Dr. James Beck 00:00:00
If you're on Facebook Live watching this, you won't be able to see this and be able to participate in the poll, but we'll get that poll up there right now.
Basically, I want to understand who is in the audience. We have 450 people right now. Numbers keep creeping up because we just started at the top of the hour. We've got over 2,800 people registered. Go on and select who you are. We'll leave that going for a little bit and find out who's joined us on our webinar.
We'll bring that down when we're done.
Okay, if we can show the results and share that with everyone, that would be great. Most of the people here, not surprisingly, are people with Parkinson's disease. I see a fair number, about a quarter of the people, are health professionals. Great.
You're on time to get that CEU. There's going to be a great presentation. Jenna Iseringhausen is a fantastic speaker, and she's got a lot of information to share. Let's move on to our next poll real quick. If you're a person with Parkinson's or a care partner, give us a sense of your year of diagnosis. Just want to get a sense, for those in the audience, where you may be within your disease. Go in and click. These are broad categories. I'm just trying to get us, again, a sense of who the audience is, and this is something the speaker can utilize as well. Give it a few more seconds, and then let's post those results live if we can. Great.
Exactly the audience we're looking for, those who've just been recently diagnosed in the last year. Not that there isn't great information here in this Expert Briefing, and I'm glad we have our community here, but I know that Jenna Iseringhausen has got some great information for those who have just been recently diagnosed. Without further ado, let me introduce our speaker for our Expert Briefing today. Jenna Iseringhausen is a registered nurse at NYU Langone Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, which is a Parkinson's Foundation Center of Excellence. She's part of a faculty group practice nurse and PF Center of Excellence coordinator at NYU.
She received her Bachelor of Science in Nursing at Ohio State University, and Jenna Iseringhausen has previous experience as a DBS nurse clinical coordinator at Mount Sinai. This is where she first encountered the PD population and really developed her passion for caring for those with movement disorders and understanding the importance of a holistic approach and interdisciplinary approach, which is something that the Foundation is really advocating as well. She integrates her passion into her day-to-day approach to care for both people with Parkinson's and their care partners as well.
Regularly, she leads a psychoeducational support group for people with Parkinson's and their care partners, organizes monthly interdisciplinary rounds discussing patient care with staff, as well as managing and arranging educational seminars for physicians, administrators and supportive staff. She is involved in current studies that happen at the Fresco Institute and helps continue the educational advancement of the division to ensure that there's compassionate, safe and efficient care of people who come to NYU. Jenna is also an active nurse faculty member of our Parkinson's Foundation Allied Team Training for Parkinson's.
Without further ado, let me introduce Jenna. Jenna, welcome to our last and final Expert Briefing for the series.
Jenna Iseringhausen 00:03:42
Thank you so much. I really appreciate it. Looking forward to getting started here. That was a great introduction. Thank you, Jim.
Dr. James Beck 00:03:51
Absolutely.
Jenna Iseringhausen 00:03:53
Thank you all for joining. I really appreciate it. Today we're going to discuss being newly diagnosed and ways that we can help you continue to live your best life with Parkinson's.
Again, Jim did say that my only disclosure is that I am a Parkinson's Foundation Allied Team Training for Parkinson's faculty member.
Today, our learning objectives. We're going to review and help you understand the importance of patient education, support and development from point of diagnosis. We'll also help you gain knowledge and raise awareness of preventing and also monitoring for caregiver or care partner burden or burnout. Understand the palliative care model in Parkinson's disease and also the interdisciplinary team approach.
I just want to review a little bit some of the basics of Parkinson's disease and how a diagnosis is made. There are four cardinal symptoms of Parkinson's disease. What I mean by that is four main symptoms that a physician would look for when diagnosing an individual with PD. Those four main symptoms are slowness, or what you might hear in a physician's office called bradykinesia; stiffness or rigidity; loss of balance, or what we call postural instability; and tremor. When we talk about tremor, we're talking more about a resting tremor.
Some people, you may hear it called a pill-rolling tremor. It's more of this tremor between thumb and index finger, less of the tremor that's actually with action. Not when you're using the hands. You might see it more when your hands are resting on your lap or even while you're walking and having that hand rested by your side. In order to be diagnosed with Parkinson's, an individual would need to have slowness plus one of these other cardinal symptoms in order to have a formal diagnosis of Parkinson's.
Keep in mind as well that there's no blood test at this point for a PD diagnosis. The way that Parkinson's is diagnosed is typically through that collection of history, so going over when those symptoms started for you, and then reviewing the clinical findings - so what that movement exam in the office with the physician, what that information provides.
There are also a number of non-motor symptoms. When I'm talking about non-motor, I mean those non-physical symptoms, so they don't have to do with movement, that people with Parkinson's can experience. Keep in mind here as well that these are all possible symptoms. Each person with PD is unique. No one Parkinson's disease is exactly the same as another. These non-motor symptoms are possible symptoms. These could also occur many years before any of those movement symptoms are actually noticed.
