In October 2020, Parkinson Association of Northern California (PANC) hosted a virtual conference on Parkinson’s disease and its many motor and non-motor symptoms. One session was a panel discussion on multidisciplinary care. In this session, the panelists talked about the importance of multidisciplinary care, the “lifetime model” approach to team care, nutrition for Parkinson’s disease (PD), emotional symptoms of PD, speech/voice therapy, and how people can get involved in PD research.
This panel discussion was recorded and can be found on PANC’s YouTube.
Stanford Parkinson’s Community Outreach has a lot of resources on nutrition for people with Parkinson’s here.
And here is a link to speech and voice therapies for Parkinson’s disease.
I listened to this panel and am sharing my notes below.
– August Besser
“PANC Medical Panel” – Discussion Notes
Conference Host: Parkinson Association of Northern California
October 24, 2020
Summary by August Besser, Stanford Parkinson’s Community Outreach
This discussion included seven panelists and the moderator:
- Sarah Pinasco, physical therapist, Kaiser Permanente
- Carolyn Loveridge, care partner and wife of former PANC board of directors
- Dr. Joshua Dayanathan, movement disorder specialist, UC Davis
- Dr. Beverly Chang, geriatric psychiatrist
- Erin Lavin, registered dietician, UC Davis
- Erin Kight, social worker, UC Davis
- Marty Mooney-Conkle, speech therapist, Dignity Health
- Moderator: Dr. Norika Malhado-Chang, movement disorder specialist, UC Davis
Norika Malhado-Chang, MD: Let’s get started with our first question, which is about the theme of this panel: multidisciplinary care. When is it appropriate to involve a team like this? Is it for advanced Parkinson’s disease, or is it also applicable to the newly diagnosed? Sarah, as a physical therapist you embrace the “lifetime model,” can you tell us what that means?
Sarah Pinasco: Initially with Parkinson’s they advise people with PD to not exercise, to rest. But then they realized this was a horrible idea. What we need to be doing is getting people moving. Because of physical therapy, we have the option to evaluate someone early on in the disease process, as early as possible. And we can get a benchmark for where you are, in terms of balance, strength, and stability. Over the course of time, you can do those same tasks and we can see if anything pops up, even a mild abnormality. Our model is very similar to that of a dentist: you come in and you get a check-up. If there is anything going on, we can manage it. If we need to follow up, I will see you again in 3 to 6 months. It gives me a chance to follow up if I notice something, like a difficulty swallowing water in the waiting room, and then I can take care of you and refer you to a speech language pathologist if you need it.
Dr. Malhado-Chang: And Marty, you also embrace the “lifetime model”. Tell us a little bit why it is important for someone to work on their speech and swallowing at all stages of the disease.
Marty Mooney-Conkle: We do something very similar to Erin at our clinic, where we want someone to come in as soon as possible so we can get their benchmark. A big part of quality of life is communication, and so we want to get in there to help you maintain those quality-of-life characteristics. Exercise is the key, and so we want to get you an exercise programs to keep those skills as high up as we can. We also do check inns, but ours are a little farther out: we usually check up on someone after 6 to 12 months.
Dr. Malhado-Chang: Thank you so much. Dr. Davanathan, we call ourselves “movement disorder neurologists.” But as we learn more and more about this disease, it seems like it’s becoming a little more of an outdated term. Initially, Parkinson’s was seen as a condition primarily affecting mobility, but there’s so much more than that. What are some of the non-motor symptoms you are helping patients evaluate?
Dr. Davanathan: We need that multidisciplinary approach because there are so many non-motor symptoms that can affect an individual with Parkinson’s. Things like gastrointestinal issues, constipation, sleep related issues with things like REM sleep behavior disorder, or restless leg syndrome. Cognitive changes, mood changes like depression and anxiety… You really need that team approach to help address all of these issues.
Dr. Malhado-Chang: Thank you. Erin, we know that our audience has a lot of questions about diet, nutrition, and supplements. Can you tell us what constitutes an ideal diet for a person with Parkinson’s, and what are some of the nutritional concerns that might come up?
