Navigating Advancing Needs: Planning Ahead with Parkinson’s

Crista Ellis 00:00:00
Hello and welcome to the Parkinson's Foundation's webinar series for veterans living with Parkinson's. I'm Crista Ellis, your host for today's webinar, and helping me behind the scenes are my colleagues Danielle Agpalo and Laura Cameron. More than 110,000 veterans with Parkinson's receive care through the U.S. Department of Veterans Affairs.

Many U.S. military veterans with Parkinson's have access to specialized medical care and financial assistance through the VA. During today's webinar, we will learn how to navigate advancing needs as a veteran living with Parkinson's, how to plan ahead, and resources that are available to support you through care planning.

Today's webinar and the entire Veterans Webinar Series is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these programs possible.

The mission of the Foundation is to make lives better for people with Parkinson's. Whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, we are here to support you. To achieve our mission, we pursue three goals: to improve care for everyone with Parkinson's, to advance research toward a cure, and to empower and educate our global community. Today's program is a great example of one of the things we are doing to help us meet these goals.

The Parkinson's Foundation hosts weekly education and wellness programs through our PD Health @ Home virtual programming. Join us for Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. Most of the PD Health @ Home programs are recorded and posted on the Parkinson's Foundation's YouTube channel. With your smart device, you can scan the QR code on the screen to connect to our YouTube channel, or find out more and register to attend our live PD Health @ Home programs at Parkinson.org/PDHealth.

Part of the Foundation's commitment is to reach every person living with PD. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal to improve the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources, and support. I'd like to invite you to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran.

That website is Parkinson.org/Veterans.

Before we dive into the formal part of the webinar, I'd like to outline today's agenda. We'll start with a presentation from Dr. Reversa Joseph, who will address why and how planning ahead supports dignity, quality of life, and peace of mind. Then we'll move to a second presentation providing an overview of care planning considerations and resources for veterans. We'll conclude our webinar with a question-and-answer session.

And now I'd like to introduce our first presenter for today's program, Dr. Reversa Joseph. She is a board-certified neurologist specializing in movement disorders and intraoperative monitoring. With expertise in Parkinson's disease, she takes an integrative approach to patient care. Dr. Joseph earned her BA from Columbia University, her MD from Georgetown University, and completed her neurology residency at Yale University. She pursued a fellowship in movement disorders at Georgetown, focusing on deep brain stimulation and botulinum toxin therapy, and a fellowship in clinical neurophysiology at the NIH, specializing in intraoperative monitoring.

Currently, she is the director of the Movement Disorders Clinic at the Chalmers P. Wylie VA, where she established a Parkinson's multidisciplinary care team to enhance care for veterans. Dr. Joseph is committed to health equity and addressing disparities in the care of patients with neurodegenerative disorders. Dr. Joseph, thank you for all that you do and for being here with us today.

Oops, I'm sorry. You're muted.

Dr. Reversa Joseph 00:04:11
Oh, okay. Thank you. Thank you so much, Crista, for that introduction. I actually think there's someone else's profile listed here, if you can see that. That's not me.

I'm not a neurological surgeon, but that's okay. Everything you read was correct though, so thank you. Thank you so much. Good afternoon, and thank you all so much for being here. I am honored to kind of walk beside you today as we talk about planning ahead with Parkinson's. This is a conversation more really about empowerment, support, and trying to prepare for the future in a way that really protects your dignity, your independence, and your peace of mind. So, for our caregivers also that are joining us, you truly have a vital role. You are deeply appreciated, and we're all in this together. So I hope that message really is instilled throughout this presentation and this webinar today.

Next slide.

Crista Ellis 00:05:20
You've got control, Doctor.

Dr. Reversa Joseph 00:05:22
Right. Okay, let's see. Okay. Perfect.

So, just for today's talk, we want to really talk about some of the common challenges as Parkinson's progresses, what the journey looks like, even though it is different for each person. That's really something to understand, that no two paths look the same. Advancing does not mean losing hope. It simply means more support and coordination are needed. Our focus really shifts from just controlling symptoms to looking at the whole person.

I just actually got off before this talk with seeing a patient, and that really has to begin to have the conversation about, as a whole person, how can we best address things in the care for our patients? Looking at your emotional well-being, your daily experiences, what your goals are, how we can help you fulfill those goals, and just your quality of life and how we can help to improve that. Hopefully this shift is about putting you as the patient, your values, your voice, at the center of every decision and within our discussion.

Okay.

So, as we talk about understanding advancing Parkinson's disease, I kind of talked about this slide, but advancing really doesn't mean end stage. It really means more support and coordination. And again, shifting the focus to whole-person care.

Common challenges that we can see along the journey as Parkinson's progresses: everyday challenges can increase. That could be more difficulty with walking, with balance, mood changes we can see sometimes, some more changes and challenges with memory, and even just managing fatigue. I have some patients that describe being really tired and more fatigued. These are not signs of weakness; they're just part of the disease, and they're not a reflection of who you are or anything about you or your character. This is just a part of the progression of the disease that we can see.

I think what matters most is that there are strategies and tools and a team approach that can help surround and support the patients to best help you through these challenges along the journey. And I think just understanding that the goal is not necessarily perfection, but it's about making sure that you're safe, making sure that you're comfortable, making sure that you still maintain joy, meaning, and connection along the way, along the way of the journey.

Dr. Reversa Joseph 00:08:28
So, the human impact. This disease affects far more than just movements. Oftentimes patients describe that the tremor and the walking difficulties, these are things that we see, the motor symptoms, but oftentimes the patients say that the motor symptoms may not always be the thing that's most troublesome to them. It can be other things, the non-motor symptoms. So the emotions can be affected, their energy level, their motivation, their relationships that are affected by Parkinson's.

So patients may feel frustrated or discouraged, and that's where the caregivers can really help as well, but the caregivers too may feel stretched thin. I guess what I want to say is that whatever you're feeling is valid. You're doing your best, your caregivers are doing their best, and I think we need to really focus too on mental health because mental health is just as important as the physical health. Some good news is that the connection and the connectedness, staying active in your community, really helps give you purpose. If you have faith-based beliefs, being strong in that, and just maintaining that connection, maintaining joy, plays a huge role in helping to build overall resilience along this journey with Parkinson's.

So, some of the daily routines and independence as needs change, routines may change as well, and the routines may need to change. Sometimes that can mean just simplifying tasks, using adaptive tools. For patients whose tremors are really severe, we have a lot of very interesting, cool things to help with eating, even devices that can help feed the patient if needed, kind of like a robotic device. So there's a lot of just adaptive tools and just asking for support as well.

The thought and just having an understanding that needing help does not mean losing one's independence. It's just that independence can be redefined. It can mean directing your care. You can still be directing your care, you still can make choices, and still stay engaged in the things that really matter to you. But needing help really doesn't have to mean losing independence. Small adjustments can make daily life safer and just more manageable overall.

