Dr. James Beck 0:01
Hello everyone, and welcome to our Expert Briefings. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation. Our Expert Briefing today is focused on understanding pain in Parkinson's. Pain is an all-too-common non-movement symptom of Parkinson's disease that is often under-recognized. Today, we'll learn about the types of pain in Parkinson's, its impact on those living with PD, and the many ways to manage pain in Parkinson's disease. Before we begin, I just want to remind everyone that we're recording this session. For your convenience, the recording of today's Expert Briefing will be made available online, and we'll also be emailing a link to the recording and other resources related to today's topic for everyone who's already signed up, so you can just wait for that link and be able to watch it later on.
But before we begin, I just want to tell you a little bit about the Parkinson's Foundation. The Parkinson's Foundation is a nonprofit focused on bettering the lives of those living with Parkinson's through improving care and advancing research. Importantly, everything we do is done in close concert with our community to ensure that our actions are aligned with the needs and priorities of those living with PD. Today's program is just one example of how we are meeting those goals. I'd also like to thank our sponsor. Today's PD Health at Home and the Expert Briefing Series are presented by the Light of Day Foundation, whose generosity has really made this programming possible. So thank you to all of them.
As we get ready to start our presentation, we want to know a little bit about you. Tell us about yourself. For those who are joining from Facebook Live, please respond using the comments section. Tell us whether you're a person with Parkinson's, a caregiver, care partner, healthcare professional, or someone else who's just joining and we don't have listed here. Just let us know as part of that. Once we do that, we'll give it a few more seconds to let it come in.
All right. Excellent. Not surprisingly, most people joining are people with Parkinson's and their care partners. We welcome all of you today for joining us and sharing your connection with Parkinson's disease. Next, I would like to introduce our expert presenter. Dr. Apurva Zawar is a passionate neurologic physical therapist and founder of Beyond Rehab. She specializes in movement disorders and Parkinson's disease, dystonia, functional neurologic disorders, and chronic pain. She provides personalized, evidence-based telehealth services in California, Washington, New Jersey, Massachusetts, and Hawaii. As a volunteer assistant clinical professor at UCSF, Dr. Zawar is dedicated to teaching neurorehab and fostering community engagement. Beyond her clinical and educational roles, she actively contributes to research and advocates for the Parkinson's community as a board member of the APDA Northwest. Dr. Zawar, welcome, and thank you for sharing your time and knowledge with us today.
Dr. Apurva Zawar 2:48
Thank you for the introduction, and I'm excited to be here. I'll just start sharing my screen.
Welcome, everyone. Today, I'll be talking about understanding pain in Parkinson's.
We'll be looking into understanding the pain presentation, causes of pain in Parkinson's disease, how it changes over time, acknowledging the impact of pain on mental health and quality of life, and looking into the different pharmacologic and non-pharmacologic treatment options.
Parkinson's disease involves a wide range of presentations, both motor and non-motor. Motor symptoms, including tremor, rigidity, postural changes and slowness of movement, are the most common ones and are commonly talked about. However, there is a wide range of non-motor symptoms, including sensory changes, pain, fatigue, balance, mood changes and others, among which pain is one of the most common non-motor symptoms.
Looking at both the motor and the non-motor presentation, it's really important to have whole-person-centric and multimodal care to manage it.
Looking into the prevalence of Parkinson's as compared to the general population, individuals with Parkinson's have reported a higher level and prevalence of pain.
In Parkinson's, chronic pain is present throughout the disease course in almost up to 80%. Out of that, around 20% of individuals experience pain during the time of diagnosis, and it may be associated with early motor change. Pain significantly impacts the overall quality of life and day-to-day functioning, so it's really important for us to understand and find different tools and approaches to manage it well.
As we are learning and understanding, pain is very common. Almost around 80% of individuals experience it. It's also, at times, not well treated and underdiagnosed. This is a really good opportunity to understand and review what the new ways and new treatment options are, and how you can manage the pain.
I'd like to quickly highlight how the pain presentation changes across the disease course. Initially, pain can at times be present prior to the onset of the motor features. It's typically present as shoulder pain, or shoulder-arm discomfort syndrome is a very typical presentation. Almost 5% of individuals report pain as their first symptom.
In early Parkinson's disease, pain is also one of the most prevalent non-motor symptoms, and it typically affects the side of the body that was initially affected by motor symptoms. Almost around 20% of individuals experience it during the time of diagnosis.
Dr. Apurva Zawar 6:26
With the advancement of Parkinson's disease, pain is more common, and it's reported that there is a 35% higher incidence of pain as compared to the early stage of Parkinson's.