That would include symptoms such as constipation, loss of smell or maybe impairment of smell, sleep changes, which could include insomnia, so difficulty falling asleep, difficulty staying asleep, also things that we hear like thrashing in bed or yelling out in your sleep or talking in sleep, active vivid dreams. Also mood changes, and that includes depression and anxiety, and also apathy at times as well, which is that lack of motivation or drive to do activities and to do tasks. Speech and memory changes can also occur, and memory changes could be something as small as even a little bit of forgetfulness, some of those more subtle changes.
Jenna Iseringhausen 00:07:43
How do we help an individual cope with a diagnosis? It can be challenging, especially when depression, anxiety and apathy, those mood changes, can also be from the Parkinson's disease or be a part of that package. But it can also be from the diagnosis, that fear of what's next, the anxieties to what are those next steps and what to expect moving forward, and then also that apathy, where maybe you feel less motivated to go out and do things that you previously enjoyed.
Other times, by getting a diagnosis, that can be reassuring because now you have an answer to these symptoms maybe that you've had for a year or two years, however long it might have been. That can actually, at times, make people feel better because they do have some type of answer from there. Our main goal then at that point when someone's diagnosed is to provide education, to connect with resources and support and, therefore, to empower. I truly believe that knowledge is power. The more that we're educating and providing those resources, the more that you have that capability to advocate for yourself as well and for your care.
When we talk about supportive care, it really needs to be started from point of diagnosis. It's something that might change a little bit over time, depending on what the needs are at particular points in life. It's really something that, if someone is diagnosed with Parkinson's disease, for instance, or another chronic illness, supportive care is crucial in order to maintain quality of life and to help continue to do the things that you enjoy in life as well. Again, that type of comfort and support will look a little bit different depending on where you are in life now and where you might be in five to 10 years as well, but the goal is that overall you are getting that support.
Physical and psychological needs are very much connected to quality of life. If an individual is having difficulty with maybe certain tasks at work or focusing on certain things or even socializing and doing those extracurriculars they previously enjoyed, then that's going to impair quality of life as well. Again, we're going to educate, connect to resources and provide the necessary tools to try to ensure that you can continue doing those things that you enjoy.
Oftentimes, you might hear the term palliative care, which there's quite a stigma actually against palliative care, I think, where people think of hospice care when they think of palliative. But here when we're talking about palliative, we're talking about that supportive care. Again, that can change a little bit over time with what you specifically need, but it's that supportive care that we're looking for.
The key here as well is looking at each individual's needs and what your individual goals are as well. That's how we're really going to deliver that optimal care. Also pulling in the full team. When I'm talking about interdisciplinary team, we're talking about the movement specialist, a nurse, social worker and also the rehab team, which would include physical therapy, occupational therapy and speech and language pathology as well. These are all very crucial team members and all have different areas that they would gear toward as well for what your specific needs are.
We're going to look at the readiness to learn. If someone's newly diagnosed with Parkinson's, I'm sure for those of you that do have Parkinson's, it can be a little bit scary at first maybe getting that diagnosis and maybe, at times, not quite ready to absorb a lot of information.
Jenna Iseringhausen 00:11:40
It's really important to gauge the timing of when to provide that additional assistance and education and resources as well, to make sure that person is fully ready to take in any of those support systems that you're providing them. Also looking at not just the person with Parkinson's, but looking at their care partner and seeing what their emotional and physical needs are as well. Then providing, again, that individualized education and support and supporting them throughout that process to meet goals.
The Parkinson's Foundation has this great Five Steps to Live Better Today, and I think it pertains really well to what we're talking about. Looking at what you as a person with Parkinson's or as a care partner, or as a healthcare professional if you're working with people who have Parkinson's, helping them set goals. Again, looking at what you're prioritizing, what are the things you really want to make sure that you're doing on a day-to-day that make you happy. Then finding a support system, people you can turn to and talk with.
Then we're going to talk more today about creating healthy habits, being active not just physically, but also mentally and socially, and how important that is. Then finding an expert in Parkinson's disease. You'll hear us talk about today the movement disorder specialist. To tell you a little bit about that, a movement specialist is a neurologist, but someone who has special and additional training on working with individuals that have Parkinson's as well as other movement disorders.
Typically, from there, they're very well-versed in the medications to manage these different disease processes, as well as current research and different therapies too. Of course, general neurologists are fabulous as well, so it's really whoever you feel comfortable with. But movement disorder specialists do have that additional training as well in Parkinson's disease.
Setting your goals again, that's the priority, looking at what you want with your day-to-day. We're going to evaluate that together as a team and then educate and provide resources in order to help you meet those goals.
Establishing healthy habits early, of course, that's very important. Important to make that a habit, really, so that it becomes a part of your day-to-day. Exercise is a huge one, which I'm sure many people have read about and heard about. We'll also talk about diet and dental hygiene and the importance of those as well. Finding those hobbies you enjoy and then the additional support system.
It's of course fabulous to have the support system of a care partner or a loved one, but maybe if you don't have a care partner or have a spouse or any children, then it can be beneficial to reach out to other family and other friends too. Finding a wide breadth of a network in order to have that support that you need as well. Then establishing an interdisciplinary care team. Again, that's that rehab team, it's also nursing and social work and the movement disorder specialist. We'll talk about why that can be a benefit as well.
