but I would say ideally you could be part of that conversation just to be an advocate during that conversation with the Area Agency on Aging staff and your parent.
Dan Keller 8:28 People have problems other than medical—insurance, health insurance, financial, all sorts of things. Are these Area Agencies on Aging qualified to refer you or help you directly?
Amanda Janicke 8:41 Yes. So across the country there are volunteer health insurance counselors, and this is unbiased. So if you're looking for support comparing health insurance plans, or you know, thinking about switching from traditional Medicare to private, you know, Medicare Part C, or vice versa, call your local Area Agency on Aging. Let them know that you are looking for some support with health insurance, or if you're uninsured or underinsured, or need any sort of financial assistance, that's usually where we would suggest as a place to turn, generally speaking.
Dan Keller 9:19 What about employee assistance programs?
Amanda Janicke 9:22 A great resource if you have one. Call, even again, I say, like, even if you don't know what you need, call and find out what can they do for you, and that might help you recognize, you know, "Okay, well, if I need this, or when I confront this issue, then I can reach out to the EAP."
Dan Keller 9:39 You had mentioned the Veterans Affairs Administration. How comprehensive are they, and what can they do?
Amanda Janicke 9:45 Very comprehensive, especially when we're thinking about people with Parkinson's. They offer access to specialist support groups, and then there's a social worker, there's a caregiver coordinator. So I would say, reach out to the VA and ask more about how they can support you holistically, whether it's your PD or other health conditions, but they're a robust resource.
Dan Keller 10:09 It seems that social workers are almost like librarians—they are great for finding information and knowing information. Let's flip that around. How good are librarians at helping people in these situations?
Amanda Janicke 10:23 Yeah, I think that's a great question. Interestingly, some libraries are starting to hire social workers, but I think that similar skill set, it's about being curious and just giving it a try, searching, calling around, and trying to find the right fit, trying to find what you're looking for.
I think it's a great idea to keep the library in mind too when you're thinking about technology. I mean, we've had a lot of virtual resources become available to us over the past two years because of the pandemic, but some people do struggle with feeling comfortable and confident online, and your local library is a great resource for accessing some of those online resources. So let them know; they can help you maybe feel a little more comfortable navigating online.
Dan Keller 11:07 Are Parkinson's support groups sort of a source of group knowledge?
Amanda Janicke 11:13 Oh yeah, those support groups—I mean, this is firsthand knowledge, insider knowledge, people that have been there. And I think that's an opportunity. Going to a support group, you're going to learn, but you're also going to teach people and share, and I think that helps you tap into the wisdom that you've accrued. You know, if you're a few years in with Parkinson's, or many years in with Parkinson's, or if you're a care partner to someone with Parkinson's, you'll be hearing tips from other people, but you have so much to give, and there are so many people that need that kind of wisdom that you have.
Dan Keller 11:45 When's a good time to start looking and lining up resources?
Amanda Janicke 11:50 Early. Early, before you need something. I would just, again, be curious, just get a sense of what's out there. I think that helps you have some peace of mind that you don't have to wait for the crisis. You shouldn't wait for the crisis. Ideally, call us, ask us what we know, kind of open your eyes to what's in the community, and keep a notebook of that. And just keep it in mind as time goes on, as you're, you know, experiencing a hardship of some sort, that there are people out there that want to help.
Dan Keller 12:21 Does that apply to the issue of eligibility? Do you have to, like, plan ahead so that now you're signed up for something when the need comes up?
Amanda Janicke 12:29 That's a great point. Another good reason to plan ahead is there are some programs that require you to take certain steps to become eligible, and that can take some time. So if you wait until there's a crisis, then you may struggle with being able to get access to a certain resource, and then also you might learn that, "I could have accessed that resource years ago when I was having a hard time or struggling in this way." So, don't wait, don't put it off if you're in any way having some sort of struggle. Reach out, learn about what's out there, and find out what you need to do to get access to that resource.
Dan Keller 13:04 Do people sometimes tend to ignore their other problems because they're so much focused on Parkinson's that they don't get help for things that are affecting everybody?
Amanda Janicke 13:15 I think so. I mean, I think we have to remember that you are more than your PD. You know, PD is one important part of your life, of course, but you're so much more than that PD. And I think maximizing resources to me is looking at your whole life, your identity as a whole person, and nourishing those other parts to your life, and looking at resources that will help you feel like a whole person beyond the PD.
Dan Keller 13:41 If you were to give a nutshell message, what would you tell people about all of this resource acquisition?
Amanda Janicke 13:48 I think starting early, being curious, allowing yourself to ask for help is key, and then just sort of knowing that you get to choose what resources you access and make use of. You might be guided to some resources that just aren't a good fit for you, and that's your right to say, "You know what, not now." But it's okay to ask for help and to receive it.
Dan Keller 14:10 I suppose once you've accumulated resources, you become a resource for other people.
Amanda Janicke 14:14 Absolutely, absolutely. I think that's the key reason why peer-to-peer support for people with Parkinson's is so important. You've learned so much. There are other people that are struggling, and you can teach them and share what you've learned.
Dan Keller 14:28 Anything we've missed or interesting to add?
Amanda Janicke 14:31 My tip here is to kind of locate where those social workers are, where those resource-savvy folks are, and it's in your internal network—who would love to do some of the searching for you, and get them on your team.
Dan Keller 14:43 Great, thank you. Very practical.
Our helpline information specialist can answer your questions and direct you to resources in English or Spanish at 1-800-473-4636 from 9am to 7pm Eastern Time, or via email at helpline@parkinson.org. Another way to see some of what the helpline offers is available at our website; just search for "helpline." There you'll find a link called "Getting Outside Help" and resources specifically for veterans by clicking on "Veterans and Parkinson's." If you click on "Explore Veterans Benefits," you'll find a webinar titled Veterans and PD: What You Need to Know. It explores the resources and support services that veterans have access to through the Veterans Administration and the Parkinson's Foundation. You can also visit parkinson.org/helpline for more information.
Area Agencies on Aging can provide information and referrals, case management benefits, health insurance counseling, and family caregiver support programs. To find one in your area, do a web search on Area Agency on Aging and your state, city, or county name.
News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.
At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.