As you're understanding the journey and different presentations across the disease course, we also want to look at the primary causes of pain. Pain in Parkinson's is very complex and often multifactorial, and it can occur anytime during the disease course. The primary causes include mainly dysfunction of the dopamine circuit and dysfunction of the pain pathways.
A higher incidence of musculoskeletal changes in Parkinson's is also one of the common factors contributing to pain, and changes around the inflammatory signals together contribute to the pain experience and increased pain prevalence.
As we are discovering pain, we also want to look into whether pain is felt differently in Parkinson's. The answer is yes, the pain is felt differently. It's mainly because of the lower threshold for pain perception as compared to the healthy group, resulting in increased pain sensitivity and altered pain sensation due to changes in the sensory motor integration and pathways.
Looking at how pain impacts overall quality of life, with the increase in pain, there is some impact on physical engagement. There are gradual changes or decline in physical engagement, and a decrease in activity and exercise tolerance, which is very, very important for Parkinson's management, resulting in increased Parkinson's symptoms and thus impacting overall quality of life. It's a vicious cycle, and it's all very closely connected.
It impacts in so many different ways. Chronic pain amplifies stress, anxiety and depression, affecting overall mental well-being.
It impacts participation in daily activities and social interaction. It limits your exercise engagement, which is very crucial for managing Parkinson's symptoms. In general, because of the changes and decline in exercise, it in turn affects overall quality of life. Hence, it's really, really important to understand how you can take control and how you can better manage.
We need to look into how you break the vicious cycle and control pain. Recognizing the pain pattern is the first step. Looking into differentiating the pain from non-Parkinson's-specific pain, effectively tracking and communicating with providers, and integratively managing it by combining self-management and multimodal care options. We'll be looking into each of it one by one.
Dr. Apurva Zawar 9:21
The first big step is understanding pain. What is pain? Pain is most commonly referred to or considered an injury. However, pain is an experience. Pain is an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.
It's a very personalized experience, so it's really important to understand what factors are contributing to it and to look into different components, right from recognizing, categorizing, finding ways you can effectively track, communicate and manage it.
First and foremost, you want to look into acute versus chronic pain. Acute pain is very short-lasting pain, which typically has a direct relation with injury. It changes with time, and it's very easily managed. Within a short timeframe, you see the body is managing it well. However, chronic pain is the long-lasting one. Pain that lasts for more than three months is referred to as chronic pain.
Looking into understanding whether your pain is Parkinson's-related pain or Parkinson's-unrelated pain is very important because that will help you seek the right resources from your doctors and look into what your options are. Is optimizing the medication or changing medication dosage helpful in managing pain, or do you want to look into other different options?
We are going to go with this exercise where you're going to look into screening your pain presentation to see if it belongs to the Parkinson's-related pain or Parkinson's-unrelated pain. I'd like you to answer all of these questions. I'll go one by one. Just put yes or no for these questions.
The first one: has your pain started or become more severe since the onset of Parkinson's symptoms? You can put down yes or no. Second, is your pain changing with rigidity, tremors or slowness of movement? Do you see your pain more intense during the off phase of medication? Third, is your pain associated with excessive or abnormal movements? Lastly, does your pain improve when taking Parkinson's medication?
As you're reflecting and answering these questions, if you answered yes to any of the questions in the previous slide, then the pain is considered Parkinson's-related pain.
Now, we need to further look into categorizing the pain into different subgroups because pain presentation changes, and it differs from time to time and from person to person. Looking into the characteristics of the pain presentation is really important.
Dr. Apurva Zawar 13:23
If you experience pain mostly because of the changes in the posture following prolonged sitting, or having some discomfort around the joints, decreased mobility, joint pain, muscle tenderness, cramps or aches, then it's more referred to as musculoskeletal pain. Anything which is more mechanical and changes with the postural change, where you know it has an impact on joint pain, is more referred to as musculoskeletal.
Dystonic pain is pain related to the abnormal involuntary movement. Occasionally painful muscle cramps in specific regions during the off period contribute to more of the dystonic pain.
Radicular pain is best described as burning, tingling, numbness, shooting, pins-and-needles type of sensation along the course of the nerve. Typically, around the back of your thigh or your arms is where you experience the radicular type of pain. Central pain is very generalized, very diffuse. At times, it's hard to explain, and it's constant and very dull aching in nature. These are very broad descriptions of differentiating and understanding the different types of pain and how they manifest.