Something I want you to keep in mind is that Parkinson's disease, of course, it's a diagnosis. It is something that, if you have Parkinson's, you have been diagnosed with, but keep in mind that it does not define you and who you are. We're trying to optimize quality of life and help you keep living your best life possible.
Jenna Iseringhausen 00:15:34
Exercise.
According to a 2011 study, it has been found that exercise may be neuroprotective in Parkinson's. It is something that's being studied quite frequently, actually, about the benefits of exercise with Parkinson's disease. It has been found that PD risk in humans is significantly reduced by midlife exercise as well. This particular study recommends vigorous exercise for people with Parkinson's disease, so something that would get the heart rate up, get you sweating a little bit. Of course, if you have any cardiac issues, that's something to do with the guidance of a cardiologist as well.
But vigorous exercise has been found to possibly be neuroprotective in Parkinson's. Some of those exercises could include stationary bicycling or swimming. It could be tai chi. Anything that you enjoy is really, really the key there.
It also has non-motor benefits. In addition to helping with building the strength in the legs and building core strength, helping with balance and mobility as well and maintaining some of those good habits with walking, it also has non-motor benefits. If someone has issues with sleep or memory, mood, so any of that depression or anxiety, apathy in particular, exercise can really help with, and relief of constipation. So getting that truncal rotation with exercise can help relieve constipation.
Physical therapy and occupational therapy are vital players here too to help with exercise. If you meet with them, they can provide you with a baseline assessment and look at specific needs and also create an exercise plan for you. The thing that's really great about that too is, if you maybe didn't exercise growing up, it wasn't a part of your routine or your day-to-day, this is a really good place to start, by reaching out to a physical therapist because they can help provide you some better guidance, especially with doing some safe exercises for you as well.
Nutrition.
This is a very big question. We get this a lot, actually, is what is that ideal diet for Parkinson's disease? There's a lot of controversial information actually about what the ideal diet would be for PD. But there is some research to show that a Mediterranean diet may help improve decline of mobility. That's typically a good diet to stand by. That would include olive oil, olives, green leafy vegetables, fish. Those are all foods that are heavy in omega-3s, are very good as well.
Also increasing water intake. This is very important, especially when it comes to managing constipation. Dehydration can lead to lightheadedness and dizziness, fatigue, all of these symptoms that can really impair quality of life. By increasing water intake and providing some better hydration for yourself as well can assist with some of those non-motor symptoms. As well as calcium- and vitamin D-rich foods, these are very important too when it comes to prevention of osteoporosis. We want to be sure that if you're not getting enough of those in your diet, to work with your primary care doctor to see if any supplementation would be necessary.
Of course, that's when that full team comes into play and bringing your primary care doctor into the team as well.
Jenna Iseringhausen 00:19:18
There's a big question that we get a lot too for organic food or not. The Environmental Working Group of the U.S. Department of Agriculture and Food and Drug Administration, they came up with this great list here. On the left, you see the Dirty Dozen, which are the fruits and vegetables that are grown more with pesticides, and so more recommended to buy these organic because of the higher pesticide content. On the right, you have those fruits and vegetables that are actually lowest in pesticides. The Clean Fifteen is what they call them. These are more of the fruits and veggies that they found would be safer to buy not organic if you didn't need to. This is a helpful list to go by as well.
Dental hygiene, which oftentimes is not thought of actually, but people with Parkinson's disease can be subject to increased dental caries, tooth loss and periodontal disease. This is for a number of reasons. Dehydration is one reason. Also, if someone is breathing more out of their mouth and they have dryness to the mouth, that can lead to increased risk as well of dental caries and periodontal disease. Saliva is actually a protective factor to prevent against this.
What we typically recommend is brushing teeth twice a day, flossing, frequent rinsing, hydrating more, so drinking more of that water is really key. One of the challenges sometimes of this is if you have trouble with dexterity of your hands or using a toothbrush maybe with a little bit of tremor and really getting into the backs of the teeth, that can be more challenging. Occupational therapy is actually really helpful with this. They can help provide some different techniques and different types of toothbrushes to make sure that you're getting full coverage within the mouth.
Also, a soft toothbrush can be helpful, help protect the gums. An electric toothbrush, a lot of people get a benefit from that as well. You don't have to move it yourself quite as much. You just rotate it around the different teeth. Making sure that you're really brushing on the front, sides and backs of the teeth as well, and that you have a good dentist as a part of your team. It's recommended that you go every six months for regular dental cleanings. If someone has dry mouth, it has been found that Biotene has really good products for dry mouth to help with that as well.
Constipation.
This is a non-motor symptom, so a non-physical symptom, that can really impair quality of life. It can give discomfort to the abdomen. It can prevent people from wanting to socialize or go out as often. The definition of constipation is fewer than three bowel movements per week or having to strain to pass stool. Different ways that you can assist with that as well would be, like we discussed, increasing fluids.