So as Parkinson's becomes more complex, coordinating care can take a little bit more effort. You have different appointments, may have more medications that are added, may need to communicate with multiple providers. This is where I feel like the VA's interdisciplinary approach really is invaluable. We have a multidisciplinary care team for the management of our Parkinson's patients, and several VAs also have this too. I think this really helps you feel that you're not alone, you're not doing this alone.

For our team here, we have social workers on board on this multidisciplinary team, physical therapists, occupational therapists, speech therapists. We have psychologists. I'm the neurologist. Even neuropsychologists are all on the team to really support patients.

Dr. Reversa Joseph 00:12:23
We discuss patient cases, and when those patients have seen the various providers, they're able to come to the team and talk about various needs that they've identified. As a neurologist, you may tell me some things, but some things we may not get to, or maybe you forget to bring up during our conversation, and this is brought up at another visit with a different provider, and that seems to be so helpful. That can be very helpful in the care of Parkinson's patients. Just making sure that your preferences and your goals are documented and shared, the better your team can honor them.

Okay. Move to the next slide here.

So preparing for what's ahead. Planning ahead protects your peace of mind. When families talk openly about their wishes, about their treatments, about their living situations, their values, it really helps to prevent kind of a crisis decision-making from happening. It reduces stress, and I think most importantly, it ensures that the care you receive truly reflects what your values are and what you would want.

So the role of palliative care. Many people hear palliative care, and they think that it means the end. I don't know how many times I've had conversations with patients and they think that I'm saying that this is the end of their life, and this is just not true. I hope, if anything that we could take away from this webinar, it is that palliative care doesn't mean that you only access this at the end.

Palliative care really is more about supporting you at any stage, helping you manage symptoms, supporting you emotionally and spiritually, your spiritual well-being, and guiding families through decisions. It's not replacing your neurologist. It's just more adding another partner to your entire care team. Our VA palliative care team includes physicians, nurses, social workers, and chaplains who specialize really in improving quality of life. Palliative care is not about giving up. It's really about living well. I hope that can come forward from this webinar.

So long-term planning and balancing independence and support. Really, every person has a vision for how they would want to live. Some want to stay at home as long as possible. Others want the community supportive or assisted living. There's really no right or wrong answer to that. I ask families to really think about what's important for them and what could be most helpful to their family because, again, there's no right or wrong answer. Only the answer fits with what your values and what your comfort level is.

We look at what support is needed, what the VA community resources can help with, and how to make choices before they become urgent. We like to begin that planning and discussion about what your values are and what you would desire. And I think the most important thing is planning really gives you the control. It gives your caregivers also clarity, so they understand what your wishes are. And it really keeps you and your voice at the center of the conversation.

Next slide.

Dr. Reversa Joseph 00:16:27
To build a proactive approach, proactive planning is about documenting your wishes, building a strong circle of support, connecting with the VA and community programs, having ongoing conversations as needs evolve, and really expressing what your wants and goals are, because they could shift, and that's normal. But the best planning is flexible, collaborative, and really centered on what brings you comfort and meaning.

Quality of life really means something different to every person. For some, it's staying active. For others, it's having spiritual wellness, music, family support, cooking, or having time outdoors. Our goal isn't just to extend life. It's really to enhance life, to enhance what's most meaningful to you. Even as Parkinson's progresses, joy is still possible, connection is still meaningful, and purpose still can be found. So that's really important.

The Parkinson's Foundation, the VA Caregiver Support, community respite programs, which I'm sure our next speaker, Amanda, will speak more about, all of these are here to help you navigate this journey. I always remind families that you deserve the support. Even as the caregiver, you deserve the rest, you deserve the help. So lean on these resources. They're designed for you. Don't feel that you can't take advantage of them or that you shouldn't. You should. You deserve the support. I really hope that you, as the caregiver and as families, understand that.

And these are, I think this was shared earlier, but as we kind of wrap up, I hope that some of the key takeaways are that you're not alone and there's a team here walking with you through this journey. Planning ahead is really about empowerment and not fear. Your preferences matter, your voice matters, and there is support for you really at every part of the journey. And we really want to help support you emotionally.

Finally, I just think that there's hope and there's still purpose. There's still advances that are going on in the treatment and the care of Parkinson's, and I think the VA has done a really great job with the caregiver support and the resources that we have, including our multidisciplinary clinics, to really help provide the best care for our patients. Thank you for letting me share this space with you today, and I think there'll be opportunity for questions later.

Crista Ellis 00:19:47
Great. Thank you so much, Dr. Joseph. I appreciate you addressing the essential foundations of planning for care with the advancing needs of Parkinson's. And now that we've explored why planning ahead is so vital, Amanda will walk us through specific steps and tools to make that planning process more accessible and personalized. Amanda Ripke is a senior social worker with the Caregiver Support Program at the VA Central Ohio Healthcare System. Since joining the VA in 2011, she has supported veterans and care partners across geriatrics, extended care, and home-based primary care. She also serves on the VA's Dementia Work Group, the Parkinson's Multidisciplinary Care Team, and as a national project co-lead for the Caregiver Support Program.

Before the VA, Amanda worked with the Central Ohio Area Agency on Aging and volunteered with the Alzheimer's Association as a caregiver support group facilitator. She holds master's degrees in social work and sociology from The Ohio State University and is dedicated to improving quality of life for older adults and their caregivers. Amanda, thank you for being here today.

Amanda Ripke 00:20:53
Thanks for having me. It's so nice. There's 365 people out there, and hopefully we are demystifying a little bit of what the VA has to offer our veterans and their care partners. Just really happy to be able to share some resources with you today. I'm going to be piggybacking a lot on what Dr. Joseph had to say and really going to focus on what it is that we can offer you. I do want to also just take a moment to recognize the service of any veterans on the call.

I know that we have many veterans that are Vietnam-era veterans that unfortunately were exposed to Agent Orange and have Parkinson's as a result of that. We want to stress that these services are services that you deserve, and we want you to take advantage of them as much as you can.

All right. I'm trying to advance my slides.

Crista Ellis 00:22:00
Just a heads up, Amanda, I'm not sure why I'm not able to give you slide control.

Amanda Ripke 00:22:03
Oh, okay.

Crista Ellis 00:22:04
I'll just advance for you.

Amanda Ripke 00:22:05
Okay, go ahead.

So, just to touch on the mission of the Department of the VA, three years ago, I want to say that they did add caregivers to that mission. For those of you on the call that are caregivers, we want you to feel included at the VA. For the veterans on the call, we want your caregivers to join in in your care planning, your discussions with your providers at the VA. And then, as mentioned, I do work locally in Columbus, Ohio, at our VA Caregiver Support Program.

And so you are a package deal is what I tell our veterans and our caregivers, that we need our caregivers to be healthy, physically, emotionally. We want them connected. We want to support them so they can support the veterans that they love.