Erin Lavin: When I am interacting or working with someone who has Parkinson’s, I like to focus on what their goals are first. Are we looking at: “How can I eat in a way that may delay disease progression? How can I eat in a way that helps with the symptom management?” We focus on what your goals are, so we can see how we can tailor your nutrition to work for you the best way we can. So, when it comes to looking at nutrition, in terms of delaying disease progression, a lot of the research that we’ve seen has shown that eating a diet with fresh fruit and vegetables (and especially avoiding canned as much as you can). Eating fish at least once a week. Eating whole grains and whole fibers is also beneficial. Constipation is also a big struggle with Parkinson’s, and can actually proceed diagnosis by several years. Managing that with increased fiber intake, like fresh fruits and veggies, whole beans, whole grains, can all access with constipation issues. All of these things play a role and kind of integrate well together. There’s also been some research into increase fiber in the morning helping with someone’s levodopa levels throughout the day.
Dr. Malhado-Chang: You mentioned fiber a lot, and I’m always looking for the best ways to tell my patients to increase their fiber. What is the best way that you recommend people to do this?
Erin Lavin: Whole foods are always my first preference, because each fiber feeds a different bacterium within your gut microbiome. Being a wide variety and indulging in a wide variety of foods, really indulgence these different bacteria. There is a lot of research looking into the Mediterranean diet, which is really common for neurological conditions. This diet consists of fresh fruits and veggies, fish, whole grains, quinoa, beans, and nuts. Actually, those last couple of foods are shown to increase certain nutrients that are commonly deficient an in low levels for people with Parkinson’s. Foods are really the best way to balance the microbiome within any given person.
Carolyn Loveridge: And make sure to keep an eye when you eat certain foods and take certain medicines, to help those balance out and give you better results.
Dr. Malhado-Chang: Thank you, Carolyn. While we’re talking, you have actually really lived this. You have a lot of real-life experience with living with someone with Parkinson’s and being a caregiver to Parkinson’s. And diet, as I’m thinking about it, you were the one in charge of preparing foods for your partner. What were the more challenging aspects of being a care person?
Carolyn Loveridge: You should not get discouraged. You should cater to your person with Parkinson’s and help them feel like you are paying attention to their needs. You just fill them in with good food. One of the things as Parkinson’s progresses, a lot of things end up happening like drooling. I ended up getting my partner a big bib to help with the drooling, and that’s the one thing I actually ended up passing along to other people caring for someone with Parkinson’s because they said they actually needed something like that.
Dr. Malhado-Chang: Next, let’s go to Dr. Beverly Chang. Dr. Chang, you are our psychiatric expert here. What are some of the more common emotional symptoms that accompany Parkinson’s disease, and at what stages?
Dr. Beverly Chang: I like to think of anxiety and depression being two main things that I see a lot of in my office. I make an analogy to the same thing that happens with the G.I. system, where often times those can be presenting features of Parkinson’s. So, I will maybe see a lot of people who have a history of anxiety and depression at some low-lying level. Years before they’re actually diagnosed and experiencing symptoms like tremors, they will say that they had a particularly worse period of depression that didn’t feel like it normally did, or that their anxiety was much different that time compared to other times. That is because the same neurotransmitters involved in Parkinson’s disease are depleted during episodes of anxiety and depression. It can be very difficult with depression, unless there is a specialist for Parkinson’s involved, because the symptoms of depression greatly overlap with the symptoms of Parkinson’s. It’s part of my job to tease out what is solely depression and what is also part of Parkinson’s. We actually look for things like hopelessness and loss, and while those sound bad, they help us identify who is experiencing Parkinson’s and how we can help them. There are medications like SSRIs, selective serotonin reuptake inhibitors. And anxiety and Parkinson’s are its own little world as well. I’ll hear comments from people that have had generalized anxiety before: “What will this be like 10 years from now? How will this progress?” Now we get into physical symptoms of anxiety because these coincide with anticipation of a medication wearing off. I’ve had patients experience a panic attack. We do have medications for that too. The trouble is we have to balance the different medications and their side effects to see which provides the most benefit and the least discomfort.