Fiber-rich foods, which would be those green leafy vegetables; fruit like apples, oranges are very good; and more bran-like cereals, which can be assistive as well. Pear or prune juice, yogurt, which has those healthy bacteria in it, water-rich foods. If you're not one to drink as much water and you're really doing your best, it can be helpful to incorporate some of these foods that also have higher water content, which could include tomato, radish, celery, broccoli, cucumber. That's just a short list of some of those heavier water foods. Exercise is crucial.
Also, physical therapy. They can be really helpful with this too. They can actually work with you on bowel and bladder training to help with constipation.
Jenna Iseringhausen 00:23:20
Also establishing that team. Establishing the team is very crucial in order to make sure that you've got the support and the resources that you need early on. Speech and language pathologists, they can be a huge help, especially for newer diagnosed individuals that have maybe a little bit of softness to their voice or difficulty maybe with, maybe they're having a little bit of slowness to thoughts at times and not able to get what they want to say out as quickly or following conversation as quickly. Speech and language pathology is really helpful for that.
They work with voice, they work with speech, they work with swallowing, and they can provide individualized plans and exercises for people depending on what your specific needs are. If you're having a little bit more trouble with really projecting and getting your voice out there, it's interfering maybe with you communicating with a spouse or in the workplace, then speech and language pathology is very helpful as well.
Physical therapy. They are movement experts as well, and they can, we discussed this a little bit earlier, but they do a lot of hands-on care and education and help you come up with these long-term plans, long-term goals of fitness and exercise as well. They can reduce pain, they can restore function and prevent disability. A lot of the times I'll hear, especially with newly diagnosed patients, that maybe they don't feel like they need physical therapy, it's not quite time, but this can be helpful just to get a good baseline assessment with them. They can give you some of those exercises to do at home.
Maybe you're having a day where you don't feel like riding the stationary bicycle. It can be really helpful to have this person on your care team to be able to help you get some of those other exercises to keep yourself strong.
Overall, doing these exercises prevents injury and promotes long-term safety too.
Occupational therapy. They're very helpful as well. They look at a holistic perspective and focus on adapting the environment or the task to fit the specific person. Maybe you're having a little bit of trouble with handwriting or typing or using a computer mouse. All of these things occupational therapy can help with. We talked about the toothbrush. They help provide these adaptive techniques and exercises to help you maintain these certain tasks that are important to maintain on a day-to-day, and then also those everyday tasks that you enjoy.
Maybe you like painting or sculpting or doing things that's more hands-on. Maybe you're a carpenter. All of these things, they can even have you bring in the different things that you use, and they can observe you doing those activities and can help you adapt to make sure that you're able to continue doing those things you really enjoy.
Social work and mental health, very important to bring into the team early on as well. They help particularly with coping and any of these life changes that an individual, including care partner, are going through. They can connect to supportive groups, so that's not just a support group that people might initially think of, but things that are supportive overall. We're talking about maybe exercise classes as a supportive group or joining a club, things that you enjoy. How can we connect you to more of those resources in the community?
Coping and adapting with the diagnosis and mental health promotion. They can do therapy sessions one-on-one, and they can also connect with resources in the community too, with therapy or psychiatry if needed. Then if you feel like you need some different things in the home, they can help connect with getting set up with some of those adapted resources in the home. Those support systems again include not just support groups, but thinking of book clubs, musical groups, educational classes, anything that you really enjoy from there.
Social work is very helpful to have on the team too.
Jenna Iseringhausen 00:27:48
Nursing. Nurses are adaptable, really, to whatever role they would need where they're working. Something that's really focused on with nursing is education of the patient and care partner and family, as well as promotion of a safe environment. Focusing on research, so evidence-based practice, and helping with health policy and also system management. These are all very key roles of nursing.
Oftentimes what nurses do, they help coordinate care and collaborate here, especially in a movement disorders world. Coordinate care, they're there for medical questions. If you have questions about medication management, possible side effects, things that maybe you're concerned about, any of these things can be discussed with the nurse on the team. And then mental health promotion. Nursing and social work, they work together very closely when it comes to this as well.
What can the interdisciplinary team do for the care partner? The social worker, they're available for coping and support. They're there for community resources, not just for the person with Parkinson's, but also for the individual that's there supporting that person with Parkinson's, and mental health. The nurse, again, is there to try to ease some of that stress and anxiety that might be caused with coordinating all of these different appointments throughout the week.
Education, again, support system and any medical questions. Physical therapy can also teach safe maneuvering. If maybe you're having a little bit of trouble standing from a chair and you just need a little bit of help standing from the chair, they can help teach the care partner how to safely be there to help without injuring themselves.
Occupational therapy can help with adaptations of the home if needed and safe activities of everyday living. Speech and language pathology can also then help with those improved communication techniques with their partner, so helping with voice quality, which then can help with that communication.
Again, it's very important to find that support network. More supportive systems you have, the better. Finding those friends, finding those family members, whoever you feel comfortable with to communicate about these different needs that you have throughout the span of time with the disease process. Making sure that you're caring for yourself as well as a care partner. It can be very easy to go to the doctor's office visits with your significant other or your father or mother or maybe child and to kind of put your care on the back burner.
