The Victory Summit® Virtual Event

Motor Symptoms


June 24, 2022

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We hope you enjoyed The Victory Summit Virtual Event®: Motor Symptoms and Parkinson’s.

Below you’ll find the event materials, mentioned links, resources, the digital program bag, virtual exhibit hall, and more.

living well with Parkinson’s motor symptoms

Read the transcript below or click here to download.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

And now, I am absolutely delighted to welcome to the stage our founder, Davis Phinney. You may have met Davis. You may know about Davis from various events that you’ve checked in on before, you may have met him at an event in person that we’ve done, or maybe even on a bike ride. Davis is the founder of the Davis Phinney Foundation. He and his wife Connie founded the Davis Phinney Foundation back in 2004, with the idea that people, really people with Parkinson’s deserve to know more about living well and quality of life with Parkinson’s. And that is the inception of the Davis Phinney Foundation. Prior to being diagnosed with Parkinson’s at the age of 40, Davis was a professional cyclist, but for the last 20 some years, he’s really become a Parkinson’s advocate and leader in the Parkinson’s community. Yay Davis! and in 2015, he was honored at the white house as a champion of change in the Parkinson’s community. So welcome Davis.

Davis Phinney (Founder, Davis Phinney Foundation):

Thank you, Polly. And let me say hello to my people out there. Hey everyone. Thanks for joining us today.

Polly Dawkins:

Folks, you may say hello to Davis in the chat. If you’ve got questions for Davis, we’ll take those as well. Davis, I thought we could replay the whole video since we were without sound. Would you like to play out that entire thing?

Davis Phinney:

Yeah.

Polly Dawkins:

Sorry folks. You’re getting some thumbs up reactions. Feel free to use the reactions folks in there. We’ll send a link to that video. So, for those of you who missed it, you can see it after the fact. So how are you feeling today?

Davis Phinney:

I feel great. Thank you.

Polly Dawkins:

Great.

Davis Phinney:

I slept reasonably well and mindful that I was getting up to speak to the Parkinson’s nation, I went to bed early and took care of myself like I would as if I was going into a bike race or something today. So yeah, I feel good. Thanks.

Polly Dawkins:

Super. So that’s one of the things that I wanna focus on today is with you is the things that you do to feel better, especially as it relates to your motor symptoms. Would you tell us a little bit about your routine, what you’ve learned over the last 20 some years? What do you do every day to help with your symptoms and feel better?

Davis Phinney:

My primary complaint for motor control issues is balance. I mean originally it was tremor and I mentioned that in the video, but that’s been well managed by the successful DBS procedure over 14 years ago. And so, it’s more balanced and having my feet sort of stick to the floor when I’m trying to move around the kitchen or put dishes away, things like that. So, I find that I need to be mindful as possible of what I’m doing, and even there’s a split of what you and your Parkinson’s are managing and what you’re trying to accomplish with your hands like putting a dish away and not breaking and so I would say that that being mindful of whatever I’m doing and not introducing any more distraction into the equation is helpful. For sure.

Polly Dawkins:

Yeah. That’s interesting. We had Dr. Jay Albert’s speaking this week for us, a webinar on postural instability and freezing of gait. And he was mentioning that we’re always dual tasking. Even if you’re trying to reduce the number of distractions, as you’re mentioning to a bare minimum, what you’re talking about you’re thinking about your feet, and you are trying to put away a dish. That’s dual tasking.

Davis Phinney:

Yeah. Exactly. Well, and then when your feet are sort of stuck to the floor and you’re twisting your upper body, you’re, it’s a recipe for a bad outcome. But so, I’ve found that a lot of it is being aware of tactics. And so, my tactic is to wear a supportive house shoe that’s not so sticky, but not necessarily completely slippery either. And that works well for me to not have my feet sort of have the feeling that they’re glued onto the floor.

Polly Dawkins:

So, what does a house shoe look like for you? It is just something you can slip on?

Davis Phinney:

Well, and what I like about this is that it has a foot bed, which is supportive of my dystonic foot, where my left foot, my toes tend to curl under. And so, I need some support for my toes.

Polly Dawkins:

Yeah.

Davis Phinney:

And that’s, again, just a small idea of how you have to be thoughtful in every part of your actions.

Polly Dawkins:

Yeah. Yeah. Well, and I think it’s what we’re learning from this community, right is this crowdsourcing of ideas to make every day easier, sort like life hacks.

Davis Phinney:

Life hacks. Easy life hacks. Yeah.

Polly Dawkins:

We should brand that.

Davis Phinney:

And then also, yeah, well, it may be already overused.

Polly Dawkins:

Probably.

Davis Phinney:

In any case, but also, I go to the gym with some regularity. Now that COVID has changed my habits and I’m not doing the big classes currently, I go to a local gym with a Parkinson’s friend, Kevin Kwok, and we’ve developed a good routine of setting up various stations, which work on our balance and strength and core stability and that’s been actually quite helpful and is a lot of fun. And we used part of the time just to catch up and chat which is an annoyance to his girlfriend unfortunately, who’s waiting for him, but it’s good for us just to have that social interaction and then we get to it with the weight work out.

Polly Dawkins:

Yeah. So, somebody’s just asked in the chat, what is your exercise routine? You talk about going to the gym and doing this sort of circuit that you have created.

Davis Phinney:

Oh yeah. I mean, I’d have to show you, it’s hard to describe, but we have elements where we have light free weight in our hands, and then we’re balancing on a bosu ball. Yeah. If you know what that is.

Polly Dawkins:

Those half, those half balls.

Davis Phinney:

Half balls. Yeah, which makes it a less stable platform. And, you know, and you can do the weight as you see fit or just hold them in your hand. Or, and sometimes we’ll throw something to each other. And we’re always practicing our mind games, like name that tune, for whatever song is playing and the band and things like that. And or we set up a sort of grid pattern on the floor, with jump ropes and we’ll do various foot drills between the squares. And I find having that grid is very helpful as a cue because, you know, again, my feet are reluctant to lift off the ground of their own accord. And so, I think it’s really helpful to have a visual cue on the floor.

Polly Dawkins:

Yeah. That makes sense. And so, in addition to your gym workouts, what are other practices that you do to help with your motor symptoms and just your Parkinson’s in general.

Davis Phinney:

Well, I mean, my background is cycling, and cycling is proven to be so good, not just for me, but for so many folks and Jay Albert’s work has shown that. And so, I try to get out on my e-bike right. I mean, I make it a little bit easier for myself. I use an electric bike, but that said, I can still go as hard as I need to go and go up into the local hills and just enjoy being outside. And so, there’s that. There’s some amount of walking and hiking that I do with my wife. And so, you know, I mean, it’s mostly just being active, and I feel like that’s the vital piece that, you know, everyone hears from us about exercise, exercise, exercise, but it really is shown to be the one way that you can take back some power over this disease and the course of this disease.

And I feel like there’s a multitude, variety of ways that you could achieve that. And if you’re in a boxing class or tai chi class or dance class, those are all great forms of movement, but it’s just the key thing is that you’ve got to keep moving and you’ve got to be active. And to a degree, the more that you can do that, the better you’ll be served. And the longer you’ll have a period of wellbeing. I mean, I’ve had Parkinson’s for 20 years diagnosed, 22 years diagnosed and I’m still kicking pretty big, taking some big bites out of my kicks. So.

Polly Dawkins:

Well, good. Davis, thanks for sharing some of your tips and what you do to be active.

Davis Phinney:

Well, thank you.

To download the audio, click here. 

the what and why of parkinson’s motor symptoms

Read the transcript below or click here to download.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

So many of our audience don’t get time like this with their movement disorder neurologist. So, I’ll be asking you questions to set the stage, and then we will be collecting your questions from the audience that we can ask, we can ask you the expert. So, to start off and then again, I’ll take questions from the chat, we have such a wide range of people here with different years of diagnosis and obviously coming in from all different parts of the country and beyond, but can you start by telling us what’s happening in the brain with someone with Parkinson’s and how does it affect the movement and the motor side of Parkinson’s?

Suketu M. Khandhar, MD (Medical Director, Kaiser Permanente Northern California Movement Disorders Program, Kaiser Permanente Sacramento Medical Center):

Sure. Happy to do so. So deep within the brain, there’s an area called the basal ganglia. And within that area, there’s a little factory called the substantia nigra and that factory produces a chemical called dopamine. Now under normal circumstances, dopamine, when produced allows us to initiate, maintain, and steady our movements. However, if that factory, the substantia nigra no longer is able to create as much dopamine as it used to we start to develop stiffness, slowed movements, and ultimately a tremor. And so that really forms the chemical understanding as to why somebody starts to have pathology in Parkinson’s disease is really this difficulty in being able to produce and utilize this chemical called dopamine.

Polly Dawkins:

That’s super helpful. So, stiffness, tremor…

Suketu M. Khandhar:

And slowed movements.

Polly Dawkins:

Slowed movements. So those are the primary motor symptoms of Parkinson’s, or would you add others?

Suketu M. Khandhar:

I would add others, but let’s start focusing on just those three first, right? So, you know, in medical school, we always think about the triad of Parkinson’s disease, being tremor, slowed movements, and stiff movements. And, you know, we’re talking about rigidity, bradykinesia, and a resting tremor. Many people associate the condition with the resting tremor only and the reality is not everybody with Parkinson’s will develop resting tremor, a good 70% do, but what about the other one third? But what everyone does really ultimately develop is bradykinesia. In fact, the hallmark of the condition is bradykinesia or slowed movements. If you think about everybody that you know in your support network, everybody you know in your community with Parkinson’s disease, or anyone you’ve ever seen with Parkinson’s disease, they’re going to be slow in what they do. They’re going to have processing issues when it comes to motor ability to do things, their dexterity is a little bit off. They may be not having the normal arm swing or normal stride. All of that really revolves around those slow movements. You add a bit of rigidity to it, or the muscles just being tight and stiff. It makes with those movements to even be more difficult. And then a tremor of course, is one of the most visible of all Parkinson’s symptoms.