Next slide.

So, why is it important to ask questions? The first thing that many of you probably already know is the VA is a very complex system. When you're looking at just the healthcare side of the VA, it's hard to know what's available and who to go to for what. Before I came to the VA, working as a social worker at another agency, it seemed impossible to know who to call and what questions to ask. So I encourage folks to ask questions as you move through your journey with Parkinson's and get that information as soon as you can.

I do want to also let you know that, depending on where you live, it could impact some of these services and the availability of some of these services, and that's important to know ahead of time. Don't wait until the day comes that you are asking for in-home services and maybe there's limited options and there's a crisis. We want you to have the information at your fingertips so you know who to call and when to call them.

And really the VA, the way that our programming is set up, especially for folks that are working on aging in place, staying at home, that's where people want to be. We're not set up to respond to a crisis situation. And certainly, we can't always avoid a crisis, right? People unfortunately have falls, or a caregiver becomes ill, or there's a change in your living situation. But know that sometimes these services take time. So the sooner you know about them and maybe dip your toe in and get some services started, the better for you.

Amanda Ripke 00:24:52
So you are kind of in the driver's seat and you have more choice. So again, knowledge is power, and I wrote down a couple of things Dr. Joseph said. We want you guiding and directing your care. And so the sooner you act, the more in control you are. Parkinson's is a condition where you feel like you're losing a lot of control. You may be losing a sense of independence, which a lot of our veterans are fiercely independent people. So we want you to still be in control of decisions about your care. Next slide.

So, these are just some of my tips, things that over the years come to mind. It's important for you to know who to talk to, right? So, like Dr. Joseph said, interdisciplinary interaction is important. Maybe you're going in to see your neurologist because you're feeling like, I'm weaker, I can't stand as long as I used to, let's talk about my treatment options, what's next for me. But you didn't even have time or you didn't even think to talk about, you're forgetting to take your medications. Or the person that used to set up your medications is no longer in the picture. Or you're not feeling safe to drive anymore, and you need some services or resources.

So talk to your medical providers, but get to know at the VA, even if it's not in neurology, get to know who is the RN for your primary care doctor or provider. Who are the people that are sometimes behind the scenes? Get to know who they are, introduce yourself, get their phone number, get their contact information. And get to know the social workers that are available to you.

Social workers oftentimes aren't in the picture unless you ask to speak to them at the VA, or someone that's seeing you, a provider, thinks, 'Hmm, I'm going to refer them to a social worker.' But be proactive. Ask to meet them, have a conversation, get their information.

When to ask questions? Now is the time. If you think of something, ask it. If you're waking up from a dream, write it down. If you're at home, you and your family are talking, write it down. A lot of people do have anxiety and worry about the future. The what-ifs: What's going to happen to me if I can't live in this house anymore? What's going to happen if we have to pay for care? What's going to happen if my daughter moves away and can't help me anymore? Start thinking about those things, things that you're concerned about, and try to take more control over, okay, well, if these concerns happen, here are some options that the VA has given me.

Things that you want to ask your team about: when you have a new symptom or a concern, who should you be calling? Should you be calling directly to the provider? Most of the time you're going to be calling a nurse, a nurse case manager, registered nurse. How do you know if a service is available? A lot of times, this is just kind of how things are at the VA, people don't suggest things proactively when it comes to service.

Amanda Ripke 00:28:32
They kind of wait for the veteran or the caregiver to speak up and ask for a home health aide or ask for that medical equipment. So kind of do your research. Find out what's available. That's why we're giving this talk today, and I'm going to be giving you some more information that you don't have to necessarily remember all in and out. Crista is going to have the recording up, you're going to have resources. I just want you to know what's available so you know what to ask for. There's so much we can do for our patients, and a lot of times we are not doing it soon enough. So we really want you to access these services that you've earned and you deserve as a veteran.

I've already talked about this a little bit, but keep a list of questions. Write down the people that you're talking to. What's their role? How do you get a hold of them? If you normally go in and see your VA providers by yourself, maybe start asking someone that's involved in your care or you intend to be more involved in your care in the future to come with you. Maybe just to see the neurologist, or maybe it's not every time. Maybe it's not just when you have to go to the dentist or whatever the case may be, but have that person be familiar to the folks at the VA. Make them a part of your team. And more and more, the VA is trying to strive for that. The caregiver is part of that interdisciplinary team, and we want them involved early on in the process of managing your Parkinson's. Next slide.

So, these are the folks that you might want to be thinking about as part of your care team at the VA. I mentioned primary care. VA has a name for everything, and so we call primary care the Patient Aligned Care Team, or the PACT team. And so every team, whether you know it or not, when you go to primary care, they're going to have your medical provider, obviously, you're going to have a dedicated RN, and you are going to have a dedicated social worker. Now, that social worker is a social worker typically for two or three providers.

So there could literally be a thousand patients assigned to that social worker. They're not going to always step out and introduce themselves to you, but at any time you can say, 'I'd like to make an appointment with the social worker.' Maybe some of those questions that you jotted down are questions that you're going to meet with your social worker about. And you're going to build some rapport with them, you're going to get to know them, they're going to get to know you. I think that's going to be better for you in the future if you've met them and they remember you. They know what your concerns are, what your goals are.

Obviously, neurology: is there a movement disorder specialist at your VA? On my caseload, anyone with Parkinson's, I'm like, have you met Dr. Joseph? You have Parkinson's, and that is her area of specialty. You really need to be linked with her. So ask those questions. I think a lot of veterans don't want to question authority, let's say, and that's kind of part of your training as someone in the military. But if you're not feeling like the person that you're matched with is the best option for you, ask some questions. See if there's somebody else that maybe is a better fit for you. Some neurology departments in the VA are going to have an embedded social worker.

Here in Columbus, we don't have somebody that's full-time dedicated to neurology. But again, that could be a second social worker that is going to understand maybe your condition more than that primary care social worker. Behavioral health. And so VA is really good about having access to behavioral health. I grew up in a very rural area, and so I know that can be a challenge for folks that live in rural areas, but with our smaller community-based clinics, they have mental health integrated in a primary care team.

Amanda Ripke 00:32:58
And so, it isn't something where you have to have a major mental health crisis to access behavioral health. If you're having some difficulty with the transition and the changes as your Parkinson's progresses, we want you to access behavioral health. That's what they're there for. Don't hesitate to ask for that. And it's not like you have to see them once a week. You set your own cadence with them on how often you feel like you need to check in with the provider. And then for caregivers on the call and for veterans that have caregivers, please, please know that the VA nationally has a very sophisticated, developed caregiver support program. It's been around for over 15 years now in the VA. Every VA has a caregiver support team comprised of social workers, nurses, possibly an occupational therapist or physical therapist. These are people who are there for your caregivers. And we want your caregivers, just like we want you to access services and information quickly, to do the same as caregivers.