Next, you want to rate your pain level, looking into different components. As of today, you want to rate your intensity based on the last one week. How was your overall pain intensity? Zero meaning no pain, 10 meaning extreme pain. Where would you rate your pain intensity?
Followed by pain frequency: how frequently do you experience pain? Is it rare, occasional or very constant? On a scale of one to three, you can put three meaning constant pain and one meaning rare.
Followed by the quality of pain: how is it impacting your quality of daily living? One, no impact or minimal impact; two, moderate; three, severe. You just want to put all three numbers. Based on the assessment tool, the best way to rate it is you multiply the intensity number with the frequency and quality. It's just to give you objective data and find a way you can best rate your pain level as of today.
Now, just quickly looking at the available information and statistics around the incidence and prevalence of chronic pain: nociceptive pain, which combines musculoskeletal and dystonic pain, is one of the most commonly experienced pains, both in the early stages and the advanced stages.
Looking into how many types of pain individuals experience in the early and advanced stages, typically around one to two types of pain have been reported during the early and advanced stages. Also, around 25% of individuals reported no pain both during early and advanced stages.
Since musculoskeletal pain is one of the most common pain presentations, looking into the areas being affected, the majority of patients reported lower limb and low back pain as one of the common areas of discomfort.
Dr. Apurva Zawar 17:30
Now, as you're differentiating your Parkinson's pain from non-Parkinson's pain, we also want to look into assessing and tracking the pain. The best way to do it is, if you want to, just put down a few key indicators on how your pain is relieved and how it's exaggerated. Look into the quality. How would you describe the pain? How does it feel? Is it more dull, throbbing, sharp, electric shock-like sensation? Look into the radiation piece. Is the pain in one place, or does it move around the body? Where is the pain? What's the site and severity? On a scale of zero to 10, how would you rate it?
Lastly, looking into timing and treatment. When did the pain start? How often does it occur? Is it consistent or intermittent? Looking into the relation and timing of Parkinson's medication, if there are any changes in the on phase versus off, and are you getting the treatment? This is just a way to assess and track your pain from time to time. Look at it as the PQRST scale.
I'll share this PDF. It's the simple way that you can just use this chart on a weekly or daily basis to put down the key factors: how your pain is being relieved or how it's getting triggered, looking into the quality of pain, radiation, site, severity, timing and treatment. You can be very specific, or based on your style, you can put down the key indicators. This is important because this will help you effectively communicate with your team during your appointments with your neurologist, with your neuro physical therapist, and receive the right care.
I'll highly, highly encourage you to keep this tracker and do it on a weekly or daily basis to look at the pain patterns and understand what's triggering and relieving and how it's changing from day to day.
The next step is, as you're assessing and tracking, you want to look into finding ways you interact with your team and get the right resources. The first important step is making sure you're working with the team. You have a team of experts working together with you, helping you manage your Parkinson's and also helping you take care of your pain in Parkinson's.
You must be, you might be aware of this. It's really important to work very closely with your movement disorder specialist, your neuro physical therapist, occupational therapist, speech therapist, primary care physician, psychologist and wellness coach. Together is when you get the right care and you see the right resources. As you're working and coordinating your care, you want to make sure your movement disorder specialist is the key point of contact. Optimizing the anti-Parkinsonian drug is always the fundamental treatment option, so making sure you are coordinating, collaborating and working hand in hand with the team members.
Dr. Apurva Zawar 21:16
As we are expanding, we want to look into integrative care management. How does it work? Integrated care is a person-centered care that is aimed at delivering comprehensive and coordinated care. It involves a multi- or interdisciplinary team working across various settings and levels of care.
Individuals with chronic conditions are actively involved in their own care, as they are the essential partners in managing disease. The big takeaway from here is really finding ways you can lead your care, effectively coordinate and collaborate with your team, and seek the right resources.
Looking into different components of managing pain, both from the pharmacologic and non-pharmacologic side, you want to look into the three big domains. First is the medication. The majority of the time, optimizing the off phase helps you manage your pain better. Making sure you're discussing and communicating with your neurologist and looking into ways you can optimize, if that's an option for you, looking into the new medication treatment if that's an option, and having that conversation will be helpful.
Followed by looking into comprehensive physical therapy and occupational therapy. Again, it's a very targeted, personalized care approach, looking if there is an opportunity for you to work closely on looking into the changes or finding ways you can better manage and better address the underlying changes.
Lastly, the big portion, the big picture, is how you learn and hone your skills and better self-manage your pain and your Parkinson's. It really makes a difference when you have a broader understanding, deeper understanding, of your own ways to manage and also build and hone your skill sets on actively coping with pain and Parkinson's.
