Dan Keller 0:02 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.
A diagnosis of Parkinson's disease affects the whole family, from the time of diagnosis throughout the course of the disease. Adult children of someone with PD are often rightly concerned, and they can be very helpful, although possibly at times needing to tread lightly. I spoke with social worker Kelly Arne of Vanderbilt University Medical Center in Nashville about how grown children can learn about the disease, become part of their parent's support team, and manage their relationship with their parent right from the start and throughout the changing course of the disease.
Kelly Arne 1:26 I think one of the most important reasons to get involved early is that it's really hard for children to see changes in their parents, to see that vulnerability show up in their parents. And whether it's a tremor or some changes in their gait or balance, without education, children may unnecessarily worry, they may misunderstand the symptoms, and even worse, recommend harmful treatments, and we know that we can make it easy to get that information.
Dan Keller 2:01 Is there anything unique about the child's relationship and caring for a parent with PD?
Kelly Arne 2:10 I think it can be important to remember that your family member's probably been dealing with some of the changes with Parkinson's disease for a while, and they have some coping mechanisms from their past that they're using. So it's difficult territory to manage as a child to know how to step in and be helpful without feeling like you're trying to take over or give unnecessary information.
Dan Keller 2:36 Do the adult children find it stressful watching their parents in decline or trying to plan all these things that they think may come along?
Kelly Arne 2:46 I think it can get quite overwhelming, and that's why it's so important to get involved early before the problems are causing challenges in quality of life and the ability of your parent to navigate their life either physically or mentally. And reaching out to the Parkinson's Foundation and getting some basic information on the disease and the disease process can really help in that process.
Dan Keller 3:14 Are there other good resources to learn about it, and maybe even pass along to their parents?
Kelly Arne 3:21 When you get involved early, there are great organizations. I mean, the Parkinson's Foundation—I like that they have a helpline, they have booklets that have informational sheets that you can pull out to have conversations with your parent. The Michael J. Fox Foundation, the Davis Phinney Foundation. Everyone learns differently. The information can be overwhelming, so looking in your own community, looking in your parents' community, and seeing what resources... maybe attending a meeting, an exercise group. Those are ways that might be more gentle to introduce your parent to great resources that can help them live their best life with Parkinson's.
Dan Keller 4:06 What are some of the most important tips about caring for a parent with Parkinson's?
Kelly Arne 4:12 I think the most important tip is finding a way to get involved early. That is when your parent still has the opportunity to see a physical therapist, to see an occupational therapist, to get involved in exercise programs. The treatment for Parkinson's disease is dopamine replacement, but without exercise and awareness and movement, those medications may not be as effective.
Dan Keller 4:39 Many older people don't exercise at all. Is this kind of a revelation to them, and also a little bit of a stumbling block to begin exercise?
Kelly Arne 4:48 I call exercise one of those four-letter words. No one ever wants to hear it, and no one ever feels like they're doing enough or doing it right. So, when we talk about exercise, I think it's better to think about staying connected in your daily life, whether it's getting out to go to the grocery, taking a walk. There's no sense in talking about exercise unless it's something someone is going to do.
I will say that I find some of the Parkinson's exercise programs especially good because they also bring in the component of community. Support groups can be frightening, especially early in the disease, and sometimes joining one of the exercise programs—and we have very specific programs, Rock Steady Boxing, Dance for PD, and those—you know that you're targeting those areas, you're going to be with other people, and that brings an energy and an excitement to the program.
Dan Keller 5:46 If a parent doesn't want to talk about their Parkinson's disease or their diagnosis, whether it's that they don't want to face it themselves or they don't want to burden their children, do you have any suggestions for bringing up the conversation?
Kelly Arne 5:59 I think that's a great question. Every one of us know our parents, and sometimes we may be excited to jump in there and want to make plans for our parents, but being very sensitive to the way they want to handle this disease. It may mean that you reach out if there is a spouse or a partner involved, you may reach out to that person. If you are going to be the primary care partner for your adult parent, then maybe a baby step of trying to find out if you can attend doctor's appointments.
That way you can get on the chart, so that with HIPAA compliance you can contact the doctor if you need to, if something happened, you would have that access, and that may be an outing that you plan, and you have lunch together, and do it in a more gentle way, rather than saying somebody needs to go to the doctor with you. But I would say getting someone to attend doctor's appointments is extremely important, even early on, and establishing that there's so much to learn. We all know Parkinson's varies with each person, and the only way that you're going to get that information to understand how it's affecting your loved one is to be present in those appointments.
Dan Keller 7:13 You had alluded to resources that are available, but most of those that we talked about are online. If a parent is not online, doesn't use a computer, how can they get some of the information you're talking about?
Kelly Arne 7:27 That's where the Parkinson's Foundation really steps up, because they have the helpline. If you call that helpline, they can immediately let you know if there is a Center of Excellence in your parents' area and connect you directly. At Vanderbilt, that's frequently what I do—talk to children, talk to caregivers, and provide that personal touch. I can even meet with them individually, and that's a great resource that is sometimes very helpful for families.
Dan Keller 7:58 Is there ever a time that parents feel like their adult children are trying to control them, that they don't want to either face it or burden them? What would you suggest? Can somebody mediate, or how do you go about making that connection?
Kelly Arne 8:12 That's such a tricky question. Definitely, as a parent, we always feel like we're the parents, and we want to keep taking care of our children, so again I think when you do approach parents, pick up one of the books, call the helpline, and get some concrete advice, especially if you have a specific difficulty that you're facing in talking with your parent, that could help, and mostly be gentle and listen. Listen to what your parent has to say, because some of the symptoms of Parkinson's can be misleading.