We also have geriatrics and extended care services, and those are nationally based. Know that those exist. We'll go over some of those here in a couple slides. Some VAs have what we call a Community Living Center, or a CLC. Get to know where that is. Is there one in your community? If you need to go there for a rehab stay or a long-term care placement, it might be an option down the road.

Or if you need a respite stay so a caregiver can take a break or travel, figure out: Are these things available, and how do you access them? And then most veterans know it's really important to have a trusted veteran service organization there to help you with the benefit side of the VA. So make sure that you know who yours are locally, how to contact them, and how to make an appointment. Write all this down. Make a list that looks like that and write down the numbers, write down the names. Jot notes to yourself as you meet with people so you know who to go to for what. That's the tricky part at the VA, because there are so many moving parts. Next slide.

I wanted to talk a little bit more about advance directives and care planning. We really want to remove the stigma away from the idea of having an advance directive, a healthcare power of attorney, or a living will. Really, everyone who's an adult should have one because again, talking about you being in the driver's seat and you guiding your care, this is one of the most tangible ways that you can do that.

Some folks are curious about VA documentation versus the state that you live in. The VA has its own federally based forms, and those are available to you as a veteran. Those would then be uploaded into your VA medical record. Especially if you're someone who travels, let's say you're a snowbird and you get care at a VA in the north and then you're going down to Florida, that is going to be accessible in your record no matter where you are or what VA you are getting care at.

Now, it depends on the state if the VA documents will be recognized, but it's still your wishes in writing. It's still a document that has been witnessed, and it can carry a lot of weight. I think especially for folks who are getting inpatient care at the VA, let's say you're going to have a surgery at your local VA medical center and then you're going to be there for rehab, having that VA document is great because it is something that is uploaded to your record. Everyone can see it.

But if you're getting some care in the community, which I would say most of our veterans do, I, as a social worker, encourage folks to do their state forms as well because that is something that's going to be universal. We recognize those within the VA, and so will your community hospitals and clinics. Next slide.

The VA has built into our medical record system a note that you can have completed. Basically, you can ask to have what we call a goals of care conversation with your care team. A lot of times this is going to be your primary care. I know Dr. Joseph talked about palliative care. Palliative care, this is just their standard. They're going to be talking about these things if you're a patient with them. But there is a whole list of things that they will talk to you about with goals of care.

And then it is documented in your VA medical record, and it can be changed. As your condition changes, you might change your mind about some treatment options. But the nice thing is you can just have it changed, and it's right there. We want to take the guessing out of what it is you want as the veteran. We want your caregiver, your family, to be empowered to know, if you can't make decisions, what decisions you would want for yourself. So life-sustaining treatment, these are things that are exactly that, right? If you didn't have these, you would be expected to pass away, or it might hasten your death. Things like that are a feeding tube, dialysis if you have a kidney disorder, ventilation. These are all things that nobody likes to talk about. I get it. I totally get it. But we would rather, when you are of sound mind and you are in a calm state, talk about these things. We would rather you do that and get that in writing so people aren't second-guessing if you're in the ER, or you're unconscious, or God forbid, something happens and everyone's shrugging their shoulders. We just want to avoid those situations for you and your loved ones. Next slide.

Amanda Ripke 00:39:53
Goals of care, again, are what do you want to see? If you were to design your future and your later years in life, what is important to you? Is it being able to drive as long as it's safe to drive? Is it being able to still travel? Like I said, if you're a snowbird, to travel south or west for the winter. Is it being able to attend special events? I hear a lot of veterans saying, "I want to see my grandkids graduate college." Let your team know what the things are that you're striving for. We want it to be personalized. We want it to be about you and only you. And then that can be part of your documentation and your medical record as well. Again, this is an ongoing conversation. Things may change as you feel differently or your body is different, but it is important for you to be thinking about these things and talking to people so they're not guessing what it is you would want. Next slide.

Here I know a lot of people are just intimidated to ask their doctors questions, right? They just kind of sit there. They might be a little more passive. There are certain things that maybe you don't understand, but you feel silly to say, "I don't understand what you're telling me. Can you explain it in a different way?" But this is your medical care, and we don't want you leaving an appointment feeling confused or not being able to relay information to your caregiver.

Ask them, for folks with Parkinson's: "Where am I at now? What can we expect in terms of my mobility? Will there be changes with my cognition? What should I be doing to get my home ready to be more adaptable to my condition?" Start thinking about those things so you are informed. Think about what is important to you. What's important to your care? What are your goals? What are things you want to avoid?

A lot of people say, "I never, ever want to go to a nursing home," and that totally makes sense. But to avoid that, certain things have to be in place. We have to make sure you're not falling and breaking a bone or having a head injury. We need to maybe get some services in the home. We want you to age and walk this journey with your Parkinson's in the way that you want, but sometimes we have to get things in place for you to do that.

And then talk to the person that you want to make decisions for you. Don't leave them guessing. Writing it down, whether it's a VA advance directive or the state that you live in, and then putting it in a drawer in the basement under lock and key, which I have had several veterans and their spouses do, that's not going to help anyone, because can we find that document when we need it? Does the person that you named know that you named them? And then do they have a copy of your important documents? Those are things that are really crucial.

And then have some conversations, not just one. Check in with that person that you would want to be your surrogate or your decision maker if you no longer are able to make your own decisions. They really need to know what it is you would want. Their decisions are not what they want for themselves. It's honoring what you want. That's really, really important. The more that you talk about it, the more that everyone on your interdisciplinary team knows, they're going to feel better about providing your care and working with your family. Next slide.

This is going to be a pretty quick review of services available to you as maybe your needs change. You need more assistance with your day-to-day personal care, things that you might need in terms of safety, and being able to stay at home and age in place. The services that I'm going to talk about are nationally available through the VA. I know we have people from all over the country. These are services. So this is what I want to leave you kind of in your toolkit. You can say, "I want to talk to my primary care social worker, and I was in this presentation, and this girl from the VA said I could have a home health aide, right?" That gets the conversation started. That's all you need to remember. And then go from there.

The VA does offer adult day health care. I always tell folks that's kind of like an enhanced senior center. This is for folks that maybe are home all day and feeling very isolated. They want to be more active. They're used to getting out and about and talking to people and doing things. This would be a great option. Also, for folks that maybe aren't safe to be home for hours at a time, maybe their spouse still works part-time or has other obligations. This is dictated by geography. For example, here in Columbus, Ohio, some of our rural counties have an adult day health center and they're wonderful. Some of them don't. So you really just have to start that conversation about asking, "What's available in my area?"

Really, folks who are eligible for the VA to pay for this service for you need to require some assistance with what we call your activities of daily living: getting dressed, your mobility, your hygiene, those kinds of things, or some significant cognitive deficits.