Polly Dawkins:

Yeah. So, focusing on bradykinesia for a minute. As I understand it, but you could tell us better, that affects everything in your body, correct?

Suketu M. Khandhar:

That is correct. So, if you think about what this dopamine is doing in the brain, you know, if we have an idea that we want to move, there has to be some planning involved in how we want to move and if that dopamine isn’t there, that motor planning, that motor initiation, that ability to make the movement all is somewhat compromised. And this is why we’re a lot slower at what we do. It’s not just that you don’t have enough gas in your gas tank. It’s the fact that even the whole system itself is just a bit rusty and just a bit slower. And we’ll probably circle back to that in just a bit, because that’s why exercise is so important and Davis said it so nicely, just a few moments ago, about how that really is sort of one of the cornerstones of treatment is exercise.

Polly Dawkins:

So, is it when we hear from our community that you all in the audience experience slowness of gut and digestion, is that considered bradykinesia as well? Or is that completely unrelated?

Suketu M. Khandhar:

I think, so for me, it’s related. And the main reason is because if you think about how the gut moves, the gut is kind of like a toothpaste container, right? You kind of push from the bottom and ultimately something comes out the end, right? Along the length of the gut, there are these bands of muscular tissue that basically work in synchronicity to push, you know, whatever’s within the gut along. And so, if those movements are somewhat slow, you’re really not gonna be able to move that along. You’re really not gonna be able to clear your gut. You’re really not gonna be able to absorb anything afterwards, simply because you are impacted. And so, for me that slow gut motility has almost everything to do with processing of gut muscles and that synchronicity that’s supposed to occur otherwise.

Polly Dawkins:

Got it. A question from the chat that somebody has asked, is the basal ganglia affected by Parkinson’s and does it affect movement?

Suketu M. Khandhar:

So, the answer is yes, part of the basal ganglia is the substantia nigra and all the connections that it basically projects to. The basal ganglia is a collection of a lot of nerve cells and a lot of nerve sort of collections. And one of them happens to be the substantia nigra, but so is the subthalamic nucleus, so is the globus palidus internus, so is the caudate, all these areas work in conjunction in order for us to be able to sort of do things and maintain our movement. So, is the basal ganglia affected in Parkinson’s? Absolutely. Where is the seat of where it’s being affected? It’s the substantia nigra, but also everything that the substantia nigra projects to.

Polly Dawkins:

Got it. Thank you. We’re focusing on movement today and motor symptoms, but since you’re first expert, I’m gonna go into some basics, a little bit of basics of Parkinson’s as well. So, can you tell us are there various subtypes of Parkinson’s and how do you categorize the individuals who come to see you?

Suketu M. Khandhar:

So, it’s a good question. And, you know, for me, Parkinson’s isn’t just one diagnosis. It’s a collection of diagnosis that are all sort of have common threads to them. And the common threads really being bradykinesia, the rigidity, and then also tremor, there is a fourth motor condition, by the way. And that’s postural instability, the inability to be able to maintain your posture and be able to stand upright and not be stooped over or not be at a risk or propensity to fall. So, when I see a patient with Parkinson’s, I have to recognize that they’re gonna fall somewhere along that spectrum. And are they someone who has classic garden variety type Parkinson’s disease, which is kind of what Dr. James Parkinson first described back in 1817 when he published his manuscript, the Shaking Palsy in the Lancet. And that’s really where somebody has for the most part equal parts tremor, equal parts rigidity, and equal parts bradykinesia.

But what about those folks who don’t have tremor at all? And they have a lot more in the way of bradykinesia and rigidity. And that’s what we like to call akinetic rigid syndrome. They’re a lot slower, a lot stiffer, and there are times where they just simply cannot move. Then there’s people who have only tremor and yet for the most part, their dexterity is relatively spared and they’re able to get around and move around and walk around. And they don’t really have a lot in the way of postural instability. And they don’t have a lot in the way of motor instability, but they do have quite a bit of tremor. In fact, tremor is the predominant symptom. And so that subtype is gonna be tremor predominant Parkinson’s. And then there’s a third or a fourth subtype rather, it’s something called postural instability in gait syndrome. It’s where rigidity and bradykinesia is absolutely there, tremor may or may not be there, but early on in the course of the condition, they’re so much more plagued by the propensity to fall. In fact, that may be the presenting symptom for them. That may be why they ended up going to the emergency room or to their primary care physician.

So, to summarize, when I see somebody in with Parkinson’s disease, for a second opinion or even really, a first encounter, I’ll try to subcategorize them into one of four categories. Do they have that classic Parkinson’s picture where everything’s about equal? Do they have that more tremor predominant picture? Do they have more of an akinetic rigid without much tremor picture? Or are they more plagued by their instability in gait syndrome?

Polly Dawkins:

Got it. So then as a clinician and a provider, you try to figure out which sort of subcategory, do you treat people differently depending on which subcategory they fall into in your mind, or is there a path that’s different for one person versus the next?

Suketu M. Khandhar:

Absolutely. And so, I think this is important to express to the audience is that, you know, you can’t treat every individual the same way, right? This is a designer disease. And therefore, our approach to treatment has to also be equally designed or tailored. And so, if we as the clinician can be a bit more precise on what subtype of Parkinson’s you may have, then we might be a bit more precise on what types of treatments and more effective treatments can help them achieve a better quality of life. Now, why is this important? It’s important because our job as providers, you know, in a world where we currently do not have a cure for Parkinson’s is not to help you be rid of the Parkinson’s, but make sure it’s manageable for you, make sure that you recognize that there are ways in which we can actually improve your quality of life and help you engage in life in a much better, more meaningful way.

So, let’s give a couple of examples. Somebody who’s got that classic Parkinson’s picture where everything’s about equal. They tend to respond pretty favorably to medications. They’re the ones who ultimately get that really robust ON response. They’re someone who actually may notice when the medications wear OFF. And so when we talk about that ON OFF phenomenon and, you know, people wanna feel that that medication’s doing something for them, and if they really do get that, it’s more likely that it’s gonna be classic Parkinson’s disease, somebody with tremor predominant Parkinson’s, no matter what you throw at the tremor, tremor tends to be pretty stubborn, may not always respond to medications, may not always respond to a variety of medications. And therefore, thinking that if tremor is gonna be that stubborn, we may consider after a few trials of medications, maybe considering early, you know, sort of thoughts about deep brain stimulation.

I mean, the fact that deep brain stimulation even came to existence was because tremor tended to be quite stubborn. In fact, if you were to go to Europe and ask many of the specialists who practice in the movement disorder space, many of them will say that tremor is just resistant to meds, cycle through the meds pretty quickly, and consider surgery early. Then somebody with akinetic rigid syndrome may have a chance to respond to medications, but you’re really gonna wanna focus quite a bit on the physical therapy piece. And then somebody with that postural instability and gait disorder hardly ever will respond to medications. And this is where you really need to capture the attention of the physical therapist early on and help them understand what types of postural exercises they need to do. How can they keep and maintain their upright position? How is it that they should exercise and maybe more aggressively, or do they need an assisted device, like a walker or maybe a specialty walker to help them reduce the probability of them falling? So again, you know, really tailoring how we treat people is gonna be really contingent on how we diagnose somebody.

Polly Dawkins:

Yeah. That’s really helpful. Somebody has asked about postural instability. They’ve said that their podiatrist said that their toes and toenails have been affected by postural instability. Can you explain what’s going on with the toes and the feet in Parkinson’s?

Suketu M. Khandhar:

I’m assuming that this audience member probably is developing something called toe curling dystonia. If you think about it, when we stand up, we’re putting all of our body weight and all of our center of gravity on two little areas of surface areas, right? Just whatever’s on the sole of our feet. And if you happen to have high arches, it’s even less surface area than that. It’s really remarkable that we, as humans can actually even stand upright, right? Maybe opposed to other animals in the animal kingdom. And so, if our instability, or if our postural stability is off, right, we have to rely on quite a bit to help grip the ground or feel like we’re gripping the ground in order to maintain that stability. And so, our toes will naturally curl under, right, in order to actually feel like we’re keeping ourselves upright.

A lot of patients with Parkinson’s will actually have toe curling dystonia first thing in the morning before they take their first dose of levodopa or other medications. So, it’s very common for that toe curling to occur. And when that happens, it can be quite painful because you start having your toes stay in those positions, not to mention it’s difficult to actually do the hygienic nail cutting or clipping. And then those toes kind of dig to the ground and then gives a lot of people, quite a bit of pain. So, recognizing that there’s toe curling dystonia and trying to treat and target that is really important, kudos to the podiatrist for calling it out.

Polly Dawkins:

Yeah. What are, any ideas strategies that people can use for toe curling dystonia?

Suketu M. Khandhar:

If it’s responsive to medications, it may require just an adjustment to medications. For a lot of my patients who have it early morning, who cannot wait for their oral levodopa to kick in quick enough, I might use an inhaled version of levodopa because it kicks in a lot quicker. I might give them a long-acting levodopa at nighttime or in the middle of the night so it still stays on board when they wake up in the morning. But let’s say it’s not responsive to medication, then physical therapy and stretching out those toes. Sometimes a simple method of if you were to take one of those therabands, you know, those rubber bands that people use for rehab and kind of rope it over your foot while you’re sitting and then pull back on it as if you’re, you know, trying to reign in a horse, that sometimes helps to stretch out the sole of the foot. This was a technique that was taught to me by an old school physical therapist and it’s amazing how much our physical therapist have learned over the years and what they can impart to us and we’re always learning. And then the last thing, if those things are not successful is to consider botulinum toxin injection, and inject that into the sole of the foot, which of course can be painful, but also can relax the muscles that tend to be curling under.

Polly Dawkins:

Does that make your feet less responsive or numb, and therefore harder to actually walk because you’ve had botox injections in your feet?