Dr. Malhado-Chang: Thank you, Dr. Chang. You mention depression, and I’ve also heard that apathy is a common symptom amongst people with Parkinson’s. What is the difference between apathy and depression?
Dr. Chang: Apathy can be a symptom of depression, but it can exist on its own. Apathy is associated with any sort of neurological condition, and we see a general lack of motivation. Frequently, when you ask a person with apathy if they are depressed, they will say they are fine., They will exhibit symptoms of depression; they will not engage with anything. And this is so exacerbating for family members. Carolyn, I’m not sure if you experienced this yourself. I think my best advice for people with apathy is to not get too stressed out because that also feeds back into less optimal health outcomes for the person affected as well as the family members and loved ones. Routines are helpful, always having a regular schedule. And even if someone is not completely involved in an activity, it’s good to stimulate their senses. But not to be overstimulating.
Dr. Malhado-Chang: It sounds like the management for apathy is not necessarily the same as depression. But would you use the same medications for both, or is it more of a lifestyle or behavioral change?
Dr. Chang: It’s definitely a lifestyle change. If depression contributes to apathy, it’s definitely worthwhile to treat that. It won’t resolve all of the apathy that we see, and I have some families that come to me inquiring about something that will just “perk up” a family member. Sometimes those will work; they’re typically stimulants, but those have their own side effects like raising blood pressure and heart rate.
Sarah Pinasco: I would make a good argument for exercise to help with feeling apathy. It’s like you were talking about earlier with routine. Routine can go into exercise, and people with apathy are more receptive to group activities. They have this schedule and kind of community built in, instead of an obligation that’s just on their schedule.
Dr. Malhado-Chang: I really agree with that. Because it’s not your doctor or your loved one nagging at you for not being active, it’s your peers and your friends around you. These are your people, and you can all do this together. The feeling of not being motivated, not having that initiative to do all you want to do… I would definitely feel that depression, anxiety, and psychosis are the most challenging symptoms a person with Parkinson’s can experience. And it doesn’t just affect them, but the people around them, like their family members and loved ones.
Dr. Malhado-Chang: I would like to move now to our social worker, Erin Kight. Maybe you can tell us a little bit about how a social worker can help someone navigate these challenging symptoms.
Erin Kight: As a social worker, we are available at all stages. It’s actually great for us to start when someone is initially diagnosed or starting to have some symptoms, because we can start talking about some long-term planning. We can talk about advance directives, what are some of the individual’s goals. We can have those conversations with families. As things continue to change and progress, that can cause some stress on the caregivers in the family, and looking at resources at that point to be able to identify what we can do to support that family is a big piece of that process. Throughout that, social work and help you be able to connect with those resources, provide that support, and connect with those people who can help you on that journey.
Dr. Malhado-Chang: Can you give us a sense of what kind of resources out there are available through social work?
Erin Kight: There’s actually quite a few resources. PANC is actually a great resource, they have support classes and plenty of material on Parkinson’s. The “Parkinson’s Wise” online exercise classes are all quite helpful too. Del Oro focuses on support for caregivers to neurological conditions, and provide one-on-one counseling. There are a variety of resources out there.
Dr. Malhado-Chang: How do we know when it’s time to call in for extra help? Where do we go for that?
Carolyn Loveridge: Get to a support group. A lot of support groups are on Zoom, because we’re not in-person. A support group is where you would find all sorts of resources, to connect with people and see what’s available. So, participate in support groups. I continue to participate in a caregiver support group even though my husband has passed on. Participate as a caregiver in a caregiver support group, and participate as a person in a Parkinson’s support group. Don’t wait for someone to come to you, get out there and try.
Erin Kight: A good place to start is actually just talking to your provider. Start the conversation with them, because they can then connect you with your social worker and with the rest of your team. From there, you can work together to figure out what the best option for you would be. There are so many different resources out there for support and for families. You can hire caregivers at home; there’s facilities, day programs, respite programs. I think talking to your team is a great place to start.