Amanda Ripke 00:46:23
In addition to adult day health care, we offer home health aide services. This isn't a VA person coming to your home. This is a contracted home health agency. Some of you may be using this now, or maybe have used a home health agency for nursing or physical therapy. We contract with an agency that will provide you with a home health aide. That is really focused on personal care for the veteran.

Some veterans that I work with might have a home health aide that comes two or three times a week, helps them with getting in and out of the shower, helps them get washed up, get dressed, maybe makes a meal for them and does a little bit of light homemaking while they're there. We have so many people that use this service through the VA.

And then caregiver respite. Respite, again, is just a fancy word for break. Again, the VA does recognize that caregivers are so important, and caregivers oftentimes put themselves last. So we want to make sure that we're offering services so they can have a break.

A lot of the caregivers that I work with use in-home respite. Again, that would be a home health agency providing an aide to come sit with the veteran for a few hours at a time. That allows the caregiver to, I mean, they could just be outside in their garden. They might be going out to lunch with friends. It doesn't have to be an urgent thing that the respite's for. A lot of caregivers think, "Oh, this is because I need to go to the doctor." No, we just want you to have a break. We don't care what you're doing. We just want you to have a break.

We can also offer that adult day program as respite for our caregivers. And then we can offer some inpatient respite. That's a little more nuanced, and some folks may have a copay for that. But I want you to know it exists. I don't want you to be nervous to ask for it. Ask for these services because, again, you are entitled to a lot of what the VA has to offer you and your caregiver. Next slide.

Other things just to know about, again, to have in your toolkit: we have a whole clinic for spinal cord injury folks, folks that may have a degenerative condition or have had an acute injury. We will pay for skilled care. Again, skilled care is stuff like physical therapy, speech therapy, nursing. We can contract with different agencies to provide that care in your home if you're not able to consistently come to the VA for those kinds of treatments.

We have at our site, and a lot of VAs offer, what we call our geriatric evaluation clinic. Typically that's for folks who are 75 and up. Those are folks that maybe have a lot going on. Maybe you have Parkinson's, but you also have some changes in your cognition. You have a caregiver that's just feeling really stretched, and you guys need a dedicated time to sit and talk to specialists about what are your options, what are your treatment options, and what are your service options.

We're fortunate enough at our VA, and I know a lot of VAs offer, geriatric primary care. Again, that is more focused on our older veterans. Typically, those appointments are going to be a little bit longer with a geriatrician who's trained to work with older adults who maybe have a constellation of issues going on with their health.

Community nursing home is a program that is limited, so it's not available to all of our veterans. But again, I want you to know it's there. I think a lot of our veterans and their family members don't know about this benefit, and it's pretty amazing. To qualify, a veteran has to be at least 70% service connected, and service connected is your disability rating, your percentage of your disability rating, or they need to require care related to their service-connected condition.

Years past, I had a veteran who had Parkinson's who, I think, was rated 50%. The family was trying to get that rating increased, but we were able to have him go to a facility for a short time while his wife was having some health issues because he needed the care related to his Parkinson's. Depending on where you are in the country and how close you are to different VAs, in Columbus, we don't have a Community Living Center, even though we're a pretty urban, big city, so we contract with nursing homes in the community to provide that care. Again, that's short-term stays. That could be long-term. That is something to know about and ask for if you're feeling like you might need that. Next slide.

Home-Based Primary Care is an amazing program. I used to work for that program in the VA, so I'm biased. This is a nationally based program. I always tell people it's kind of like a visiting doctor service through the VA. It's amazing. Primarily, it's going to be our older veterans, when it's become challenging for them to travel. Maybe they have COPD and it's just exhausting for them to move around. Maybe their mobility isn't great and it's just a lot of work to get out of the house for their primary care appointments. This is a wonderful program where VA staff will come to you in your home. Typically, that's going to be a nurse practitioner, a physician assistant, who takes over as your primary care. You'll have a registered nurse. You'll have a social worker. You'll have access to a dietitian, an occupational therapist, a psychologist, and they come to you. They really do a great job of case managing your medical conditions and supporting your caregiver.

Amanda Ripke 00:53:02
Palliative care, as Dr. Joseph talked about, is available through VA, whether it's at your VA or the VA will cover it through community care. For example, here in Columbus, we have a clinic with dedicated staff, so a palliative care specialist, social worker, nurse, and the chaplain also works with that team to help them kind of guide their care. Again, we want you to be in charge, but we want you to have the tools that you need.

VA also will cover hospice care. A lot of that is provided again through contract with a community hospice agency that will come to your home. If you're living close to a VA medical center that has inpatient care, they may have an inpatient hospice unit. I know Dayton, Ohio, has a fabulous inpatient unit for folks that need that level of care. Hospice is scary for a lot of people. People have some misconceptions about it. But again, maybe that's a question you talk to your neurologist about: What does it look like with Parkinson's and hospice? What would that even look like? We just don't want people to wait until they're at the very end of life and not using these services. We want you to have everything available to you as soon as you're eligible for it. Just know that that's another layer that VA can offer. Next slide.

This is kind of a newer program, so you may not have heard about this. Veteran Directed Care, again, is another innovative program that the VA is rolling out. I believe that the goal is for every VA nationally to offer this by the end of our fiscal year 2026. So that would be by October of 2026. It's been very popular here at our VA. Basically, this is giving the veteran or their authorized representative a spending plan. They get a budget to hire who they want to be their care provider.

Instead of going through a home health agency and having a stranger come out and do personal care for you, you can hire someone that's kind of in your network or somebody who has come recommended to you. It takes out that middleman of a home health agency. This has been really popular for folks who are in hard-to-staff areas. So again, more rural-based veterans who might not have a lot of options for home health aide and home services. This is a really great program. You have to be assessed for it and qualify based on your care needs. But again, I want you to know this exists and that this could be an option. We have a lot of folks who might hire a family member through this program to be their care provider, and it's a win-win for everyone. So that program, again, is Veteran Directed Care. Next slide.

I'm not going to read these slides to you, but these are other programs. I guess I just want you to have the full list of everything so you know what's available. These two options on this slide are basically like the VA's version of a group home. Community residential care homes, or CRC homes, are for folks who don't need a lot of personal care, but maybe they need a little support with things like medication management, maybe they need help with meal preparation and getting their laundry done. This is a service, and there's case management typically by a social worker who's coming to visit the home. They're typically linked with mental health or geriatrics. Again, it's going to be case by case in terms of availability and where you live, but I want you to know that these are options for you. The VA doesn't pay for these two options, but it's at a much reduced cost compared to an assisted living, let's say.

The medical foster home is, again, residential-based care, but these are for folks who are more at a nursing home level of care. They need more hands-on care. They need supervision, help with their bathing, maybe feeding themselves. They can't be left alone. That's an option to explore. A lot of our veterans that maybe don't have family that live with them explore this as an option. Next slide.