Suketu M. Khandhar:

Not necessarily. What makes Botox lead to numbness is when you’re injecting it subdermally and not into the muscle. This is where you wanna inject it directly into the muscle, thereby relaxing the muscle. And therefore, you shouldn’t really get a lot of numbness from that. So, it really depends on the skillset of the individual who’s doing the injection. Sometimes it could be a podiatrist. Sometimes it could be a rehab physician, and sometimes it could be the movement disorder specialist. Typically, general neurologists, unless you’re in an area where the general neurologist kind of is a Jack of all trades and master of all trades as well. They do it, but in most large volume centers, the general neurologist usually does not.

Polly Dawkins:

I’d like to back up a tiny bit to the beginning of your relationship with a person with Parkinson’s and your diagnosis. What would you recommend to your patients or to our audience members that they can do to best prepare to meet with you the first or second or every time they meet with you? Cause you get 15 minutes, right? Maybe half an hour, if you’re really lucky and it’s a couple times a year?

Suketu M. Khandhar:

Correct. So, for me, and I’m gonna, let’s say, so we’re basically talking about somebody who’s already been diagnosed, right? And so if they’re already diagnosed and they understand their Parkinson’s a little bit, I think it’s always important for you as the patient, as well as your care partner, your loved one, your spouse, your child, your friend, to understand what are the symptoms over the last X number of months, or a certain amount of time that have been plaguing you the most? Is it the tremor? Is it the postural instability? Is it that toe curling dystonia? Or is it a non-motor symptom? Oftentimes we tend to focus on the motor symptoms because they’re the most obvious. And then we monopolize all of our time in the office with the motor symptoms and therefore we never get a chance to talk about the non-motor symptoms, which sometimes are quite a bit more challenging and even a little bit more difficult to treat.

What about that fragmented sleep? What about that swallowing difficulty? What about that constipation? What about that pain in the feet? Or what about urinary dysfunction or how about a mental health issue such as apathy or depression? So, my suggestion is if you have limited time, you wanna make sure that you optimize your time with the specialist. You optimize your time there in the office, and you probably list off the, you know, top three to five questions. Gosh, I can tell you how often I tell this to patients. And of course they come in with 45 questions and we never have enough time for 45 questions, but the top three to five questions that I want to have these answered by the end of the visit, I really need to have a better understanding from this, or I need to know where I can go to get good information on this.

And so, part of the empowerment that patients and their loved ones should have before they come in to see the doctor is to understand their own condition, go to the Davis Phinney website, go to other Parkinson advocacy websites, understand Parkinson’s disease and see where your problems are plaguing you the most and ask the questions that you need to ask. But if you focus yourself a little bit during the office visit, and you have these questions already prepopulated before you go in, then it’s going to make for so much more of a meaningful visit, you’re gonna walk away satisfied rather than kind of feeling, gosh, I wish I had written that question down, or it happens all the time, it’s Murphy’s law where you go in there and you’re like, I had a question to ask, oh, I’ll remember it afterwards. And of course, hardly ever, does anyone email me afterwards to say, oh, this is the question I wanted to ask.

Polly Dawkins:

Oh yeah. So, going back to motor symptoms is there a link between the severity of motor symptoms that some people with Parkinson’s experience and the non-motor symptoms that they experience?

Suketu M. Khandhar:

In my experience, I’ve noticed both progress with time, but both won’t necessarily progress in the same fashion. Sometimes the tremor can be relatively stable for a few years, particularly if you are treating it right. If you’re on medications for these things, you know, and most of our medications for Parkinson’s kind of focus on the motor, well, maybe we don’t see much change in the motor aspect, but now we see quite a bit of change in the non-motor aspect. So, what I see is someone who’s relatively well treated from a motor perspective and they’re exercising and they’re, you know, having a good, positive attitude. It’s really the non-motor symptoms that then get ahead of them. And so, most of our attention then is focused on the non-motor piece. It does not necessarily mean that the non-motor is progressing quicker. It just means that the motor is being treated and therefore now the non-motor kind of, you know, sort of takes over. So, I don’t necessarily see the two progress in the same fashion. I see them progress independently, but they progress nonetheless. And I think for the audience to appreciate that there are non-motor symptoms of Parkinson’s, you know, and if you’re not sure whether something is related to Parkinson’s or not, it’s not a typical symptom that you associated with Parkinson’s just ask, hey, is this constipation part of my Parkinson’s? You may end up asking your primary. You may end up asking your neurologist, but just ask.

Polly Dawkins:

Yeah. Good point. So, staying with the progression question, because we get so many questions about, and it’s such a big concern for our community, when it comes to motor symptoms, do all motor symptoms get worse?

Suketu M. Khandhar:

The answer is yes, and some motor symptoms are more worrisome than others. So, the bradykinesia or the rigidity or the tremor doesn’t worry me as much as the postural instability does because with postural instability, it doesn’t respond very well to medication. It requires a good physical therapist or a good exercise program to really achieve some degree of input and improvement. But that’s what is ultimately gonna lead to a fall. And sometimes a fall is a ticket to the hospital. Sometimes a fall, you know, warrants a need to be in a skilled nursing facility for a while. And those things change people. They change people from a mental health perspective. They change people from a motor perspective. So, are all motor symptoms of Parkinson’s equal? No, not necessarily. For me, postural instability is the one that I personally tend to focus on a lot more simply because it’s the one that I worry about that if not treated well, if not addressed early, then we’re gonna see fall risk.

Polly Dawkins:

Yeah. And one of our speakers at the end of this session today is a doctor of physical therapy and she’ll be focusing really on postural instability and falls and fall risk. And what you all in the audience can do to prevent falls.

Suketu M. Khandhar:

Oh, wonderful.

Polly Dawkins:

That’ll be a great compliment to what you’re saying. So, let’s focus on one of the things that you said at the beginning. Since the next speaker, Dr. Aaron Haug is gonna be focusing on medications and really doing a deep dive into the medications for motor symptoms. Let’s talk about the complimentary therapies or treatments that don’t involve medications that can help people improve their motor symptoms. And I know one of the first things you said was exercise and Davis talked about exercise.

Suketu M. Khandhar:

That is correct.

Polly Dawkins:

Tell us what things people can do.

Suketu M. Khandhar:

So, let’s start with the exercise piece, because we all hear about how important exercise is. We all hear about exercise potentially being neuroprotective. We all hear about exercise potentially slowing the progression of the disease, and maybe the only thing to do so, but how much exercise, what kind of exercise and the reality here is that there’s a lot to choose from, right? If you look at the sort of evolution of Parkinson related exercise from the John Argue method to LSVT to LSVT Big to PWR to Boot Camp, to tai chi to yoga, to, you know, rock steady boxing, right, or cycling, all these things have been deployed in the use of Parkinson’s disease. And when we do research, we try to look at one aspect of exercise and its impact is on somebody. But reality here is that you could do any of these things. And you could do a combination of these things. The studies usually out of Europe, maybe out of the Cleveland Clinic and a few places in the states, oh, dance as well. I see that in there as well. My apologies. So, all of these are wonderful, but the recommendation is 40 minutes of high intensity or aggressive exercise, six days out of the week.

Wow. So that’s the numbers that I give my patients. And when they ask what is high intensity exercise, it can involve any of those things that I just mentioned, but it has to be high intensity. So, what is exactly high intensity? It’s when you’re doing these exercises, you cannot carry normal conversation during that time. Okay? So, think about that brisk walk that you might take with a pal as you go around the block and you’re chitchatting the whole way through, that’s not high intensity, it may be a brisk walk, but it’s still not high intensity. You should not be able to carry normal conversation during that time. So, if you are able to do that 40 minutes out of the day, six days out of the week, that’s what the studies have shown that will alter the change sort of the trajectory of Parkinson’s care.

Other complimentary treatment…

Polly Dawkins:

Can I ask question?

Suketu M. Khandhar:

Oh please.

Polly Dawkins:

So that feels inaccessible to some folks I’m sure and that feels really aspirational as well. Do you have suggestions or ideas that you talk with your patients about how to get started on that on cause starting with six days a week, 40 minutes a day is hard.

Suketu M. Khandhar:

It is, you’re right. And like anything that you do that involves exercise, you’re gonna wanna start slow. And you wanna start at something that is achievable, right. Make a goal that’s within reach. And when you reach that goal, make another goal that’s within reach. And then ultimately the aspiration is to get up to 40 minutes, if you can. I have some patients doing quite a bit more, but I’ve seen folks who were so dependent on their walker. So dependent on needing a wheelchair to get from the hospital parking lot to my office, who after kind of deploying these ideas a year later are able to walk in unassisted. So…

Polly Dawkins:

That’s powerful.

Suketu M. Khandhar:

You know, correct. It is powerful, right? And when you start seeing these improvements, you start having more of a positive attitude. You start having that light go off in the back of your head going, oh my gosh, I can do this. And you start feeling better about yourself. Maybe mood is also lifted as well. Of course, along the way, you’re gonna have to talk to your neurologist about what kind of medication adjustments are required and things of that nature. So, it’s not just exercise, it’s exercise plus the meds.

Polly Dawkins:

Yeah. Somebody asked, can too much exercise be, let me look at the question. I think it was something like does is too much exercise a bad thing for Parkinson’s?

Suketu M. Khandhar:

In theory no, but the reality is it’s gonna fatigue you. So, know what your limits are, right. If you start off the bat with an hour of exercise and you know, you end up becoming that weekend warrior, you know, you’re gonna be down for the count on Monday. I’d rather be that you don’t be down for the count on Monday. I’d rather it be that you achieve something that’s achievable. Feel good about yourself. Feel like you did something, accomplish something, and slowly work your way up. But if you overdo it just like any of us, if we overdo it, we’re gonna need a couple days of rest. And I’d rather that you don’t take the couple days of rest. I’d rather that you actually keep up at that same pace. So yes, there is a limit to what you can achieve and what you can do. So certainly, know what your limits are.

Polly Dawkins:

Okay. Super. So, I interrupted you as you were about to talk about the next thing.