You may see some difficulty in your parent navigating their cell phone, navigating a remote control, which seems so simple, but that is a very specific area of cognition that is challenged in Parkinson's disease. It has nothing to do with a global dementia, which is often the fear, and why an adult child may jump in. So, again, we get back to that first question of why getting resources and information early, so that you don't overreact, and that you do have resources at hand to address those challenges.
Dan Keller 9:24 Parkinson's is progressive, but each case is different in terms of symptoms or speed of progression, all sorts of things. So, how can the child get a handle on what might be coming without fearing everything that could come?
Kelly Arne 9:41 That's another tricky question. I think Parkinson's disease is a disease of uncertainties, and we saw with the pandemic how much we struggle with uncertainty, and that is what we are facing with Parkinson's disease. However, the way the parent adjusts to those changes the first couple of years can give the doctor some ideas about the type subset, the type of progression we're looking at.
So, again, being at a doctor's visit, making sure the pertinent information is being shared. Again, your parent may not see the significance of those changes in themselves, because the good thing, Parkinson's is slowly progressing. The bad thing, when something slowly progresses, we take it on and may not see how it's challenging us. So, again, using "I" statements: "Dad, I noticed that when you go up those stairs, you're having trouble," rather than just observing that, but the way you introduce things to parents can help them hear it better.
Dan Keller 10:48 Are there other things that they should be looking for? You know, when they last have seen their parent to now, something else comes up. What sort of signs are there that the disease may be progressing, or they need help in certain domains?
Kelly Arne 11:03 Certainly, when a person begins to fall, if they are having falls, we're looking at some dangerous areas. You may want to schedule a longer visit. A lot of times, our visits happen around holidays or celebratory events, and with Parkinson's disease, when the adrenaline is flowing, patients can look very different at different times of the day. So, if you can plan an overnight visit and an extended visit, you may get a better sense of what's really happening in the home. By the end of the day, their fatigue is going to set in, and that will be a harder time. Timing these conversations, timing these visits can be also very significant.
Dan Keller 11:46 Besides physical signs, are there other things that they should be aware of, like mood changes and thinking and memory issues?
Kelly Arne 11:57 Mood changes are an especial interest of mine as a social worker. I want people to feel good. If you don't feel like doing things, it doesn't matter how well we treat your Parkinson's disease; you won't have that motivation. It does get tricky with the decreased movement. You may see changes in the face that suggest your parent is depressed, and again, conversations can help. "Do you feel like doing things?"
Apathy is somewhat of a loss of interest, it doesn't necessarily mean your parent is depressed. Mood changes have such an effect on quality of life that yes, I would be looking for those. When you go to visit, are you able to get your parent out of the house and engage with things? Are they finding ways to adapt to the changes in their body, so that they continue to do things they enjoy?
The second part, I think, is most people, their greatest fear is the area of cognition, and the fear of what a dementia might look like. There are cognitive changes that we see in Parkinson's disease, but they have a limited effect. When you start seeing more significant changes, some confusion if the parent isn't sure where they are, if your parent is seeing things that aren't there, that can be very alarming, and you would want to bring it to the attention of the doctor and get early intervention for those things.
Dan Keller 13:24 If the child lives some distance from the parent, I would think they'd probably be on edge at various times, or all times, that something might happen. Is there a way to line up local resources, so if something happens, you already have a plan in place?
Kelly Arne 13:41 As we get to the tail end of our baby boomer generation, you start to see more and more resources opening up. There are elder care advisors, there are elder care companies where you can, for a smaller monthly fee, have some oversight, where if there was an emergency, someone would accompany your loved one. Those might be resources that you look into as a backup plan. Cell phones make that a little bit easier. Alarms, going to visit different types of living facilities when you go to visit your loved one, but again, getting back to: are there resources in your parents' community? Because if they get involved with other people through exercise or through support groups, then they will have more of a built-in support system. They will have someone to reach out to and be getting the education they need to adapt to changes.
Dan Keller 14:37 Anything interesting or important to add?
Kelly Arne 14:40 I think Parkinson's disease is a really scary diagnosis. There's a lot of misunderstanding about Parkinson's disease, and I would want to say that we have so much hope. And even though there's not a cure for Parkinson's—and everyone's first question is, "When are we going to have a cure?"—we have so many great treatments. We know what the body is not producing enough of, and if we can get connected with patients and their families early and get them involved in exercise and involved with physical therapy that is specific to their disease process, we can help them adapt to those changes and live a very good quality of life and help empower them to know how to seek help when they do need it.
Dan Keller 15:25 Great, all useful practical information. Thank you.
A good starting point for adult children to come up to speed when a parent is diagnosed is a fact sheet called My Parent Has Parkinson's: What Does It Mean? You can find it by searching our PD Library at parkinson.org/pdlibrary. There you'll also find our podcast episodes titled Parenting and Parkinson's, Raising Children While Living with Parkinson's, and Talking to Children about Parkinson's. To learn more on the subject, if you search on "Caring and Coping," you can find worksheets that will help you organize several aspects of your parent's routine. You can also download our book, called Caring and Coping: A Care Partner's Guide to Parkinson's Disease, to your Kindle, read it online, or order a free physical copy of it.
As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's. As Kelly said, if you have a specific question about your parent with PD, or just a concern that you can't quite put your finger on the kind of information you need, call the helpline, and they can probably find you some good resources. 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.