Dr. Apurva Zawar 23:33
It's important to look at more of the active intervention and gradually shift from the traditional or passive approach, where you're relying more on medication and intervention, more toward active engagement through learning, education and practice. Research has shown that active intervention, which requires an individual's effort, is more effective than any passive intervention. Looking into that piece, finding ways you can gradually shift and better navigate the care, and actively learn and practice the skills and trainings to help you better manage your pain.
As you're exploring and understanding the non-pharmacologic approaches and how they work, the primary goal is to help individuals build the tools and skills necessary for self-managing their pain, to reduce reliance on medication and to actively participate in physical and social activities. In my interaction, I've worked very closely with individuals, helping them adaptively problem-solve the situation and understand what ways they can manage their pain first.
How can they better process the pain? What's happening? Understanding and looking into where the pain is coming from, what their treatment options are, how they can cope with the pain, how they can address the pain right in time, and looking into different components. As you know, every day is different. At times, you might experience pain differently, and at times it might be very minimal.
Looking into the variability of pain presentations, finding ways you can take control and continue with your day-to-day activities and, meanwhile, also address the pain is important. It comes with practice, but building the right skill sets and collaboratively working with the team.
As we are understanding and discussing the self-management program and how it works, it's a systematic application of education and supportive intervention by healthcare experts to increase skills and confidence in managing health problems. The goal of the self-management program is to help you become the expert on managing your pain, give you the toolbox of skills, techniques, healthy habits and exercises that will help you stay active and return to prior activity levels.
It will help you become fitter and healthier despite your pain, and alleviate your fears or concerns about the pain provoked by activity.
Self-management is one of the key components in care management, and it really, really makes a big difference in helping individuals and the care team better manage their care. Especially when there is reduced complexity of the disease early in the disease course, self-management really makes a difference. It's highly emphasized and encouraged that you look into finding ways you can focus and receive the right training to better self-manage your condition.
Dr. Apurva Zawar 27:19
On that note, I'd like to share a study that was done for Hawaii residents. It was primarily a virtual pain and Parkinson's program delivery. It was a four-week-long program. The program was designed to help individuals with chronic pain better manage their condition, and it was four weeks long, eight sessions total.
It comprised different components. It included, right from understanding the pain neuroscience, looking into ways they can reconnect and retrain the nervous system, looking into flare-up management, freezing management and, lastly, focusing on re-engagement, how they can return back to a higher level of function and higher activities.
The way the program was designed was to primarily help them empower their pain understanding, looking into how they can effectively integrate their pain, understand the factors influencing the pain experience, and increase their confidence and autonomy in managing pain.
Focus on active coping skills, like shifting the health and well-being responsibility from the healthcare professionals and therapists to the person, and looking into re-engaging in life activities, increasing movement, and engagement with daily activities and social activities.
The key outcomes of this four-week-long program were primarily increasing their active coping strategy, decreasing their dependency on over-the-counter medication, improving their confidence and engagement in physical activities. Lastly, the program was effective in a group setting, as it allows for sharing of experience, learning from peers and experts, and feeling the change and confidence in better managing. Overall, cumulatively, there was a big shift in their physical activity, so there was a good amount of increase in their physical engagement.
Individuals were able to confidently take control of their disease and find ways they can actively manage their symptoms and take care of their health focus. All different domains were addressed, and it really helped toward the end to promote independence and help them return to higher-level activities in spite of their pain.
That was a big learning and a big result of our cumulative work together, and it empowered them in broadening their understanding and seeing how they can be more in control of their pain.
Dr. Apurva Zawar 30:32
Recovery is definitely possible with time. There are ways to help you better manage and better take control of your pain, and also give you the tools, training and collaborative work. It's possible to gradually return to higher-level activities. It's really important to just find and work with your team on how you can best address your pain.
Now, as you're learning so many new things, understanding the type of pain, recognizing it, differentiating it, assessing it, and finding different treatment options, what's the best way for you to take action today? Where do you begin today? This is a really, really important piece. I would like you to make notes, see what aligns with you, and start taking the right action, the right first steps, to get started in managing your pain.
First and foremost, you want to really start with initiating, tracking and maintaining the pain log diary. If you like the format of PQRST, where you can just put all different components and make note of it, excellent. If not, just tracking the pain on a scale of 10, with zero meaning no pain and 10 meaning high pain, where do you stand? Just putting down what the triggering factors were and what the relieving factors were will be a good start.