Suketu M. Khandhar:

I think one thing we don’t often talk about, or maybe sometimes providers feel that they don’t know enough about is basically supplements, supplements and good eats, right? I mean, we all talk about healthy diets. We all talk about wanting to eat more of that Mediterranean type style diet, you know maybe everything in moderation, not too much of anything, you know, fresh fruits, fresh vegetables, try to avoid the dairy a little bit, try to avoid red meat. We all know most of that. Right. And I’m not gonna reiterate that, but I think it is important to kind of monitor. Drinking plenty of water. That’s also really important, right? I mean, particularly like, I’m in Northern California, it’s gonna be a hundred degrees here today. Drink a lot of water, you know, more than you think you need and monitor it, right.

Measure how much you’re drinking, how much you’re eating and what you’re eating. You’ll be surprised because you think you might be doing well. And maybe you have a little bit of a, you know, room for improvement. When it comes to supplements, I always tell patients, you should take basically a multivitamin with a B complex, B as in boy, simply because most of the B vitamins really encourage good spinal function. And that’s something that you’re gonna need as you sort of embark on your exercise program. The other thing is vitamin D, D as in dog, I think that a lot of us have been dissuaded from going outside because of the, you know, sort of this risk of skin cancer and exposure to sun. And so, we slather ourselves with a million SPF and we try to avoid that. But the reality is many of us actually do have low vitamin D levels, but vitamin D is required not just for bone growth and matrix, but it’s also good for memory.

And so, I always encourage patients, you know, get your vitamin D checked and actually see if it’s low. And if it is, go ahead and take a supplement of vitamin D. Taking vitamin C very helpful, particularly if you’re on levodopa, because it helps to encourage the absorption of it. If you were, so those are things I usually recommend. There are a few other supplements that are not commonly spoken about like coenzyme Q10 or glutathione, particularly internasal, and a few others that also might be, you know, might be helpful in Parkinson’s, there’s some data to support it. Not a lot of data though, but these are also relatively safe. And so, these are things I probably would encourage that if you are interested in talk to your neurologist and see if it’s something that they’ve had experience in and just have that healthy conversation, if it’s something that you should try yourself.

Polly Dawkins:

Thank you. Looking back through all of the years that you’ve been doing this work, Suketu, when you think about, is there a theme or a trend to people who are doing better with Parkinson’s? What are they doing to live better?

Suketu M. Khandhar:

That’s actually a good question. I think they’re the folks that basically deploy a strategy of three things. And I think I’ve given this talk before, around this topic to the National Parkinson Foundation. And those three things are the right medications, and remember more is not always better. So, the mark of a good provider is not just the fact that you can prescribe, but recognizing when you’re not supposed to. And so, one third of this sort of strategy is to make sure you’re on the right dose of meds. One third of a strategy is to make sure you’re on the right therapy program, exercise program, activity program, but one third involves positive attitude and empowerment. And that might mean you gotta go look up some stuff that might mean you need to understand what your condition’s about. That might mean you wanna engage in a support network locally. I mean, you actually go to the Davis Phinney Foundation. There’s so much information that’s out there that’s wonderfully vetted by experts. And those patients who use that strategy of the right dose of meds, the right therapy program, and self-empowerment do a lot better than those who don’t.

Polly Dawkins:

That’s powerful as well. Yeah. I’m gonna take some questions from the audience since there are so many. Back to your recommendation or what the literature says about exercise. Can you break up the 40 minutes as you’re trying to aspirationally get to that? Could you break it up into chunks, a couple of 20-minute chunks or a couple of 10-minute chunks?

Suketu M. Khandhar:

The answer is yes, but no study has really shown where there are four, 10-minute chunks are better than one 40-minute chunk. The studies almost always look at the 40-minute chunk or a longer stretch. I can only imagine however that the four, 10-minute chunks are probably going to be helpful. I don’t know for sure if it’s gonna be as helpful, but I think you can break it up. And I think that if you require some rest time or downtime in between those times, that’s perfectly fine with me.

Polly Dawkins:

Great. There’s quite a few questions about fatigue and energy levels. Some folks who are dealing with post Covid, fatigue and saying short nap, but is there anything that people can do to sort of decrease the frequency of those energy crashes or the fatigue?

Suketu M. Khandhar:

There’s actually quite a few things. So, fatigue is something that’s just gonna come along with Parkinson’s, it’s one of the more common non-motor symptoms, and just to kind of break it down, the reason why it happens is if you think about the circuitry that’s off in the brain, right? That basal ganglia circuitry that’s affected by Parkinson’s disease. Your brain is trying real hard to reconcile, is trying real hard to compensate for the problem. And that’s fatiguing in and of itself. Right, somebody with Parkinson’s is working a lot harder than somebody who doesn’t have Parkinson’s to achieve the same thing. And at some point it’s going to compromise them and be fatiguable. What was it? The Michael J. Fox had said that don’t mistake my bad days for a sign of weakness. Those are the days I’m fighting the hardest. And so, fatigue just comes with the territory.

Now, are there things that we can do to help improve fatigue? The answer is, yes. Let’s look at our sleep pattern. Are we sleeping well? Do you have REM sleep behavior disorder, which is where people actively act after their dreams? And there are treatments for that. There are medications you can take at nighttime for that. Are you actually not able to toss and turn in the middle of the night because you’re so stiff and your dopaminergic medications have worn off. Do you need an adjustment to your medications, particularly something given at night? Do you need to have a rescue therapy if you wake up in the middle of the night to go to the bathroom? Are you having fragmented sleep because you do end up going to the bathroom so many times in the middle of the night? And can that be treated? Are you having difficulty during the day because you are go, go, go like, you know, our American psyche is such that we always are on at 60 miles an hour. But have you slowed yourself down a little bit? Have you broken up your day into certain chunks? You know, are you doing your exercise program when you expect your meds to be on board rather than when your meds are wearing off? And is that fatiguing you? Are you drinking plenty of water? You know, so these are all things that if fatigue is a big issue for you, can we recognize certain things that are contributing to it that we actually have control over?

Polly Dawkins:

Yeah, it they’re so interrelated, aren’t they? Yeah. I think about the advice that Davis and his wife Connie give me sometimes, which is you gotta rest, right athletes rest. And this disorder, this Parkinson’s condition requires so much output of energy that rest is a critical component to recovery and being able to continue to…

Suketu M. Khandhar:

You know, Connie said something to me a couple years ago when we did that that Shelter in Place podcast series that I did back when the pandemic first began and Connie was a guest speaker and she gave a tip that I use in my own life and my own family is that, you know, fatigue is something that’s not just motor, it’s also mental, right? So, if you have mental fatigue, that’s also gonna wear you out just as much as motor fatigue will. Well, mental fatigue comes from the fact that we’re thinking all the time, right? And so, what Connie does, and I know Davis is on the call as well. So, he probably will attest to this is that after 6:00 PM, they don’t watch any news. They don’t watch anything that’s too activating. Certainly, there’s a lot going on in the world.

There’s a lot of angst and there’s a lot of worrisome things that happen in the world right now. And so, if you monopolize your mind with all that in the evening, you’re gonna have a hard time sleeping. You’re gonna have a hard time, you know, feeling like you can get to a place where you can sleep more soundly. And so, I thought that was a brilliant thing. So even in my family, with my kids and my wife, we don’t watch the news. We don’t read the news after 6:00 PM, we’ll do it in the morning, you know, understand what’s going on, but we don’t do that. You know and then I think what Connie said, she watches, what is it, Seinfeld or 30 rock or one of those, you know, those wonderful shows. Yes. Wonderful shows that are just funny. Exactly. Yeah. And I think that can be helpful too.

Polly Dawkins:

Great. I’m looking at some of the questions here. While, they may not be related to motor symptoms, I’d love to ask you them because you’re here.

Suketu M. Khandhar:

Sure. Of course.

Polly Dawkins:

One is about double vision and Parkinson’s, and the person says, who cares for eyes with Parkinson’s? Who should you see? Who should be on your team?

Suketu M. Khandhar:

Good question. The easy answer is an optometrist, not necessarily an ophthalmologist, which is an eye surgeon, but an optometrist. And the main reason is because if you think about it, your eyes are moving synchronously because of the eye muscles behind it. Well, those muscles are not spared by Parkinson’s. They also are gonna be having some degree of fatigue ability, some degree of rigidity, some degree of bradykinesia and may or may not respond to medications. So sometimes if the eyes are not moving in sync, you’re going to have one eye that’s moving a little bit differently than the other eyes moving. No different than maybe your arm swing being a little bit off one side from the other. So, if that happens, whatever field of view, that one eyeball is picking up is gonna be a little different than the field of view that another eyeball is picking up.

And when those images become super imposed on each other in the back of the brain where our visual cortex is, it will not be the same image. It will be a slightly off, and this is why people develop a little bit of double vision. And so double vision is so common in Parkinson’s, you know, whether you wanna call it conversions insufficiency, or there’s a risk for other high disorders, like glaucoma, cataracts, things like that as we age. I think it’s important for everybody, every year to see an optometrist, see whether glasses would be helpful, particularly with prisms in them to be able to reduce some of that convergence insufficiency. And if there is glaucoma or there is cataracts, then seeing an ophthalmologist. So, the Parkinson’s specialist, the neurologist, they may be able to explain some of this, but when it comes to treatment and better understanding visual issues, it’s really an optometrist that’s gonna be the first place that you’re gonna visit.

Polly Dawkins:

And is there a specialty of a neuro optometrist who really specializes in the connection between the brain and the eyes? Or is that not a…

Suketu M. Khandhar:

No, there is a neuro ophthalmologist, and these are basically some folks who have done an ophthalmology residency and then a fellowship in neuro or sometimes neurologists who then did a fellowship in ophthalmology. Oftentimes they can really better parse out what exactly is going on. But many times, the answer still falls back on, hey, I need prisms or I might need surgery, or I might need, you know, cataracts to be removed. So, for me, it’s almost always best to start with the optometrist and then move to an ophthalmologist. Also, the thing is an ophthalmologist, particularly neuro-ophthalmologist, they’re not in every location, and they’re pretty rare to come by. They’re even more rare than a movement disorder specialist. So, for example, in our network, in Northern California Kaiser with nearly 10,000 physicians, we only have two neuro ophthalmologists in the whole organization. Academic centers may only have one or two, depending on the, you know, how large their facility is. And so, you know, I think that maybe the more complicated cases certainly should go to a neuro ophthalmologist but starting with an optometrist and then a regular ophthalmologist is probably fine with most people.