And then I mentioned the Community Living Center. CLC, that's the VA's name for a VA nursing home. I want to differentiate here between a CLC, Community Living Center, and a state veteran home. The CLC is part of the VA healthcare administration. They're on the VA campus, often connected to a hospital, and that is VA staff providing care to that veteran. The state veterans homes are run by the state that you live in.

For example, here in Ohio, we have two state veterans homes. One's more in the northern side of the state. One's in the southern. Every state gets to enact their own legislation on who's eligible to live in these homes. I could tell you about Ohio's criteria, but it's going to be different in Pennsylvania. It's going to be different in California or Texas. Some do allow your spouse to live with you on campus. I know that. Most have residency requirements, and some have specific service-era requirements. Again, I want you to know that these are an option available to you. Next slide.

Amanda Ripke 00:59:49
The program I work for is this program, VA Caregiver Support. Again, this is a national program, and our identified patients or clients, let's say, are not the veteran. They're actually the caregiver for the veteran. We offer within Caregiver Support two programs. The first is called, again, we just like a long name, the Program of General Caregiver Support Services, or PGCSS.

Basically, if you are caring for a veteran and you're providing some level of supervision or help with their personal care, you can be eligible for this program. Most of the things that we offer through VA do come through primary care referrals, so that's why it's good to get to know your social worker and your primary care team.

But if your spouse, your sister, your neighbor, whoever's helping you with your care, feels like, "I need a little bit of additional support or information or a venue to talk about what this experience is like for me," please ask them to ask for that referral to the general caregiver support program. Here in Columbus, we have a team of three amazing social workers that offer support groups virtually and in person. We just had an amazing luncheon for National Family Caregiver Month for our caregivers. We offer social outings and activities, classes about specific disease processes. We have a caregiver support group at our VA specifically for caregivers of veterans with Parkinson's. Again, I want you to know these things are available so you know what to ask for. Next slide. Excuse me.

This is the program that I specifically work for. Again, a long name: Program of Comprehensive Assistance for Family Caregivers, or PCAFC. You may hear people talk about the VA stipend program for caregivers. That's this program. This is another way that a family member or a live-in caregiver could be compensated to provide care to a veteran. The criteria are a little bit more strict than that Veteran Directed Care program I mentioned. Here the veteran has to be 70% service-connected or higher. That is a requirement. They cannot proceed with further evaluation if they're not rated 70% or more. They need to require significant hands-on care or supervision and live at home, and then also be a patient with the VA because this program is funded through the VA healthcare system.

For me, I have about 50 veterans on my caseload with their caregivers. So I am the caregivers' go-to person, which is like a breath of fresh air for a lot of our caregivers because they're like, "I'll just call my caregiver support nurse or social worker, and they'll help me figure out what I need to do." We're providing that case management to caregivers. We're checking in with them and their veteran every four months, doing a home visit. It's not just about the compensation. It's about that level of support and connectedness that they have, which is a really big weight off their shoulders as they are caring for the veteran and things are changing over time. Next slide.

Some of you may have had lots of interaction with a VA social worker. Some of you might be surprised to hear that you have one assigned to you with primary care. It's always interesting for me, as I'm meeting new people in this role, they'll be like, "Oh, well, what does the social worker do?" or "I didn't even know that this was available to us." I like to tell people that our job is to kind of help you navigate. I know that the VA is like a big bureaucracy. There's a lot of red tape. There's so much information.

Our job is to help you move smoothly through the system and get you linked with the things that you need when you need them. That's why it's important to get to know who are the social workers working with your medical providers. How do I get ahold of them? Veterans, again, we talked about this. Please try to take time to meet your primary care social worker. Make an appointment with them. Maybe you want to talk to them about advance directives. Maybe you have some questions about transportation services. Ask to see them and make an appointment, and they will have time to meet with you and whoever you want to bring to that appointment.

And I always tell caregivers that I work with, please don't be a stranger. I hate it when I find out after the fact that you've been struggling and we're dealing with a complex issue, and you didn't call me, because I want to be there. Like Dr. Joseph said, we want to walk alongside you in real time as you're dealing with things. So when you're not sure who to call, call your social worker. And we're used to that, right? That's our job.

Amanda Ripke 01:05:31
People often apologize: “I’m sorry I’m bothering you. I wasn’t sure who to call.” I mean, this is why we exist.

The VA is the largest employer of social workers in the nation, and we are here because we want to help veterans and their families. Again, just to reiterate, you’re going to have a social worker in your primary care team, but you might have one that you don’t even know about. If you have a psychiatrist, there might be one on your behavioral health team that you can link up with. Some of our bigger VAs are going to have a dedicated neurology social worker or one that specializes in dementia care.

So there could be several available to you. Again, we’re trying to look at the big picture. Our discipline is looking at that whole person that Dr. Joseph talked about. We’re not just looking at you like, “Oh, you’re a person with Parkinson’s.” We’re looking at you like, “Oh, you’re a Vietnam veteran who used to be a construction worker and used to be so active. You hunted and you traveled, and now you’re stuck in your recliner at home, and you’re feeling sad and lonely and hopeless. You have children you can’t see, or your caregiver is stressed out, and you’re running into financial barriers.” We want to know that big picture because we want to link you with all the things that could help you.

Again, that’s what our VA social workers are here for, and we want you to reach out to us. Next slide.

Just to reinforce what I feel is important for you as you navigate your health, as you grow older and as your needs change, get to know who your team is. I know sometimes there’s turnover. Sometimes there are different folks in and out of a position, but these positions are always there. You’re always going to have primary care. You’re always going to have a social worker there. You’re always going to have a caregiver support team. At least figure out the right numbers to call and what they can do for you.

Please, please, please do your advance directives. And if you haven’t looked at yours in 20 years, maybe dust it off and look at it and make sure it still matches what you want for your care. Talk to the people who are important in your life about what you want. Talk to your social worker early. We talked about that.

Plan now. Think about what you want your life to be like six months from now, two years from now, five years from now, and what things you are going to need to be able to be safe and happy over time. Try to avoid that crisis situation because that’s when you have less control, to be honest. You have fewer options. Time may be of the essence, and then you’re not really in the driver’s seat anymore.

Talk about what your wishes are to your family and to your caregivers. Again, think about what you should be doing now for your future self and what you need to have in place for you as things change with your health. Next slide.

Amanda Ripke 01:09:04
These are some good numbers, especially for folks who might be new to the VA or haven’t really interacted with the VA that much. We’ve got our main phone line for the VA. It’s kind of like the 4-1-1 at the top there, and they can guide you. Do you need the benefits side of the VA? Do you need the healthcare side?

Then we have our VA Health Benefits Hotline, and they can guide you to enrollment if you are needing to enroll with the VA for the first time for care, or if you need to figure out where the closest VA clinic is to you. That would be the line to call.