Then, whenever you get an opportunity to interact with your team, make sure you're effectively communicating and discussing your pain presentation with your neurologists, with your physical therapist, and other team members. It's really, really important you communicate with them so you get the right care and can look into the different options.
Following that, you want to collaboratively work with your healthcare team, finding ways you can use different approaches, both from the pharmacological lens and the non-pharmacological lens, on managing your pain.
Dr. Apurva Zawar 00:32:43
Lastly, you want to enhance your abilities to better self-manage and foster your confidence in managing your condition. I'll highly encourage looking into and reflecting on the days when you were able to manage your pain and symptoms very easily and very smoothly. Reflecting on that, learning what was different that day and what worked.
Again, also look at the days when you feel things didn't go well, when even any slight change triggered it. Opening yourself up to reflection and broader understanding will be effective as well. Then, looking into new techniques and new approaches. Are you someone who wants to learn more and dive deep into self-management techniques? How do you do it? Looking for and gathering those resources will be a good start.
Together, you'll be able to very effectively and very actively manage your pain. Again, I highly, highly encourage you to work with your team in creating the game plan and work very collaboratively to make a difference.
The key takeaways from today's talk are making sure that you're tracking, assessing, and communicating your findings with your providers; combining therapies and different interventions together; and remembering that living a full life with pain requires that you take an active role in the recovery process. Success is achieved when a person has learned to self-manage their condition.
Thank you so much for joining me today. It was absolutely a pleasure discussing and sharing about the different ways you can manage your pain and find different treatment options. I'll highly encourage you to download this chronic pain workbook. It will be a good resource for you to reflect and understand your pain patterns. I'm happy to answer the questions now. Thank you so much.
Dr. James Beck 00:35:03
Thank you, Dr. Zawar. That was a great presentation, really fascinating, the different aspects of pain. It's not just simply pain, but there's a lot more to it than I think may meet the eye as part of it.
It sounds like, as you've closed, really detailing and keeping a diary, a pain log if you will, of what your experience is, is really critical to being able to work with a healthcare professional around this. Is there anything you really want to underscore about that? I mean, is it something that people need to be fastidious about, or would you recommend the week before going to visit your clinician to do this? Because you could imagine pages and pages of this, which won't probably be effectively reviewed by your clinician. What's the happy medium?
Dr. Apurva Zawar 00:36:00
I'll say at least doing it on a weekly basis and making a note if you see any changes in your pain pattern during the on phase of medication versus the off phase of medication is important to track. Just noting down any new triggers or any constant triggers will give deeper insight to the clinician, like what is triggering the pain and what can they do for you.
Dr. James Beck 00:36:29
Got it.
Before I continue, I just want to let those folks in our audience know to continue to use the Q&A icon, and if you're on Facebook, please share your questions in the comments. My colleagues are busy organizing questions as they come in for me so I can ask Dr. Zawar. We get a lot of questions. There are a lot of people watching today, so we may not be able to get to them all. But my colleagues on our Helpline are standing by if your questions aren't answered.
With that, I just want to continue going on with some questions. What role does emotion play in perceiving pain, and how do you go from discomfort to pain? How do you advise people about that?
Dr. Apurva Zawar 00:37:17
Think of pain as an experience. It's a combination of your sensory experience, like what you're feeling, coupled with the emotional experience, like your instant feeling associated with the pain and the discomfort, and your overall cognitive processing, like how you're processing the changes and the discomfort going around. The key is to look at it as an experience versus just as a sensation or just a discomfort piece.
Dr. James Beck 00:37:52
Thank you very much for that answer, because I think a lot of people with Parkinson's often have, if not outright depression, certainly depressive symptoms. I wonder how that change in their outlook affects their interpretation of pain. Is that one of the reasons you think that we see pain as really persistent in Parkinson's disease?
Dr. Apurva Zawar 00:38:24
That's very likely, because many times what happens, I'll just explain how the brain interprets pain, how it interprets the overall pain experience.
Anytime you start feeling discomfort or start seeing any unpleasant sensation coming your way, like tingling or numbness, the sensation starts going and getting relayed to the brain area, and then it starts looking and processing it. It starts gathering information and putting your feelings in, based on your prior experience. So anytime when you feel resentment or sadness, like, okay, it's coming, your negative emotions also start getting more exaggerated. It just makes you think more on the negative side, like okay, your pain experience is going to be there, it's going to limit you doing your daily activity, doing your household chores, all that stuff.