Polly Dawkins:

Got it. Yeah. All right. We have a couple of questions about medications. I’m gonna save those for Dr. Haug, when he comes on in just a few time. Let’s see, this might have been answered with your last question, but somebody asked, could you discuss visual spatial problems related to Parkinson’s?

Suketu M. Khandhar:

Yeah, and I think that’s goes along the lines of what I said before is that if you’re picking up a little bit something different on one eye, you’re gonna pick up something a little different on the other eye and your visual spatial will be a little bit off. It’s not uncommon for Parkinson patients, if they’re trying to step off the curb for them to miss that fall because of it. Visual spatial issues also, I think thinks kind of lends to freezing of gait and difficulty with that. So again, seeing an optometrist, seeing whether you need glasses, seeing whether we can reshape what it is that you’re seeing in your field of view can be very helpful. So visual spatial issues, unfortunately, are quite problematic with many of our patients, particularly when it comes to them wanting to walk or them feeling comfortable when they do so and not falling.

Polly Dawkins:

Yeah. Last question for you. And even though there’s a zillion questions from the audience, we will get to most of them. So, you talked about low dopamine and being a hallmark of Parkinson’s, can low dopamine levels cause muscle or ligament or tendon injuries to heal more slowly?

Suketu M. Khandhar:

Not necessarily. It’s just that you don’t have the muscle strength to be able to recover so well. And so, I think optimally treated patients will recover better than non-optimally treated patients. So, if somebody has low dopamine and they’re not on a high dose of, or a good dose, not high dose, a good dose of dopaminergic medications, trying to recover from an injury is gonna be a little bit more challenging. You know, for me, optimal treatment is not just about getting through your day but making sure if something were to occur, some crisis situation, that you also can recover from that as well. So, for example, I try to optimize patient medications just before they go in for that typical knee replacement surgery, or before they go in for that hip replacement surgery, because many of our patients do require those things but if you’re not well treated before that, how do we expect to recover well after that?

Polly Dawkins:

Good point. We could carry on this conversation for another half hour. I’d like to ask you, would you be willing to come back sometime and speak to our audience again?

Suketu M. Khandhar:

Absolutely. It’s always a pleasure.

Polly Dawkins:

We really appreciate your time and your expertise and the commitment that you have to helping people with Parkinson’s live well today.

To download the audio, click here.

A Primer on Bradykinesia and Parkinson’s

Utilize the Davis Phinney Foundation’s Worksheets, Checklists, and Assessments to track your symptoms and medications

For more on accessible ways to incorporate high intensity exercise in your daily routine: [Webinar Recording] Neuroplasticity, Exercise, and Parkinson’s

[Webinar Recording] Sleep

Shelter in Place Podcast featuring Dr. Suketu Khandhar and Connie Carpenter Phinney

[Webinar Recording] Pain and Parkinson’s

[Webinar Recording] Men and Parkinson’s

LSVT Physical Therapy

APDA’s Symptom Tracker

medication management for motor symptoms

Read the transcript below or click here to download.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

Welcome.

Aaron Haug, MD (Neurologist and Movement Disorders Specialist, HealthONE

Neurology Specialists):

Thank you. Thank you. I’m happy to be here. Yeah. I love talking about this. This is a conversation I have one on one with many patients every day, and it’s nice to be able to try to lay out as much of it as possible, kind of all in one setting because there’s not always 45 minutes to talk about all the medication options at every visit.

Polly Dawkins:

Well, that’s what we have today, and we’ll take questions from the audience. We have some slides to share, to help folks get sort of grounded in medications. But let’s start off to get this right, medication management, and we heard that from Suketu as well, is really critical to living well with Parkinson’s. We also know that some people choose not to take medication for a while and that others are taking sometimes a handful of pills, literal handful of pills a day. No matter where somebody falls on that continuum, I think it’s important to understand the different types of medications that are available and to manage the motor symptoms. And we’ll talk about the non-motor symptoms a different day. We have content on that for folks. So, let’s start with the basic, how do we know when it’s time to start taking medication?

Aaron Haug:

Yeah, it’s a basic question and it’s a big one. You know, when someone comes in and is first diagnosed with Parkinson’s or maybe they’ve been diagnosed and have been wanting to wait on taking medications because they just have never taken medicines or they’re already taking too many others. It’s always a question of when do we start? And the answer that I, and most movement disorder specialists would give is that when your symptoms are interfering with your daily life, either how you feel, how you’re able to work, how you’re able to participate in your leisure activities and hobbies, anything that’s having a negative impact on your quality of life, whether it’s the slowness, the bradykinesia that it’s hard to wipe a countertop or wash your hair, or the tremor that two thirds of people with Parkinson’s will have at some point. If it’s interfering with daily life, that’s really the driving factor to decide to start medication.

Polly Dawkins:

And sort of a complimentary question. Some folks have said that they’ve heard that taking medication too early means that the meds will lose their effectiveness. Is that true? Or can you describe that issue?

Aaron Haug:

Yeah, let me speak to that. So, this is, I would say a common misperception, a common myth that’s out there that medications, quote unquote, only work for five years or something like this. And I think two things are true. One is that the biggest factor in how well your medicines work is how long you’ve had Parkinson’s, how advanced your disease is. And so, it’s true that medicines work best. They kind of have the smallest hill to climb in the early years of the disease. But that, because we can’t control how many years a person has had Parkinson’s, it’s not necessarily a reason to save it for a rainy day, so to speak because suffering through untreated Parkinson’s symptoms for a few years can put you behind the eight ball in some ways with greater difficulty engaging in an exercise regimen and things like Dr. K was discussing the importance of.

The other thing that’s true at the same time is that there are some medications that the more years that you’re on them, the more complications can develop. And the medication induced complications are mainly two things, motor fluctuations, where the medicine works and wears off multiple times per day and medication induced dyskinesias. These are instead of the rhythmic tremor movement, more of an involuntary wiggling or fidgeting type of movement. And so, people that are diagnosed at a younger age might choose one medicine versus another to try to mitigate some of that risk of medication induced complications, but in terms of when to start medications at all, it’s generally as soon as the symptoms are bothersome and this idea that medications stop working is not the case. Medications work for a person’s whole life with Parkinson’s, but the regimen may get more complicated as the years go by.

Polly Dawkins:

Got it. So how about we set the stage as well for folks about what the different types of medications that treat Parkinson’s are and a bit of a primer for folks. And because I have read the Every Victory CountsÒ Manual many times, and your contributions to that I’m aware of maybe seven different categories or types of medications that work with Parkinson’s. Is that about right?

Aaron Haug:

Yep. Seven categories.

Polly Dawkins:

So would you go through those, we’ve got some slides for folks to provide a visual background, would you go through each type of medication, how it helps reduce motor symptoms, again, today we’re focusing on the motor and what the potential side effects are?

Aaron Haug:

Sure. So, here’s the bird’s eye view. These are the seven categories of medications and there’s a follow up slide about each of them. I think that there’s a lot to take in here obviously. I think that to simplify it, there are just a few of these medications that are used the vast majority of the time. There’s also a little asterisk in the lower right-hand corner that says anything with an asterisk by it is the brand name only medication, which can sometimes create some issues around cost. But these are the categories. And so, I think, should I just kind of get into each one at this point, Polly? Okay.

Polly Dawkins:

That would be helpful.

Aaron Haug:

So, levodopa, carbidopa levodopa. This is the gold standard medication for the motor symptoms of Parkinson’s. So, the carbidopa is there just as a transporter and the levodopa is there because it’s a small enough molecule to cross from the bloodstream into the central nervous system. And it gets turned into dopamine, low dopamine as we know is the main problem in Parkinson’s. And so, this is like putting gas in the tank. You’re putting more dopamine back into the nervous system where it’s needed. People ask, well, can we just make a dopamine pill? And that’s basically what this is. Dopamine in a pill wouldn’t be able to get into the brain, but levodopa can. And so, the reason this is considered the gold standard for most people with Parkinson’s, this is the medicine that has the greatest benefit for the physical motor symptoms, the tremor, if you have it, as well as the stiffness and slowness. What about possible side effects?

These are going to be kind of effects, negative effects that we can see potentially with any medication, nausea and lightheadedness are near the top of the long list of possible side effects with most any Parkinson’s medicine. And nausea is maybe a little bit more likely with L dopa than it is with some of the other medications. But these are usually manageable by either discussing the timing of the medication relative to food. Maybe using a slow-release formulation instead of an immediate release formulation. So, the side effects are usually something that we can work around, but this is kind of the cornerstone for most people’s treatment regimen for bothersome motor symptoms is levodopa.

Polly Dawkins:

Great. May I ask a couple of questions from the audience about this specific treatment?

Aaron Haug:

Please.

Polly Dawkins:

So somebody is asking what’s the difference between CR or controlled release and ER, extended release, if I’ve got those right, levodopa?

Aaron Haug:

There is no difference. This is just a terminology confusion. Some pharmacies call it controlled release, some pharmacies call it extended release, they are one in the same. There is one other difference which is extended release or controlled release capsules. And this is the brand name medication Rytary. But if we’re talking about regular carbidopa levodopa, we’ll sometimes call it the regular, usually yellow pills, immediate release IR, and then the other pills, which come in a few different colors and are either 25/100 or 50/200 milligrams. We call those kind of interchangeably CR and ER, so the language is just a little sloppy there.

Polly Dawkins:

And is that the same thing as slow-release levodopa?

Aaron Haug:

That would be a third thing that you could call the same thing.

Polly Dawkins:

Got it. So could you answer the question that somebody has about what is the benefit of slow release or ER or CR levodopa for some people? Why is that better for some people?