Dr. Malhado-Chang: How do I get involved? What if I want to participate in research or clinical trials?
Dr. Devanathan: I think the first step is to voice your desire to get involved in research with your neurologist. They should be able to at least outline what their particular institution has in regards to research for Parkinson’s. We commonly utilize a website called trials.gov to find research studies. Your neurologist will be able to assess whether you are a good candidate for study, given studies are looking for a particular characteristic or age range. I always advise patients that the big desire someone should have in being involved with a research trial is contributing to the science. We’re doing this research trial to figure out if a treatment or a new drug of some kind is helpful in this patient population. We don’t know on the front end if it is going to be helpful. So really, that’s the purpose of doing these studies. Some indirect benefit that people get in being in research. You get more clinical attention; you get more visits. But really, the real drive for why you want to be in a research study is to help contribute to the Parkinson’s community.
Dr. Malhado-Chang: And here at UC Davis, for some trials you might have to change your medications, for some trials your medications can stay the same. If people want to get involved, who should they contact?
Dr. Devanathan: We have great research coordinators at UC Davis. If you want to get started, you should contact your neurologist, who can get in touch with the research sites, who have the research coordinator reach out to the potential patient and they can get started.
Dr. Malhado-Chang: Speaking of research, there has been a lot of research into supplements. Would you like to touch on that research and what supplements can do for Parkinson’s?
Erin Lavin: there is a lot of great research on supplements and Parkinson’s, and that is pretty common for most neurodegenerative diseases as well. For the most part, with most supplements, there is little to no risk. You do have to be mindful with supplement interaction with medication. Turmeric, a common supplement, has been known to interfere with some medications and compete with them for absorption. Similarly, with fish oil, there is little risk in ingesting it, but there are some complications with medications. Supplements are not always as substitution for the whole food. When you look at a fish oil capsule and compare it to a full fish, there is some discrepancy in the appearance.
Dr. Devanathan: One thing that comes up a lot for me, is the question surrounding dopamine-boosting supplements and whether those are appropriate for patients. I usually counsel patients to avoid those, especially those ones where there is some concern that they could potentially interact with our other dopamine-boosting medications. I also have a concern that supplements aren’t regulated as much as pharmaceutical companies, so they aren’t regulated by the FDA.
Erin Lavin: If you are going to buy a supplement, look for ones that have the label “USP”. Those ones are third-party tested and third-party regulated. It’s hard to know what you’re really paying for, and supplements can be really expensive. When you find one with a USP label, that means it is tested, and you are getting what you paid for.
Dr. Malhado-Chang: Can you tell us a little about protein, and how we might need to regulate protein intake during the day?
Erin Lavin: Proteins can interact and compete for absorption with levodopa in our system. I think of proteins as a castle: castles are built of all these different building blocks: those are amino acids. Every castle and every amino acid look different. Some castles get along well, and some castles do not get along at all. When we think of protein as a castle, some proteins like animal meats do not get along well with our medications. If someone is having some trouble with their “on” and “off” times, it’s never a bad idea to take a look at the times that they eat proteins. Especially animal proteins at the end of the day. In Japan, they are looking at plant-based proteins and seeing if those castles get along better with the medications people are taking.
Dr. Malhado-Chang: What is LSVT? How can I improve the volume of my voice?
Marty Mooney-Conkle: “LSVT” stands for the “Lee Silverman Voice Treatment” program. It’s a highly intensive program: four days a week for four consecutive weeks, an hour each time. You have homework the day that you see me, and two sets of homework on the days that you don’t see me. The focus about this program is that we’re just targeting one thing: improving your volume. We work on the mismatch of the perception that your voice sounds higher than it really is. It had a lot of secondary benefits: it improves our vocal quality, speech clarity, intonation, and facial expression. It’s also shown to improve our swallowing function. It has been shown to have really good results and staying power for up to two years.