It just gets you more toward the negative aspect, and it limits finding ways, like what can you do in the moment? How can you problem-solve? Where is it coming from? What is happening? That understanding, that thinking, really gets sidelined, and it's more the negative emotions and negative feelings of disappointment and stress that start growing. That's when it's really difficult for you to even understand the situation, and it just goes in a vicious cycle and keeps spiraling.
That's when it's really important, as you start with just the initial symptoms, initial discomfort, to acknowledge it right in time and gradually see how you can stop the cycle or how you can take an active step to break it.
Dr. James Beck 00:40:16
Is that the, because you talked a little about the PD Power Up program that was through a community grant from the Parkinson's Foundation, is that the approach you all take? So, help a person try to recognize the onset of these negative emotions so that they can perhaps put a stop to it. It may not make the pain go away necessarily, but your perception of it, it sounds like, is a big factor in pain. Can you elaborate a little bit more about that?
Dr. Apurva Zawar 00:40:50
The way we have designed it is first looking into how you can understand the pain neuroscience, like how does pain work, how does it affect you? Starting from that concept and moving away from pain as injury, pain as, you know, there's a lot of damage happening around, and moving more into an experience piece, looking into where the pain is coming from.
Then, tapping into how you can retrain the muscles and better reconnect the mind and body through training, through sensorimotor integration practice training. Also addressing a piece where you are looking into having a flare-up plan: the days when you have a sudden flare-up and it's really difficult for you to go with your daily activities, what to do, how do you take care of your freezing episode, because freezing and flare-up at times are associated together.
Lastly, how do you return back to exercise and more physical activities? Because it's really important to manage Parkinson's symptoms and also to help you manage your pain. Combining it together, working together with the team helps because it's a big learning curve, but through the peer support, through the clinical support and clinician support, we are able to do it together.
Dr. James Beck 00:42:10
Yeah, absolutely.
I have a question about that because you listed a lot of members of an ideal care team, but I know a lot of our listeners don't have those health resources available. Is this something that we're talking about here that someone can DIY, do it yourself, or maybe work with one or two professionals in order to be able to implement this type of, for lack of a better term, cognitive strategy in dealing with pain?
Dr. Apurva Zawar 00:42:45
Yes, definitely. I guess the first step to get started is tracking, because that's when you're reflecting on your pain experience as well. As you get into the pain tracking, then you're also reflecting, like what worked, what was different on a particular day, what was more effective? Then gradually, you start integrating all those thoughts together and seeing what's the best way for you to manage pain in the given environment, given situation.
That will help. Again, I have put together the course, which is all free. Feel free to access it, see how it looks, how it resonates with you, because learning is the big piece. It takes its own time to understand different concepts and integrate and practice it, but just starting somewhere with the self-reflection and deeper introspection will be a good way to go.
Dr. James Beck 00:43:44
Excellent, thank you.
One thing I thought was really interesting in your comments: one of the first steps to pain management is not reaching for the Advil or the Aleve, it's getting your PD medications right. What are your thoughts on that?
Dr. Apurva Zawar 00:44:02
Since there is increased pain sensitivity in individuals with Parkinson's, and many times because of the changes in dopaminergic pathways the pain incidence is higher, just looking into how you can optimize the PD medication at times takes care of your pain. That's really one of the first steps.
Anytime you're seeing your neurologist or movement disorder specialist, communicating about your pain experience is when they'll be able to look into if they can optimize the Parkinson's medication or have any new medication added to your list. That will be the way to go.
Dr. James Beck 00:44:47
Is it just a matter of communicating with your neurologist that you visit about the pain? I thought it was very nice how you outlined how to differentiate between what may be PD pain and what's not PD pain.
Is it worth talking with your neurologist and saying, like, I'm experiencing, because you had a nice little four-part, maybe it was five parts, sorry, little flowchart checklist. Is it worth reiterating that with them, like here's how it is, so you can convince them? Because I've seen some comments come through that individuals said, I have pain, but my doctor thinks it's just not PD-related. Is that an approach you would recommend for helping people?
Dr. Apurva Zawar 00:45:34
Thank you for highlighting that point. I'll definitely encourage that if you see your pain started following the onset of Parkinson's, make sure you communicate that and have that in your notes. When you see your doctor, tell them that your pain started around the time of Parkinson's diagnosis and it changes during the on and off phase.
Even if you see a slight change, make sure you're letting them know and asking them, what are the options when it comes to medication? Is there anything they can do for you, change your medication dosage or add new medication? Doing your homework by bringing all those important data will help the neurologist to give you the right medication or update your medication list.