Aaron Haug:

For me, I find the main benefit to be tolerability because it kind of hits your system a little more gradually if there is nausea or lightheadedness, those side effects are often less with the CR, ER, slow-release formulations. There’s theoretically, what it sounds like, a controlled release of the medication that maybe could prolong the amount of time that the medication works for you. If a person is having motor fluctuations and their medicine only lasts five hours when they’re taking regular carbidopa levodopa, theoretically the extended release might extend that ON time to six hours. Unfortunately, it often doesn’t pan out that way because the extended release sometimes has more variable absorption and some people find it overall less effective. And so, the main place that I find myself using it is either at night where it may kind of help a person get through to the next morning or during the day, if there are tolerability issues with the immediate release.

Polly Dawkins:

Ah, helpful. That’s helpful. Tim in the audience asks, are there issues with only taking levodopa when you need it? And he mentions that he takes it in the morning and the afternoon when he is working, but he doesn’t take it at night when he doesn’t need it.

Aaron Haug:

Yeah. This is an interesting question. And it’s an area that we have more hypotheses than we do evidence. A person without Parkinson’s, their brain is releasing dopamine continuously, not two or three times a day. And so, the reason that most of us want our patients to take their medicine at least three times a day is to more closely replicate the biological pattern where the dopamine’s there in a more continuous fashion. There’s a theoretical concern that just taking the medicine once or twice a day, might by giving these large amounts of dopamine and then none for a while that it could potentially shorten the time horizon to when motor complications occur. But this is something that is more kind of hypothetical and anecdotal rather than something we have a lot of evidence to guide us on.

Polly Dawkins:

Got it. All right. Thank you for taking those questions in the middle of your slides. Let’s jump into the next. So, we’ve talked about carbidopa levodopa…

Aaron Haug:

Yeah. So, the next, the second category of medicines to talk about is the second most effective category. So, these are the dopamine agonists. So, these are medications that are kind of like a synthetic dopamine. The most common of these are pramipexole, also known as Mirapex, ropinirole, also known as Requip and the Neupro patch, which is just available as the brand name. So, this is the second most effective category. The second most effective for tremor and stiffness and slowness. There are certain pros and cons or advantages and disadvantages of this family of medication. I alluded to the fact that some medicines are less likely than levodopa to cause motor fluctuations and dyskinesias over the course of time. And so, if I’m seeing a patient’s maybe in their forties or fifties and they have pretty bothersome motor symptoms, we would talk about maybe starting a dopamine agonist rather than L dopa as our first line treatment, because less likely three, four years into treatment that they’ll have those complications, including dyskinesias.

So that’s the point that I made there. What are the disadvantages? It’s mainly in terms of side effects, so young people who I just said might be more likely to benefit from the motor effects of dopamine agonists are also at somewhat greater risk of suffering this category of side effects that are the impulse control disorders. So, this is difficulty controlling impulses to do any of the things that humans normally are drawn to doing, eating, shopping, gambling, sex. And so, if any of those impulses are becoming kind of overwhelming, we call that an impulse control disorder and the family of medicines, the dopamine agonists are more culprit of causing those side effects than any of the other categories are really. Impulse control disorders are listed as a possible side effect on most every Parkinson’s medicine, but it’s in the dopamine agonist category that we think about it the most.

Polly Dawkins:

Do you find that there are individuals who are more likely to experience impulse control disorders?

Aaron Haug:

So, we know that it’s more likely among younger patients and it’s more likely among men.

Polly Dawkins:

Got it. Okay. Thank you.

Aaron Haug:

So, there are a couple of other idiosyncratic side effects that can occur to patients younger or older taking dopamine agonists. And these include sudden sleepiness or so-called sleep attacks. Again, this is listed on most every Parkinson’s medicine as a possible side effect, but it’s something that’s seen frequently among the dopamine agonists and then also sometimes edema or leg swelling. And these are things that are more likely as you get to higher doses of the medicine but can occur kind of unpredictably. So, the dopamine agonists came around about 25 years ago and the pendulum really swung heavily towards them for a time and a lot of neurologists were using them instead of L dopa, at least in my practice over the last 10 years, and in the case of, I think a lot of movement disorder specialists, I think more and more of us are using L dopa, not to the total exclusion of dopamine agonists, but probably at a significantly higher frequency than the dopamine agonist because of some of these side effects that have become more apparent as the medicines have, you know, gained decades of use.

Polly Dawkins:

Super, all right, what’s the third category?

Aaron Haug:

So, the thing I’m mentioning third here is the family called MAO-B inhibitors. So, MAO is a brain enzyme that we all have, and there’s an A type and a B type. And these MAO-B inhibitors slow down and inhibit this B type of the enzyme. So, the enzyme’s normal job is to recycle dopamine. And so, if we slow down the breakdown, if we use these MAO-B inhibitors, then your brain ends up with more dopamine. So, the medicines in this family are selegiline, rasagiline, which the old brand name was Azilect. And Zadago. So, all of these medicines increase dopamine. This family tends to be kind of mild and tolerable. So, the mildness is in terms of a mild benefit. I will sometimes estimate that if a L dopa regimen is 10 out of 10 effectiveness, it’s the most effective medicine we have, that the MAO-B inhibitors are maybe somewhere around a four.

So, the benefit for tremor, stiffness, and slowness can still occur, but it’s not as robust and remarkable as it can be with L dopa and the dopamine agonist. Because it’s mild benefit and well tolerated, it’s often used alone in people that are early in their course with Parkinson’s. If someone has started on something else first, L dopa or a dopamine agonist, an MAO-B inhibitor may be added as the second or third medicine to try to smooth out fluctuations by prolonging and improving ON time that is achieved by any of the other kind of cornerstone medications that a person is using. I will mention also that there’s a theoretical benefit with rasagiline that came closer than any other medicine did to showing that maybe there’s a disease modifying effect. That was not conclusive. And unfortunately, we don’t have any medicine that’s conclusively disease modifying, but the rasagiline kind of came close to showing that it might be.

Aaron Haug:

And so, if it can also be of mild benefit and most people tolerate it well, then for that possible disease modifying effect, it’s something that we’ll sometimes add in early for that reason. So, if you look at the side effects of selegiline or rasagiline and the side effects of L dopa and the dopamine agonist, it’s almost the exact same list, but again, it’s an issue of how likely are those side effects. And with most of the MAO-B inhibitors, the side effects are pretty unlikely. So selegiline, or maybe even more so rasagiline along with L dopa, those are about the only two medicines I’ll use for people in their eighties, for example, because of the good tolerability.

Polly Dawkins:

Great. The questions just come in. If we could answer this one before we move on about dopamine agonist side effects. If somebody’s gonna have a side effect from a dopamine agonist, will that show up early or is there a possibility that somebody could develop the side effect after like the sleepiness or the impulse control disorder after taking them for a while?

Aaron Haug:

Yeah, a couple things to say about that. One is that I wouldn’t expect those side effects to occur right off the bat. There’s something that, you know, when they occur, it seems to be after six months, after a year, a year and a half, and maybe that’s because the dose has been gradually increased to better treat the symptoms. But some of these can be later and unpredictable. So, a person who’s been on a stable dose of medicine could potentially develop, whether it’s the impulse control disorders or the edema, or the sudden sleepiness, it could happen years into taking the medicine. The other thing that happens is that people are getting older, the more years that they’ve been on the medicine. So, while I’m pretty comfortable using dopamine agonist for people in their sixties, by the time people get into their seventies, the sleepiness in particular is maybe more likely just because people start to lose some of the functional reserve as they get older. So those are the two things to consider when thinking about when might those side effects occur.

Polly Dawkins:

Great. All right. Let’s put your slide back up about fluctuations, I think it’s a great visual to help us get grounded in some of these some of the questions that are about wearing off.

Aaron Haug:

Yeah. So, what we’re looking at here is a typical day. And at the left-hand side of the screen, a person is waking up. They maybe haven’t taken medicine since the night before. And so maybe they feel off, they feel stiff and slow and maybe shaky. And then there’s the arrow that shows where a person is taking their medicine. And then we start to go up the curve, the symptoms start to be alleviated. A person feels more ON, and then later the symptoms begin to return. We call that a wearing OFF period. There are a couple of medications that have been approved recently, specifically for the treatment of OFF periods. And so, people have seen ads or commercials for some of these medicines and they come in and they say, am I having OFF periods? And the answer to that question is almost always, no, usually people that are having OFF periods know it because they say, oh yeah, four hours and 45 minutes after I take my carbidopa levodopa, I start to feel worse like I need another dose.

And so, if you’re wondering whether you have OFF periods, then it’s quite likely that you do not, and that’s good. Those may develop as the disease advances and that’s a bridge we can cross down the road. But if a person is wearing OFF and feeling that their medicine stops working, or isn’t working as well after eight hours or after six hours or after three hours, then that’s where we can start to use some of these multi medication strategies where it may not just be a matter of increasing the dose of one medicine, but maybe dosing that medicine more often, or using some sort of booster medication to try to prolong and improve the periods of ON time.

Polly Dawkins:

Great. All right let’s move to the fourth category.

Aaron Haug:

So, the COMT inhibitors are a booster. So, the MAO-B inhibitors that I mentioned just a minute ago could also be considered a booster but can also be used by themselves. But the COMT inhibitors are different. COMT is a different enzyme and what it does is recycle levodopa. And so, this is a medicine that is only ever used in combination with levodopa. And so, there’s three mentioned here, entacapone, formally known as Comtan and then tolcapone and Ongentys is a newer one. And so, by slowing down the breakdown of L dopa, you can extend and improve your ON time from each dose of L dopa. As I kind of alluded to just now COMT inhibitors are only used in combination with carbidopa levodopa. If a person with Parkinson’s takes entacapone by itself, it doesn’t do anything because it’s only there to improve the effect of the L dopa. Entacapone is the most widely used of these Comptan was the old brand name it’s available as a separate pill.