But it's very important to make sure that you're also going to regular doctor's visits, you're exercising and providing yourself with a good healthy balanced diet as well. If you're not taking care of yourself, then it's going to be harder to be a team member as well with your care partner.
Jenna Iseringhausen 00:31:03
Come prepared to office visits with your partner, so this can help ease a lot of anxiety that maybe you might be having going into office visits. We all know that usually with a physician, there's an amount of time that you have, and it's best to be prepared going into that. That way you feel like you have all of your questions answered and can leave there feeling satisfied. Again, prepare questions for the provider. That can be very helpful. It does ease anxiety of the care partner during the visit, ensures those questions are answered, and then to remember those five steps.
The five steps that we discussed at the beginning here, those are important for the person with Parkinson's, but also for the care partner too, for yourself. Those five steps are setting your goals as well on what you would like to prioritize, finding a support system for yourself, and again, social work and nursing, those are huge assets to help you do that. Creating those healthy habits, so exercise, diet and mood management, being active mentally, socially and physically, and then having that expert in PD that can answer any of the questions you might have throughout that process.
Keep in mind that Parkinson's disease, yes, it's a diagnosis, but it does not define who you are. Keep living your best life. Really, the big takeaway here is by establishing these healthy habits early and creating a support system and interdisciplinary team around you, we can help you maintain those things that you enjoy on a day-to-day and help you continue living your best life.
These are some of the references that I utilized for this presentation as well, if you'd like to look at any of these.
Thank you all. Appreciate it.
Dr. James Beck 00:33:08
Thank you, Jenna. That was a fantastic presentation, chock-full of detail. Just a reminder for everyone again that if you go into the chat window, you can see where the slides can be downloaded. You can see where those references are that Jenna referred to. You can go back and keep track of what those five steps are and the other details about creating your own integrative care team. Speaking of which, Jenna, you can come back on video if you can. We've got an opportunity to have this Q&A.
Lots of questions are coming in from people who are listening to this webinar right now. We've been growing in numbers, and we really appreciate that. First, I just want to remind people that we have a lot of resources available at the Foundation. Many of the topics that Jenna covered are available. We have a dedicated section on our website for the newly diagnosed, and in the chat there's a link to it right now. You can go and take a look and see many of these resources that Jenna talked about. We also have ongoing virtual events for people in the community, so take a look at that. Let's start with some questions first.
You touched on this, I think, a little bit, but I think it's worth reiterating. The idea of an integrated care team, I think, is really important, and that's what we believe at the Foundation. I think you've laid it out quite nicely.
What about people in rural areas? What about people who are not necessarily in the large cities, or whose center doesn't have this there? How do they create this care team? What would you recommend for some people who may be a little farther afield than our Centers of Excellence?
Jenna Iseringhausen 00:34:56
Absolutely, yeah. I think that the Parkinson's Foundation is a huge asset for that. Oftentimes, even if I'm trying to find a resource in a more rural area for a patient or individual, I'll actually call the PF Helpline to ask if they know of any resources in that area. That's a great way to look there as well. Also, a website that I use a lot is the LSVT website, where you're able to search by your area code to find different physical therapy, occupational therapy or speech therapists who work in different areas as well.
I do know that a number of centers are going out and doing training in more of the rural areas. Maybe they're not a Center of Excellence themselves in a rural area, but they've actually gone out and educated other therapists, other nurses and other physicians on Parkinson's disease and how to do the appropriate exercises. I think that, thankfully, it's getting better, those rural resources, and the Parkinson's Foundation oftentimes knows about some of those different resources in that area.
If not, then they do quite a bit of searching too, to try to help.
Dr. James Beck 00:36:19
Yeah, those are really good points. I also wanted to add that, in this time of COVID, we've also moved to have a lot of online resources. During a week, we have a number of opportunities, including an exercise one on Fridays, to give people an idea of what to do.
Questions come in about exercise since we're on that topic. Are there any recommended ones that you can think of, or is it just best to be active? Is that more important than any specific type of exercise? What are your thoughts on that?
Jenna Iseringhausen 00:36:56
Well, it really depends on the area you are in and what's available. I do think the overarching theme would be to find something that you enjoy that you would stick with.
That's the key, because if you're doing an exercise that you enjoy, you'll also get an additional pleasure out of it besides the physical improvement that you might get from exercise. Again, really trying to find that particular exercise that you like, whether that's maybe swimming or maybe it's dance, maybe it's tai chi, anything that could give you specific pleasure, I think, is the main goal with exercise and Parkinson's.
Dr. James Beck 00:37:39
Yeah, I agree. I think it's more important for people to be able to do something they like to do so that they will keep on doing it. There's nothing worse than getting on a treadmill if you don't like to or you can't read while you're on a treadmill. Most people may want to be outside or, as you point out, engage in social activities like dance, which people can really work up a sweat doing. I think that's the key thing.
Also, thinking about exercise, you mentioned that interesting thing that it could be both a potential preventative as well as a moderator of symptoms. As someone was just asking about that, it certainly makes sense, understanding what you were saying about that.