Dr. James Beck 00:46:19
Fantastic, thank you. It was really interesting to point out, as you saw in one of the slides, and I've seen this before in some other studies, that pain, particularly shoulder pain, is one of the more common non-motor symptoms. What I've heard anecdotally is that a lot of orthopedic surgeons are diagnosing people and say, your pain's not bursitis, it's something else.
Is that related to, as we talk about with Parkinson's disease, the rigidity and stiffness that people feel, or is it more complex than that? Because, as you mentioned, people with PD have a higher sensitivity to pain. I'm just trying to, I guess what I'm getting at is how much is pain related to motor symptoms that people are experiencing versus being truly a non-motor symptom, which may be happening independently of people's tremor or dyskinesia?
Dr. Apurva Zawar 00:47:14
I'll say it's a mix of both, but definitely because of the changes in the motor symptoms, increased rigidity and stiffness definitely contribute to a higher pain experience, more of the increased pain intensity. Having that understanding, anytime you see your pain, especially in the initial days, is not changing irrespective of whatever you do, there is very slow or very minimal relief from anything, right from medication or any non-pharmacological treatment approach.
That's a good indicator and information that it's something else, not just the local changes or changes around the joints. That needs to be considered and discussed with your team, because there needs to be some big change when it comes to post-treatment. You should see a good amount of change after getting any kind of treatment. If you don't see any relieving factors, that's a sign where we need to further look into the different diagnoses and different treatment options.
Dr. James Beck 00:48:28
Are you suggesting, then, that it may be another issue? Because some of our listeners have commented that exercise seems to increase their pain. I wonder, is it maybe something else that's causing it? As we get older, our backs are not quite the same as they used to be, and some of the shooting pains can come from intervertebral disc collapse or bulges. As a clinician, how do you differentiate those individuals? Is it just a matter of a workup, pain management on the side? How do you approach that?
Dr. Apurva Zawar 00:49:08
Think of it as affecting your body as a whole. It's not just the local changes or changes around the joint, but there's a lot of changes happening around. At times, when an individual is getting started with the exercise, it might not be that easy or very comfortable to do even for a short time.
Start with the concept of working within your comfort zone initially and seeing how your tolerance is gradually increasing, and seeing what are the simple, easy exercises you are able to keep up or are consistent with on a regular basis. Doing that and seeing how you can increase it, or how the intensity is changing, how the tolerance is changing, will help you.
As and when you get to see your team, especially your neurophysical therapist and your neurologist, you really want to work with them on getting the right assessment, more of a multi-system assessment, seeing how you can address the issues going on, and how you can return and work on your key goals, because that will need more of a team approach.
From the individual side, I'll highly encourage, instead of just going with no exercise, just work within your comfort zone and see how you can select the right amount of exercise or exercise dosage to continue with the exercise movement.
Dr. James Beck 00:50:36
Excellent. A lot of questions are coming in about pain and sleep. Have you encountered complaints with pain around sleeping, going to bed, being asleep, waking up with pain, those types of situations?
Dr. Apurva Zawar 00:50:53
Definitely, because especially Parkinson's-related pain, with the changes in levodopa medication and especially during the off phase, the pain is more intense. That is a possible factor why you feel pain more early in the morning or experience pain during the time of your sleep.
That's when you want to also make a note of it and talk to your neurologist. Is there anything they can do when it comes to medication, if they can update it? Also find ways to see how it changes from day to day. If you experience three to four days where you have no trouble, what was different? Is there anything that you did differently? Do you want to look into it and repeat it on a regular basis? That reflection will help you solve it as well.
Dr. James Beck 00:51:47
You mentioned several times pain triggers. What are some examples of triggers that people should be on the lookout for, to just be thinking internally that, hey, this is associated with it? What are some classic ones that you've seen?
Dr. Apurva Zawar 00:52:04
Definitely postural changes. Anytime you see yourself sitting or sleeping in a not very comfortable position, that might be a possible trigger. Anytime you see yourself not following a time to stretch yourself, to find ways to ease your muscle tension, the pain can be more easily triggered.
Looking into seasonal changes, at times that might trigger. In females, hormonal changes. There are all different components which can possibly contribute. If you have other comorbidities and other inflammatory conditions, like osteoarthritis, the stiffness and age-related changes might also contribute.
I'll say that will be a lot of work for the clinical team to look into. But just making a note, to simplify it for the viewers, of what is helping or what is exacerbating, just simplifying it will be good enough information for the clinical team to work from there.