It’s usually kind of an orange oval, or it’s also available in combination as a single pill, carbidopa levodopa entacapone, which comes in five or six different strengths, which can be nice to make adjustments. A couple of side effects to be aware of with entacapone as a COMT inhibitor. I mentioned that most of the medicines have the same list of side effects, but entacapone has one special side effect, which is maybe about 5% of people get diarrhea from it, from causing kind of an immune reaction in the gut. It’s not dangerous. And I have a couple of patients that use this strategically to treat their bothersome constipation. But if diarrhea is bothersome and it coincides with when you start entacapone, the medicine may have to be stopped. The pills are orange, as I mentioned, and they will stain things. So be careful if you’re like leaving it on your counter, and it will also turn some of your bodily fluids kind of an orangey color. So, if you’re urine turns orange, it doesn’t mean you’re dehydrated. It’s just a side effect of the medicine and it’s not worrisome.

Polly Dawkins:

So now, I’m gonna quiz you, Aaron, how do you pronounce the long word that’s COMT.

Aaron Haug:

Oh, the enzyme?

Polly Dawkins:

Yeah.

Aaron Haug:

Catechol-O-methyltransferase is the whole name.

Polly Dawkins:

Very nice. I can see why we say comt, C-O-M-T. Alrighty. Let me just check our chat really quickly and see if there are any questions about COMT inhibitors. I don’t see any right now, so let’s move on to the next category.

Aaron Haug:

So, the adenine receptor antagonist, this is a new category. There’s only one medicine in it. It’s called Nourianz. It’s only available as the brand name and this works on kind of a side pathway, adenosine and dopamine are kind of in balance with each other. And by blocking adenosine, you’re kind of relatively getting more dopamine function. So, we think that’s how it works is by increasing dopamine signaling. Currently, this medication is approved only as an add-on, a booster to levodopa, although unlike the COMT inhibitors, which even theoretically can’t possibly help without levodopa, Nourianz theoretically could. And so there may be a day where Nourianz can be taken as a standalone medication as well.

Polly Dawkins:

Are there any side effects to this medication?

Aaron Haug:

So, same list of possible side effects. Interestingly, one of the selling points of this category of medicine is that maybe it’s less likely to cause dyskinesias than just increasing your levodopa would be, but at the same time, dyskinesias is listed as the most common possible side effect. We think that the adenosine pathway is maybe a little bit more involved in tremor. And so, if someone has tried a couple of other medicines for tremor, this is something that we potentially could try to treat tremor that has remained bothersome despite some other attempts.

Polly Dawkins:

All right. Okay. Thank you. Next one.

Aaron Haug:

So, amantadine is a special medication. It’s been around for a long time. It’s a fairly powerful medicine for the motor symptoms of Parkinson’s and it also has a special role to play, which is that it’s the only medicine that you can take more of and get less dyskinesias. It’s the only medicine we know of, that’s an effective therapeutic tool for dyskinesias. So that sounds well and good. Some people will start this maybe even as their first medication or added in somewhere along the way. But kind of, like I mentioned with the dopamine agonist, as people get older, some side effects become more likely and so dry eyes, dry mouth worsening, or causing constipation, or even causing hallucinations are more common with amantadine. So, I find it a lot more helpful when people are in their fifties and early sixties, I start to use it not very often by the time people are in their seventies and eighties.

Polly Dawkins:

Isn’t there a longer release amantadine available?

Aaron Haug:

So yes, I’m referring here to kind of generic amantadine. There are two brand name only formulations of amantadine that only need to be taken once a day, instead of maybe twice a day, like the amantadine, these are called Osmolex and Gocovri. And it’s nice to not have to take medicine quite as often. That’s kind of one of the advantages of those. But because they’re available only as a brand name, I tend to use the more inexpensive amantadine.

Polly Dawkins:

Got it. Okay. And is there one last category?

Aaron Haug:

The last category, the anticholinergics. So, these medicines like trihexyphenidyl and benztropine only work on tremor. They don’t help stiffness. They don’t help slowness. But if someone has a lot of tremor, and is fairly young again, then this is a category that we might use. So those same side effects that I just mentioned about amantadine we actually call those anticholinergic side effects, dry eyes, dry mouth, constipation, hallucinations. And so, this family of medications is called anticholinergics. So expectedly, the anticholinergic side effects are potentially an issue here, but for bothersome tremor and a younger person, it’s a medicine that we’ll sometimes think about. So those are the seven categories and they kind of each got an equal amount of face time here. But I think you can maybe, or I’ll emphasize that levodopa for most people is kind of the cornerstone of the foundation. And then maybe we increase it a little bit, or we take it more times a day and maybe we buttress it with an MAO-B inhibitor, like rasagiline or buttress it with a COMT inhibitor like entacapone. And if someone’s developing dyskinesias, we may be add in some amantadine, but for most people, levodopa is at the heart of it.

Polly Dawkins:

Somebody in the question we have about, seven minutes left together and so many questions. And so, I’d like to try to get through some of those, if you’re willing?

Aaron Haug:

Absolutely.

Polly Dawkins:

Somebody has asked if there is a future technology that would be implanted where it could understand, whatever the technology would be, could understand how much dopamine you have and how much you need and release it accordingly. Do you know of anything like that coming down the pipe?

Aaron Haug:

Yeah, that’s a great question. For medicine, I think the answer is no. There are devices for continuous delivery systems of levodopa. There’s the Duopa pump, which involves a small surgically inserted tube, but it’s an open system. You just program it to deliver however much, it’s not detecting how much you need. And in the next year or two, there may be subcutaneous delivery systems of either a dopamine agonist or levodopa that are also come available. In the deep brain stimulation space, potentially in the next few years, there may be a closed loop system where the DBS device can detect what’s going on in your brain and can increase your stimulation as needed. So that’s something that we may be seeing in the coming few years.

Polly Dawkins:

Super. And I think I’ve heard about a subcutaneous continuous that’s not a surgery for delivery of levodopa.

Aaron Haug:

Yeah, that’s right. So possibly in the next year or two, that may be a reality.

Polly Dawkins:

Super. Somebody has asked about some of the rescue meds and all. I think we’re gonna leave those, like Inbrija, we’re gonna leave those for the conversation that’s coming up about OFF. So, for those of you who are hoping to hear about that, we’ll come back to that. One question that we get quite a bit, and I’m sure you do as well is about a slow emptying colon. And how do I’m sorry, I’m losing my track here. How can we take medication when the colon isn’t emptying? Do you have strategies or thoughts about the slow gut and slow emptying?

Aaron Haug:

Yeah, so constipation is a highly prevalent condition among people with Parkinson’s as most of us know, and for some people it’s their most bothersome symptom. And so, some people have slow gastric motility, and unfortunately there’s not directly a way for us to treat that exactly because the main medicine that’s used for that called metoclopramide or Reglan can make the symptoms of Parkinson’s worse. So probably the best we can do is try to not be constipated, try to have a bowel movement every day. And by keeping the gut moving, because levodopa is absorbed in the first part of the small intestine, if the colon’s cleared out every day and you’re able to keep things moving, then that will improve the efficacy of the medications. In that same note, taking each dose of, especially carbidopa levodopa, with a full eight ounces of water to kind of wash it through the stomach on into the small intestine where it’s absorbed is a good idea.

Polly Dawkins:

You’ve done some work with us on constipation, which we can share with everybody. In a really readers digest format, what do you recommend for your patients who are experiencing trouble, some constipation, to sort of keep regular so that their meds work better, water, you said?

Aaron Haug:

Yeah. So, lifestyle management is first, plenty of fluids, exercise, dietary fiber. If we’re doing all those things, then over the counter medications can be quite effective. If the bowel movements are hard, then docusate also known as Colase is a stool softener, and that’s sometimes enough by itself, but usually people will need a laxative as well. And a so-called osmotic laxative like Miralax, polyethylene glycol can be safely taken every day and can be quite helpful. So, it’s the mush and the push strategy with a stool softener and a laxative that some people need.

Polly Dawkins:

That you take one thing away from this today, the mush with the push.

Aaron Haug:

Memorable.

Polly Dawkins:

Memorable. Yes. We do need little memory help here. Alright. So many questions. Is there a problem with taking half the prescribed dose twice as often? And I don’t know what this person was referring to, which medication, but I’ll probably assume levodopa.

Aaron Haug:

I would assume so too. So, there’s not a problem with it, except logistics. It’s just hard to do, to remember, to take a half tablet six times a day, instead of one tablet, three times a day. It may be a little better to fractionate it in that way to take less, more often, because it’s a step closer to what our basal ganglia normally do where they’re kind of putting out the dopamine on demand continuously throughout the day. But at the same time, life is hard enough. I’m not gonna try to make anybody take their medicine six times a day, especially right out of the gate. But if someone’s having bothersome dyskinesias or motor fluctuations, then a strategy of fractionation where you take less, but more often, is something that we’ll often try.

Polly Dawkins:

I can imagine that gets complicated with eating as you’re supposed to have a fairly empty gut when you or empty stomach, when you take your meds.

Aaron Haug:

Yeah. So, the empty stomach issue. So, levodopa, we have always said works better on an empty stomach. Some people say 30 minutes before a meal, some people say an hour after a meal. Some people say, wait at least an hour. Some people say two hours. If you’re taking medicine six times a day, there’s not enough hours in the day. It tends to be the case that for a lot of people, the med timing separate from meals is maybe not so critical, but it’s more the people that are having a lot of fluctuations where separation from meals, especially separation from protein is important. So, it does create kind of a logistical conundrum.

Polly Dawkins:

Yeah. I can imagine. Oh, my goodness. So many things to think about so many questions out there. We so appreciate you here and the work that you’re doing in our community, it shows how much passion you have for this work. Thank you.

Aaron Haug:

Thank you for having me happy to be here.

To download the audio, click here. 

To download Dr. Haug’s presentation slides, click here.

movement break: boxing for parkinson’s

Read the transcript below or  click here to download.