Jenna Iseringhausen 00:38:18
Yeah. There's a lot unknown still with exercise. That's the one thing to keep in mind, that it's still being researched quite a bit, but it may be neuroprotective against Parkinson's disease. We don't know for certain, 100%, that if you're exercising that you won't get Parkinson's disease. But there are so many different aspects to exercise that can really help with the symptoms of Parkinson's disease.
In addition to that possibility that it could slow the progression, it also can help again with the mood and really help with the here and now and the day-to-day. That's another reason why it's really important to maintain that regular exercise. But yes, there is that possibility that it's neuroprotective, but we don't know for sure, 100%, that it is, if that answers.
Dr. James Beck 00:39:15
That's right. Yeah, and I think there are, as you pointed out, some trials underway to really see if we can better ascertain that. But I hear your point, which is that exercise is a rising tide that raises all boats. People will feel better and be able to do things more, and what we're really targeting here is improvement in quality of life. I think perhaps more than anything.
There's a question from Barbara, who indicates that her quality of life hasn't been affected so much by Parkinson's until she stopped taking drugs for her PD. She's asking, will the drugs, the medications, affect her progression? I think the answer is that it wouldn't, but it'd be good to hear from you.
Jenna Iseringhausen 00:39:58
Yeah, sure. That's a question we do get quite a bit, especially for people who are thinking about whether or not they want to start medication. Some people have heard that rasagiline is a medication that was being studied for a while on whether or not it would slow the progression of Parkinson's, but those studies came back essentially inconclusive.
There are, at this time, no medications that do slow the progression of Parkinson's disease. The medications are meant for management of the symptoms that are experienced on the day-to-day. When I'm talking about the symptoms, it's those movement symptoms. The tremor, the slowness, the stiffness, those are all the things that are assisted with the medication, but not to slow the progression.
Dr. James Beck 00:40:51
You encounter, as we'd expect with a lot of people on our webinar today, that in the past there has been some reticence about starting medications in general. But perhaps, can you just speak to how that has changed? My understanding is people with Parkinson's are encouraged to take the medication as soon as they need it. What have you heard about that?
Jenna Iseringhausen 00:41:21
That's a question that comes up a lot too, is that people are concerned that if they start levodopa now, in five years they're not going to be able to take it anymore. That's a common concern that people have. But it's actually not about how long you've been on the medication. It's actually about how long you've had Parkinson's disease and the state of the progression of the Parkinson's.
People become concerned about maybe developing side effects after they've been on the levodopa for a certain length of time, but it's actually, again, more about where you are within your Parkinson's disease in particular. That depends person to person. We can't say in 10 years all Parkinson's people will have side effects from medication. We really don't know that because the rate that it progresses is different person to person.
It's really just, essentially, again, by optimizing our quality of life, sometimes in order to do the things that people want to continue doing and that they enjoy doing, it might require a little bit of medication. That's okay.
It's okay to begin that as a treatment, because it's again not dependent on the length of time you've been on the medication, but the length of time that you have the disease.
Dr. James Beck 00:42:44
That's right. I believe I've read that people have a better quality of life the sooner they start, and it's the delaying the medication that can ultimately lead to a decline in quality of life sooner.
Linda is one of our viewers, and she's asking about how she can tell whether a symptom is from Parkinson's disease or a coexisting morbidity. How do you differentiate what is PD and what's not PD?
Jenna Iseringhausen 00:43:15
Yeah. Well, it would depend on what, in particular, you're experiencing, and I can't speak to that in particular. But I think it's really important to have a movement specialist as a part of your team, where they could really sit down with you and talk about what are these different symptoms you're experiencing and then be able to dig a little bit deeper into that. It's always important to look at all of the possibilities that something might not just be from Parkinson's disease in general.
I think it can be easy. We actually hear that a lot, where someone will come back and say, oh well, this doctor said it was from my Parkinson's disease, but really we can only say that if it's something where we've gone through the different avenues and ensured that it's not from, say we're talking about fatigue, that it's not from abnormal CBC. Checking blood levels, making sure vitamins are normal, that we're looking at blood pressure, that we're covering every avenue first before just saying, oh, this is from Parkinson's disease. That's where I think it's important to then have that full team be in communication with each other.
The movement specialist is then available to talk with the primary care doctor to be sure that everybody is coordinating that care too.
Dr. James Beck 00:44:38
Yeah, I think the idea of having experts on your team is critical. I know that a former colleague of yours, Dr. Melissa Nirenberg, had created a fact sheet for us. We have a resources slide up on myths and misperceptions about PD and trying to help answer those types of questions.
Jenna Iseringhausen 00:44:58
Absolutely.
Dr. James Beck 00:44:59
Another viewer writes in about her husband who is now experiencing head tremors along with hand tremors, and he's a bit embarrassed to go out in public with these head tremors. What does one do for the different tremors that people have? Are there treatment alternatives besides oral medication? What do people do to help with that?