Some folks get really frustrated with the online portal system for veterans care, so that’s the help desk for you there. If you have community care questions about coverage of outside care, that’s their hotline. The VA has a caregiver support line that is staffed by social workers and social work assistants Monday through Friday. A lot of the referrals that we get or folks that we talk to on my team are folks who were like, “I don’t know who to call, and I saw this number.”

So that’s kind of like the first step for caregivers, to call that national number, and then they will refer you directly to the right caregiver team nearest to where you’re located. Another good number for folks to keep is this emergency care reporting number. Probably a lot of you know, if you’ve been to the emergency room or admitted to the hospital, if the VA is going to consider paying for that care, they require that you notify them within 72 hours of the admission or the visit. That is the number you can call to report that. I think that’s just a good one to have.

I have this link on this page and then the next one, but this is a really good tool to find different VA locations geographically by zip code. You can zoom in and out on a map to figure out what’s near where you’re located. Next slide.

Additional helpful websites: geriatrics and extended care. A lot of those home community-based services I referenced, there’s even more detailed information at that website if you really want to dig in and read more. We have our national VA caregiver support site that explains those two programs in more detail. If you do want to apply for that stipend program, there is a very easy, and I’m not kidding, it’s like a two-page form online that you can fill out to apply for the caregiver program for the stipend at that website.

There is more information about advance directives, documents that you can print out to take to appointments to talk about what your wishes are, the healthcare locator tool, and then some handouts that I think would be helpful for folks as they’re planning for the future. It has some prompts for you to write down your wishes at that last website listed there. Next slide.

That is all I have. I know it’s a ton, and I hope I didn’t stress you out. I just want you to know what’s available so you can maybe remember 50% of what I went through and ask for it when you need it at the VA. Please, please, please don’t hesitate to reach out and ask for help early. That is really what we would prefer and want for you. That’s all I have.

Crista Ellis 01:12:54
Okay. Thank you so much, Amanda. I really appreciate the depth of resources that you’re able to speak to that the VA offers. And I just want to share with everyone, you will receive a copy of these slides. So if you didn’t grab a picture or have enough time to write the numbers down, it will be in your inbox in a couple of days, and you’ll have all this information at hand when you’re ready to approach it again.

Dr. Joseph, so glad that you’re still here with us. We got a couple of questions I’d love for us to explore as a team here in the last few minutes that we have together. Dr. Joseph, one of our participants wrote about feeling this sort of unease of recognizing that Parkinson’s, that their trajectory, their life with Parkinson’s, could lead to lack of mobility and really needing someone to make decisions for them. At what point in the journey of Parkinson’s would I, as someone living with Parkinson’s, need to identify a health proxy?

Dr. Reversa Joseph 01:13:57
I think just to address a couple of things in that is that the thought that Parkinson’s disease will always lead to just complete immobility or being bedbound, or the requirement of those things, is not necessarily like that for everyone. Just really trying to instill that Parkinson’s looks different for everyone, and even those who are in the advanced stages of Parkinson’s disease can continue to walk, maybe with the assistance of a walker, or even sometimes needing transfers or helping with a wheelchair for long distances, things of that sort.

But they can still enjoy activities and participate in things and still make meaningful decisions. I think that it’s never too late to begin setting those things up so that you are able to still make the decisions or make sure that your choices in those decisions are being made. Setting those up, like advance directives, living wills, medical power of attorney and goals of care documents, they can really be set up at any time. The VA, with social workers like Amanda talked about, can help you and your family begin to start that process.

So I recommend it at any time because again, it’s a living document that can change. You don’t have to wait to do it when there’s a problem. You can begin working on it, and things can change over time. I’m always a proponent of getting started early.

Oh, can you hear me?

Crista Ellis 01:15:34
I was going to let you finish. We could hear you. And now we hear you really, really well.

Dr. Reversa Joseph 01:15:46
Okay, good. I say that it’s never too early to start on those things. Yes, at any time. I don’t know, Amanda, if you have anything to comment on that.

Amanda Ripke 01:16:00
Yeah, I mean, I shame people. I’m in my mid-40s, and I shame people who are my age and are not doing those documents. I really think that it’s important to do, and the social workers will do it with you right there in the clinic. It doesn’t take a long time. It doesn’t require an attorney to do your medical advance directives. Now, your will, your last will and testament, things of that nature, financial power of attorney, you probably are going to have to see a notary or an attorney outside of the VA.

But we will do it for folks for free at the VA, and you can make an appointment. We want you to do it. We want to empower you to have that and have that off your list of things to do. So just make an appointment.

Crista Ellis 01:16:50
Great. Well, thank you both for encouraging us to get those documents outlined and encouraging us to have those conversations with ourselves and with those who surround us and support us, in whatever stage of Parkinson’s that we might be living or navigating.

Amanda, Dr. Joseph, there’s a lot of conversation around support with a care partner, a caregiver. What about those veterans who do not have a caregiver, a companion or a spouse to navigate this journey of Parkinson’s with? Any recommendations for those of us who may not identify as having the support of a caregiver?

Amanda Ripke 01:17:32
Yes, I think that’s a great question. Over the years I’ve had several veterans who were in those circumstances, and a lot of them, it did turn into that crisis situation. For those of you on the call, if you don’t have that, don’t be ashamed. Don’t feel like there’s something wrong with you because you don’t have those people in your life. It’s even more imperative, though, that you get that team started as soon as possible at the VA, and you know who your people are who can help you.

Like if you’re in the hospital, you’ve got it in your cell phone: “Susie is my primary care social worker at the VA. Call her. She knows what I’m eligible for and what services I currently have.” Put them in your phone and have those people. We can’t replace family, but we can certainly help you and be guides for you.

I do think those state veterans homes, the two that we have in Ohio, are beautiful. The people who work there, a lot of them are veterans or have loved ones who are veterans. Those are really great places to age in place. They have independent level of care, they have assisted living and nursing home care. So you can really kind of be there throughout the progression of your condition.

Crista Ellis 01:19:04
Great. Thanks for addressing that. Another question for you, Dr. Joseph, was wanting to explore more on mobility options for people with Parkinson’s, adaptive devices. Do you know if this is usually covered by the VA?

Dr. Reversa Joseph 01:19:21
It depends on the type of adaptive device. I don’t know if they’re referring specifically to using a walker or a wheelchair, those types of things, or having a motorized scooter or something like that. Yes, those things can be covered depending on, help me with this, Amanda, I don’t know if it’s necessarily considered service connection, but are there certain things? I know some people have copays for certain things and others do not.

Amanda Ripke 01:20:01
Yeah, so DME at the VA, or medical equipment, there’s no copay. There has to be a clinical necessity, though. I’m just going to say this because people don’t know this: the VA will cover a stair glide for you. The VA will cover a ramp for you. We have a program that helps with some of the costs if you have to make a walk-in shower in your home.

What I tell veterans and their families is please do not buy equipment before you ask if the VA will cover it, because we are more flexible than Medicare guidelines for equipment. We have more ability to provide more to folks. We’ll provide grab bars, and we’ll even install them. We’ll send somebody out to put them safely in your home, in your bathroom.