Dr. James Beck 00:53:13
Thank you. When it comes to managing pain, again, the first thing you said was trying to get your PD meds taken care of. But what about over-the-counter medications? What's the thought around that? Clearly, people need to be cognizant of other conditions that they have, but generally speaking, what about these over-the-counter medications that are available and trying to help manage these pains?
Dr. Apurva Zawar 00:53:39
The rule of thumb is to avoid the over-the-counter medication. Definitely, the recommendation is to look into the different non-pharmacologic approaches, right from body relaxation, using hot packs, cold packs, simple exercises like slow movement exercises, like tai chi. I know it takes a lot of energy and effort from the individual's end, and it also takes time to see the effect. But if you have the bandwidth, if you have the ability to get and do this, go for it.
In case it's not working, that's when you want to consider over-the-counter medication, but it really needs to be discussed with your neurologist and the physician before you do so.
Dr. James Beck 00:54:27
I guess we're really talking about chronic use of it. As you pointed out, when we talk about the different types of pain, there's the short-term pain where maybe some of the over-the-counter medication can help briefly. But I guess your point is if it's persisting beyond a certain period of time, don't keep taking those pills because there's something else that may be an issue. Would that be the time to go talk with your doctor?
Again, you've mentioned some different things, but perhaps as we close, it's a good time to reiterate, what are these guideposts that you have outlined for individuals? When do I go to my doctor? When is it PD pain versus not PD pain?
Dr. Apurva Zawar 00:55:08
That was a really good point. I'll just reiterate as well. Anytime it's acute pain, right after an ankle injury, you want to manage your pain, then the over-the-counter medication is the first option. But when you see yourself doing it for an extended length of time and just increasing the dosage of over-the-counter pills, that's when you want to consult with your team, especially the neurologist and the physician, and see if they are on the same page and if they prescribe the same thing. Start looking into the different components.
The majority of the time, it's been noted that individuals don't communicate to their doctors about their over-the-counter medication. Make sure you add this in your list when you see the doctor, so they are aware that you are taking this medication on a regular basis or your schedule for over-the-counter medication.
Dr. James Beck 00:56:10
Certainly. Last thing, because I know we're coming toward the top of the hour, neuropathic pain. There's a concern that there's a higher incidence of neuropathy among people with Parkinson's, especially the older population who may be comorbid, with diabetes and neuropathy. How do you manage that? Does that also fall into PD Power Up, or what is the approach for people dealing with this type of pain?
Dr. Apurva Zawar 00:56:36
Although neuropathic pain, definitely medication is effective in managing it, also looking into more of the non-pharmacological approach is starting right from postural training. At times, because of the change in the posture or excessive forward bending, side bending triggers the neuropathic pain.
Addressing that, finding ways that you can strengthen and condition the muscles around the nerve, and also looking into the neural tissue training, like the neural tissue mobility piece, where you get to work on the nerve length, where you get to find ways to relieve the tension and limit the sensory sensation, more like tingling and numbness, that's also one of the key ways to manage it.
Dr. James Beck 00:57:25
Fantastic. All right, thank you, Dr. Zawar. I really appreciate your time today and offering your knowledge on today's Expert Briefings and how to manage pain. Just to let you know, we had a tremendous response during the Q&A. We didn't quite get to everything, but again, if your question wasn't answered, I encourage you to call my colleagues on our Helpline, 1-800-4PD-INFO.
This concludes our Expert Briefing today. Next month, our Expert Briefing series will dive into an update on research and address how scientists are working to come up with new ways to end this disease. You can also learn more about our future topics and register at the webpage here on the screen, Parkinson.org/ExpertBriefings.
For our calendar year, the first one's done, and we're looking forward to seeing you again in April as part of that. Just remember, we are here if you need us. You can reach out on our website, reach out to our Helpline, either calling or reaching us by email are good ways to do that. We have professionals on our Helpline staff who really have a deep knowledge of Parkinson's disease. They're not clinicians and can't provide clinical advice over the phone, but they certainly have a lot of experience in helping people navigate their disease.
In addition, we have a number of resources that are available to people with Parkinson's: our awareness care kits, our library of information on our website, our podcast, and professional education. If you're a professional listening in, there's an opportunity to get CEUs or CMEs. Then, of course, we have the opportunity for people to learn a bit more about their disease through our PD GENEration study.
Before we go, as happens with the Zoom world, the screen's just going to go black, but we have a survey that will pop up. Please take some time to offer your feedback to us. What we do and how we decide on our Expert Briefings is really fueled by your feedback. We appreciate you taking the time to let us know what you think and how we can improve future sessions. Until then, take care, and we'll see you at the next Expert Briefings. Thank you again.