Jenna Iseringhausen 00:45:24
Yeah, that's a good question. It depends on what kind of tremor it is to start. There are different types of tremor. There's a tremor that happens more when someone's resting, like we talked about at the beginning, but there's also a tremor that can happen when you're using your hands. When maybe you're holding a cup or reaching for something, when you're using utensils, things like that. That can be more of the action tremor that we're looking at. Therapy would differ depending on what type of tremor it was.
Some of the non-medication things that can help with tremor. Sometimes it can be particular positions that maybe the tremor is noticed with. Even just adjusting position a little bit can help. We have some people who will maybe put a hand in their pocket if they feel like they're having more tremor there in a particular hand, and that can assist.
I do think that it can affect people socially. Pulling in the occupational therapist can assist with that too if it comes to not wanting to maybe go to restaurants anymore because of notice of that tremor, not being able to cut their food as well because of the tremor. Occupational therapy can provide these additional exercises to do to try to help with that and try to cope and adapt to the tremor as well.
That can be helpful. But again, I think the main thing would be figuring out what type of tremor it is first and then working with your provider on the specific treatments that would gear towards that.
Dr. James Beck 00:47:04
Absolutely. Kind of related to the tremor, I've got one person who writes in who's recently diagnosed and talking about how they wake up with cramps in their toes in the morning. Have you heard about that?
Jenna Iseringhausen 00:47:16
Yeah, definitely. Definitely looking at the time of day that that's happening. Sometimes levodopa can help with that. That's something to discuss with your provider, timing of levodopa. It can help relax those muscles. It sounds a little bit more like something we call dystonia, that toe curling or cramping at night. It can happen during the daytime as well.
That's something to look at, the timing of it, and different exercises and stretches for it as well that can help. Also, if it's something that's really interfering, maybe interfering with you being able to put shoes on or to walk, there are different therapy treatments like botulinum toxin injections, which can be provided for dystonia or toe curling. But again, it would really depend on what your specific symptoms are and then working with your doctor on that. It's hard to know unless you see someone in person in the office.
Dr. James Beck 00:48:21
Yeah, understood. Goal setting is an important aspect of what we're talking about with people with Parkinson's, the newly diagnosed, and understanding what they want to achieve and working with their provider to move forward. Can you provide some examples of goals that people may be thinking about, just to help them get a sense for what these goals might be as part of goal setting?
Jenna Iseringhausen 00:48:46
Yeah. I think a lot of goals, depending on what phase of life an individual's in, if they're still working, then oftentimes we'll hear that goals are that they want to continue being able to write throughout meetings, to continue to be able to project in order to give presentations, those types of goals.
Oftentimes we'll hear maybe around work, it's oriented around work.
Also things that you enjoy. What are those hobbies that you really like doing on a day-to-day that you want to be able to continue doing to maintain? Is it painting? Is it bicycle riding? Is it the carpentry work that I gave an example for earlier? Is it building little ships? We have some people who like building those very small ships that take a lot of that fine motor movement, a lot of dexterity. Looking at hobbies as well and orienting goals around that can be very helpful. Maybe it's just about improving mood. Maybe you're saying that you want to feel more motivated on a day-to-day or feel down less time throughout the daytime. Sometimes we'll hear that mood interferes with people wanting to socialize and do the things they enjoy. That would be a good main goal to have: how can we improve mood to help you then be motivated to exercise and just socialize and keep yourself active? It really just depends on what a person's priorities are.
Looking at maybe some of those main obstacles that they've come across on a day-to-day and approaching it that way, and then utilizing the team to overcome those obstacles.
Dr. James Beck 00:50:39
Absolutely. That's a very good point. Thank you.
I have a question that's come in about, for our audience both here in the U.S. and internationally, materials in Spanish. We certainly do have materials in Spanish, and I know my colleagues will put a link in the chat for the Spanish section of our website that's working very hard to ensure that everybody has the information that they need to live a better life with Parkinson's.
As part of that, two questions come in that are related. One is a woman is asking about her husband who refuses to go to the doctor, doesn't want to get off the couch, really apathetic. Another one, in a slightly different vein, it's a father who used to be the patriarch of the family, and now clearly is struggling with the diagnosis because it's giving them a change in status. How do you bring these people out? One is apathetic, the other is sort of in denial, but I think they're maybe related. What's your approach to telling care partners and family members how to reach these individuals and be able to move forward?
Jenna Iseringhausen 00:51:45
Yeah. Well, I think the key to that is bringing not just the patient in the loop with that, but also involving the care partner, like you were saying. Oftentimes we'll hear that more from the care partner, that they're noticing that maybe their loved one that has Parkinson's is feeling more withdrawn or is more apathetic, and so making sure that they're both involved in that. But then also pulling in social work and nursing. I think those are really vital members to be able to go to to talk about some different coping techniques. A lot of the time, it just needs to be discussed and to think about how can we overcome this apathy.
How can we overcome the depression and help you cope? A lot of the time, by providing that extra support and connecting to more resources and even educating, like providing these educational sessions on Parkinson's, but being able to dig a little bit deeper and see what the underlying cause of that is.