But yeah, I see in some of the chat and some of the Q&A, people are wondering, “Do they have to be service-connected to receive this?” For the most part, no. That nursing home care, you have to be 70% service-connected or more, or need the care for your service-connected condition. In my program, the stipend program, the veteran has to be 70% or more. But really, everything else is you just have to be a patient with the VA. If you are medically in need of something and you qualify, then we’re going to provide it to you.

Dr. Reversa Joseph 01:21:28
Very good. Thank you for that, Amanda. So then, in that case, I don’t know what types of adaptive things they’re mentioning, but we have other devices that help with tremors, like a device called Cala Trio that we use for essential tremor in some patients with Parkinson’s. There are some other wrist-worn devices that we can order depending on whether the patient qualifies for that, or if it is seen that it could be a benefit, that patients can get through the VA.

And then also, if they need other advanced therapies like the pump, there are several pumps on the market now, the pump delivery systems and deep brain stimulation, all of that we can provide through the VA as well.

Crista Ellis 01:22:17
I’m hearing, ask your social worker.

Dr. Reversa Joseph 01:22:20
Yes. I reach out all the time, like, “Can this, how do they do this? How do we do this?” Yes, that’s such a resource, even to providers.

Crista Ellis 01:22:31
Another question about this multidisciplinary team. If you’re trying to build a multidisciplinary care team and not all of those specialists are available at your local VA, what would you recommend?

Dr. Reversa Joseph 01:22:47
That’s a very good question. If they’re not all available at your VA, then the other thing is you could ask, depending on if you’re close to a PADRECC-associated site. I know there was a question on there about what PADRECCs were. That’s Parkinson’s Disease Research, Education and Clinical Centers, which is through the VA. They’re like the VA centers of excellence that are dedicated to caring for patients with Parkinson’s disease. You could request to have an evaluation there.

There are six major centers throughout the U.S., so you may have to go far to get to one. There’s one in Philadelphia, one in Richmond, one in Portland, I think San Francisco, West Los Angeles and Houston. But then if you’re not at any of those particular locations, there are also what we call PADRECC-associated sites. They can be in different regions. For instance, Columbus has one. We were able to get that designation, and that way we have a movement disorder specialist, which is myself. We have social workers, physical therapy, and we have all the team to perform that multidisciplinary care.

So those who do not have Columbus as their particular VA that they would go to, say they’re in Dayton or Marion, or even some come from Cleveland even though there is one in Cleveland, they can go to another PADRECC-associated site that may be two hours or so away from them and not have to travel far to then receive that multidisciplinary care. I see patients who are in different areas two or three hours away who come here for that multidisciplinary clinic. So that’s an option too, if they wanted to stay within the VA system.

Crista Ellis 01:24:49
Great. Thank you for sharing a little bit about the Parkinson’s-specific institutions within the VA. Our previous webinar, for everyone who hasn’t joined it yet, really outlined the relationship between the PADRECCs and the Consortium Centers that are around the United States. So if my team would just put that link in the chat for everyone to see, if you’re curious about these centers that are around the country and their associated sites, feel free to view that webinar and get a better understanding of the network of Parkinson’s-specific VA centers around the country.

We are edging up on the end of our webinar, and I just want to offer an opportunity, Dr. Joseph and Amanda, if there are any final words in regard to planning ahead and navigating advancing needs as Parkinson’s changes and more support is necessary, final words for our community before we end our time together.

Dr. Reversa Joseph 01:25:48
I would just say that hopefully this webinar helped to instill the message that you’re not alone. Especially if your care is being provided here in the VA, we have a lot of resources for you. Even if you don’t think you qualify, still ask for it. Ask about it. Again, get connected with a social worker. You can ask at any time.

I know there was a question about, “My care partner has dementia, so is not able to tell me all the things.” But if you’re going on the visit with them, you can at any time ask the primary care provider to put in a social work consult to get you connected with the caregiver support program. You can ask for that at the visit, and they can put that in because you’re right that your loved one may not be able to speak up and ask about those things. So you as the care partner being an advocate as well is very helpful, and just understanding that this is a partnership and we’re here to support you. Thank you.

Amanda Ripke 01:26:50
Yeah. I echo all of that. And sometimes I think not everyone is well-versed in all of these things, so if someone gives you an answer that doesn’t feel quite right, question it or ask somebody else at the VA, because we don’t want folks to be misguided. If you don’t understand why you’re not eligible for something, be polite but firmly say, “Okay, well, can you explain to me why? Is there more information that you have that I can read about that?”

Again, we are a big system. Sometimes people get busy. Sometimes folks aren’t really truly able to sit down and have these big conversations with you when you’re asking questions. Maybe set aside a time to say, “Okay, well, when’s a good time for us to meet?” Maybe you meet your primary care social worker in passing, and she can’t talk to you right then and there. Ask for an appointment and say, “Can we have some dedicated time to talk about these things that are concerning to me?” This is your healthcare, and if it doesn’t feel right, speak up about it. If you feel like you’re not getting the care that you need or the information that you need.

Crista Ellis 01:28:16
Well, thank you both so much for sharing your time and knowledge and wisdom of years of creating community through Parkinson’s and the work that you’ve dedicated your careers to. I really appreciate your support. And I want to acknowledge that we weren’t able to get to all of the questions today. Please know that our Helpline is staffed, they’ve been trained by the VA, they are Parkinson’s disease specialists as well, and they can help navigate some questions that you might have had in today’s webinar and also get you connected with a VA social worker in your area. So that information is there on the screen for you.

I also want to thank Dr. Joseph and Amanda Ripke for again sharing your time and your knowledge. I really appreciate the thoroughness of getting into the nitty-gritty of planning ahead and why we need to plan ahead, and the resources to help us get there.

Today’s webinar and the entire Veterans Webinar Series is presented with support from the Don and Lorraine Freeberg Foundation. I want to take this time just to thank the Freeberg Foundation for helping to make these programs possible.

The Parkinson’s Foundation wants to hear from you through our My PD Story page. The Foundation shares stories written by anyone in the Parkinson’s disease community. These stories help bring awareness to this life-changing disease and help to inspire others. As a veteran or the loved one of a veteran, your experience with Parkinson’s is unique. We encourage you to submit your PD story and share your experience with others in the community. You can learn more and submit your PD story by visiting Parkinson.org/MyPDStory.

And don’t forget to visit our webpage and explore the resources offered by the Parkinson’s Foundation that can support your navigation of living with Parkinson’s as a veteran. That website is Parkinson.org/Veterans.

Again, if you had a question today that was unanswered, please reach out to our Helpline by calling 1-800-4PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact info to order free resources, educational book series, our hospital safety kit and so much more. We thank you for joining us today, and I hope to see you on the World Wide Web again soon.