What is it that's really making someone feel down or that's interfering with them being able to cope with the diagnosis would be the most helpful. Maybe it's this, like you were saying, transition of being the breadwinner of the family and then no longer being the breadwinner of the family, and that change in dynamic. Or maybe it's not being able to go to work as often anymore. Often we find that people have worked their whole lives and they become almost defined by the work that they're doing. If they're no longer working, you can see this generally even with retirement.
If they're no longer working, there can be that transition period where people are trying to discover maybe what they enjoyed again or who they are and how they define themselves. That's where social work and nursing can really play a good role, because they can help you work through those different dynamics and different things that might be causing that apathy or difficulty coping.
Dr. James Beck 00:53:58
Absolutely. I think it's important to recognize for our audience that a PD diagnosis is not a death sentence. Not to kid you, it's not going to be always an easy road ahead, but there's so much one can get out of their lives living with Parkinson's disease. I know my colleagues and I see that every day with the people with PD we interact with.
I've got a health professional question for you, Jenna. This is from a licensed home care agency. They've got a number of people with Parkinson's, and they need to be proactive as part of a regular reassessment. Is there a checklist for medical and nursing that their care managers can use when looking at Parkinson's disease? Is there something available like that? Do you know?
Jenna Iseringhausen 00:54:44
That's a great question. I guess my question back would be, are they thinking of like medications to avoid type of checklist, medications that are okay to prescribe?
These are things that I think could be really helpful for patients who are in care facilities. There are lists like this, actually, through the Parkinson's Foundation, especially in the Aware in Care Kit. Having a list of the medications to avoid that can worsen Parkinson's symptoms, and there's a good list of those. The medications that could be safer alternatives to prescribe if they need to, that would not cause the symptoms of parkinsonism to get worse. And then also the medication regimen.
Having a checklist of making sure that they've got the appropriate medication regimen for Parkinson's people. I think it's very easy to get a form that says take Rytary TID, but that TID could look very different for one Parkinson's patient compared to another. The timing is very dependent on the person. If there's a standard checklist, I'm not sure. Do you know, Jim, if there's a standard checklist?
Dr. James Beck 00:56:12
I don't.
Jenna Iseringhausen 00:56:14
Okay.
Dr. James Beck 00:56:15
But it sounds like an interesting idea. I think we'll have to take note of that and see what we can do internally to be able to provide to the community. Recognizing, I think, as we have so many health professionals on this, that not everyone's an expert in Parkinson's disease. They have broad responsibilities, and we view it as a role of the Foundation to ensure that everybody can get good care and provide education where we can. I think it's something to do.
Jenna Iseringhausen 00:56:45
Can I add one thing, though? Oh, sorry, go ahead. I'm sorry.
I think too, keeping in mind that if you're maybe a rehab specialist and you're working with someone who has Parkinson's, they might look really great during one session if it's done at a particular time and their medications are on and they're working. But then maybe an hour and a half later or so, they might look very different. Keeping that in mind that it does fluctuate, and so helping to provide adaptive techniques for when they're on the medication and off the medication can be very helpful to keep in mind and to help with safety too for those individuals, just since we're on that topic.
Sorry, just one thing.
Dr. James Beck 00:57:28
Yeah, absolutely. Thank you very much for adding that.
I just wanted to let our audience know that we've got our new slate of Expert Briefings coming up for next year. In the fall, we'll have a dedicated three-part series for young-onset Parkinson's disease. Then in the winter, moving into spring, we'll have another three-part series focused on symptom management. Is it PD medication or aging? Really trying to understand a bit more detail about Parkinson's disease and answering some of the questions that are coming through here. I know many of them we haven't had a chance to get to, but we're coming up at the top of our hour.
I just wanted to ask one more question that's come through, and that's finding that support. We talked about how to find allied health professionals, the occupational therapists, the physical therapists. How do you find a movement disorder neurologist? How do you go about that process? I think that's a key aspect to this team approach that we're talking about.
Jenna Iseringhausen 00:58:33
Yeah, there are some really very good resources out there. I would say, again, the Parkinson's Foundation. They keep a list of movement disorder specialists. Also the International Parkinson and Movement Disorder Society, they keep a running list too of the different movement disorder specialists. You can actually search by the area where you live, and it'll pop up as well with different specialists there. I believe the Michael J. Fox Foundation also has a list too. You can even reference all three and compare.
It's always good, I think, before scheduling a visit with one of those to call the office ahead of time and make sure that provider is still there at that office, because sometimes locations can change. I would recommend that. But those three different resources are usually pretty reliable.
Dr. James Beck 00:59:25
Yes, perfect. Thank you.
I also know that there are a limited number of movement disorder neurologists, so they often have a very full appointment calendar. Not because they don't want to see new patients. It's just that when they're discovered and patients like them, they have a tendency to flock to them. You just have to be patient and get into the regular rotation there.
Jenna Iseringhausen, faculty nurse at NYU Langone, thank you very much for your time today. It's been a great, very informational webinar, and I look forward to seeing you again. To everyone else listening to the webinar, thank you very much for attending. This is our last series for this year, but look forward to seeing you again come September. Thanks very much, everyone. Have a good day.
Jenna Iseringhausen 01:00:18
Thank you all. Take care.