Lori DePorter (Personal Trainer, Rock Steady Boxing Coach):

Hi, my name is Lori DePorter. This is Valerie Kerchner. We’re here for your 15-minute break. We’re gonna show you some boxing, some big movements, and a little bit of balance. So here we go. Let’s get started.

Valerie Kerchner (Personal Trainer):

We’re gonna start with some big movements. So please if you are comfortable sitting, sit, otherwise stand. We’re gonna just start with tapping our knees and reaching up and out as far as you can. We’re gonna go a little quicker now. Ready? Just take it up. Nice. You just wanna make sure that you are making as big as you possibly can. If you want your hands to go low, you can. If you wanna go up, you can. Just a few more here. Okay. Very nice and relax. The next movement. We’re gonna take it to the side. It’s called a rock. So, you’re going to shift the movement from one leg to the other, sitting down, you rock two. Lori, you wanna explain anything on that?

Lori DePorter:

You open up your hands real wide, make big bees in those fingers. If you’re sitting in the chair, you’re shifting your weight from one leg to the other.

Valerie Kerchner:

One more, maybe you wanna add, and you wanna look towards the direction of your hand. Okay. And relax. We’re gonna take it to the other side now. So put all the weight on this side and reach to the other. Again, you can go on your tippy toes of the back foot as you turn to make it as big as you can.

Lori DePorter:

Also look around the room and say a color that you see. I see red. What do you see Valerie?

Valerie Kerchner:

I see green. I see blue.

Lori DePorter:

Good job.

Valerie Kerchner:

Do one more. Very nice. Okay. Now sitting down or standing up, we’re going to take a big step and you’re gonna step out and you’re gonna push off your foot.

Lori DePorter:

I went to the wrong side.

Valerie Kerchner:

Step out, push back.

Lori DePorter:

If you’re in the chair. It’s up over, down, up, over, back. Just like you’re getting in and out of your car or your bathtub.

Valerie Kerchner:

Or you’re stepping over something. We do these movements all the time, so it’s good to practice them. Give me three more and relax. Okay. We’re gonna shift the other side, ready? And when you’re ready, take it out.

Lori DePorter:

Only go as far as you’re comfortable.

Valerie Kerchner:

I like that Lori.

Lori DePorter:

Up, over, down, up, over, back.

Valerie Kerchner:

You need to push yourself back, right? So, you gotta make sure that you can do that.

Lori DePorter:

Or if you need to hang onto the counter or your desk or your back of your chair, that’s fine. We just want you to be safe.

Valerie Kerchner:

Give me one more. Very good. Relax. Would you like to do one more Lori or you wanna start with the boxing?

Lori DePorter:

Let’s start boxing.

Valerie Kerchner:

Okay. Well, I’m gonna have a seat and she’s gonna stand up. You can do this standing or seated.

Lori DePorter:

All right. You’re gonna do a boxer stance, your split stance. If you’re right-handed, your right leg is back. You’re gonna bring up your hands to a guard position. We’re gonna just do a jab and a cross for this segment. The jab is all the way in all the way out on your front foot. Come back and cross on your back foot. That’s your power punch. So, you’re saying hello, goodbye, and bring it in. So hello, goodbye, and bring it in. Right, let’s go a little faster. Hello, goodbye and in. Hello, goodbye and in. Think of it as your Parkinson’s. Hello,  goodbye, knock it out.

Valerie Kerchner:

And you know what else Lori? They could be tall or short, whoever you’re hello-ing and goodbye-ing right? You can go down.

Lori DePorter:

You can say body head. If you’re short like me, really reach. One more. Relax, boxer shuffle. All right, we do that a little bit faster, then we’re gonna just do it, just do it a little bit faster. Alright ready? Go. No hole, no hold, no hole.

3, 2, 1, bring it in, boxer shuffle, but you’re going to switch sides. Alright, so now your dominant leg is forward. You’re still gonna jab cross. So, jab and cross. Remember to turn your hips to the front when you cross. Alright, let’s bring it in now. Hello, goodbye. Bring it in. Hello, goodbye and in. Hello, goodbye and in. Hello, goodbye and in. One more. Hello, goodbye, and in. Okay. We do one there’s a little bit of speed. Ready? Go. 3, 2, 1, relax.

Bring it forward. Let’s do a little march and shake those out. All right. If you’re in a chair, you’re gonna march your knees. If you’re standing again, and you would like to turn, you can turn. So, 1, 2… 3, 2, 1, and turn. This time, add your hands to it. I want you to take your hands and then go in and out. 3, 2, 1, and forward. Turn to the other side. 3, 2, 1. This time, make your hands go up in the air. You’re doing multiple movements. It’s not easy. 3, 2, 1 back center. Okay. We’re gonna do one of my favorite things that I do in class. Okay. You’re gonna get a boxer stance and you’re gonna punch high and you’re gonna go across your body punch high. And do me a favor. Since you don’t have gloves on, start with a closed fist and then flick your hands open at the top. Shift in your weight. This incorporates almost everything we’ve done. 3, 2, 1, bring it in. March.

Valerie Kerchner:

I wanna emphasize that when you’re in the chair doing that, you wanna try and lift those hips. Don’t be just still you don’t have glue on the rear end.

Lori DePorter:

Alright, so, we’re doing the same thing, but this time we’re going straight out, but we’re twisting our bodies. So, we get a little twists in there. Ready? Go. One side and then the other, use your whole torso. Add that flick.

Valerie Kerchner:

And look how we’re lifting our feet.

Lori DePorter:

Yep. Your feet are not glued to the ground.

Valerie Kerchner:

Neither is our butt.

Lori DePorter:

Your butt cheeks are not glued to that chair. 3, 2, 1. March. Where do you think we’re going next? Ready. Go. Low. Shifting that weight, but keeping that chest up, pushing that torso. 3, 2, and 1, bring it back in. March. All right. So, we are gonna add, we’re gonna do something called speed bag and a little bit of balance together. So, you’re gonna take a step out on the diagonal. You’re gonna lift up your back heel. If you’re in the chair, go up on one toe, take your hands and you’re gonna go over under, far enough away from your face that you don’t hit yourself in the face. That would not make for a good break. All right. Make a circle. Look around the room. Say things that you see. I see my boxing bag back there. One more. Bring it right in front of your, right in front of you. Ramp your engines. You’re gonna go as fast as you can. Counting back from eight. Ready, go. 8, 7, 6, 5, 4, 3, 2, 1. Relax, push off and bring it back in. Take a deep breath. And now we’re gonna step out to the other side. This time you’re reversing your arms. So, it’s reverse. And here now let’s make a big circle, but your circle’s going in reverse as well.

I hope you guys are enjoying the summit so far. They’ve been great. Bring it in front of your face. Grab your engines and go. Count for me. 8, 7, 6, 5, louder, 4, 3, 2, and one. Bring it in. Relax. Take a deep breath. Let’s do a little diaphragm breathing. So put one hand on your heart. One hand on your belly. Take a big deep breath until you feel your belly rumble, blow it out. Two more. One more. It’s really important that we keep our lung capacity, because we don’t want pneumonia. None of that. All right, so we’re gonna do some stretches here. So out to the side, the one arm across and give yourself a great big hug. Pat yourself on the back, stretch these shoulders before we do the little bit of balance, other side out, all right, relax. Shake those out. Put all your weight on one side. Bring your guard up like we did before unless you have to hold onto something and squeeze those hands. I want you just tap forward. Bring it in and tap to the side. Bring it in. You have to do everything in threes. That’s what I’ve heard. Or you get bad juju and you don’t want bad Juju. That’s our third one.

I gotta switch sides. So forward, in, side and in. Ah, then back. Forward in, side in, one more, forward in, side in. I apologize for the bloopers. It happens. Okay. So, everybody take a big deep breath, up over your heads, blow it out. One more. Third one, relax. Hope you enjoy the rest of the day and the rest of the summit. And you learn a lot. May your thoughts and your words be in line with your heart. Have a great day.

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managing motor symptoms during off times

Read the transcript below or click here to download.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

Hello everyone. And welcome.

Yasar Torres-Yaghi, MD (Physician, Medstar Georgetown University Hospital):

Hi.

Amanda Craig, OTR/L, CBIS (Occupational Therapist and Owner, Ada Therapy Services, PLLC):

Hi.

Polly Dawkins:

I am glad that the three of you have raised your hand to say yes, you would join us to talk about managing motor symptoms from your different perspectives during OFF times. I’ll do a really quick intro, ask you how you would like me to refer to you during this, and then we’ll get started. So, Dr. Yasar Torres-Yaghi, that’s a big mouthful. How would you like me to refer to you in this session today?

Yasar Torres-Yaghi:

My mother gave me eight names, so the there’s like five more, but no, you can call me anything, Yasar, Torres-Yaghi or Dr. Yaghi or Yasar, whichever you prefer.

Polly Dawkins:

Okay. Thank you. Thank you for that. And you’re a fellowship trained movement disorder specialist with a subspecialty in neurorestoration research in movement disorders and dementia. What is neurorestoration research?

Yasar Torres-Yaghi:

Wonderful. So, it’s 34 years including preschool to finally make it. And once you’re there, so I did a special kind of very research focused two year fellowship beyond neurology, so movement disorders and neurodegenerative fellowship, where we did clinical research, utilizing therapeutics to help disease modify or slow progression of disease and the therapeutics that do that help us restore neuronal function so that we don’t lose neuronal function. That’s called neurorestoration.

Polly Dawkins:

Thank you for that. That’s helpful. And our friend, Joe Van Koeverden, if I’ve pronounced that correctly.

Joe Koeverden (Ambassador, Davis Phinney Foundation):

Yeah. And just call me, Joe.

Polly Dawkins:

All right. I’ll call you Joe. And you were diagnosed with Parkinson’s in March of 2012. So, 10 years you’ve been living with Parkinson’s and he’s incredibly active in Canada helping spread the message that it is possible to live well with Parkinson’s and thank you for being here today and Amanda Craig. Amanda, great to see you again. Amanda has joined us before. She’s an occupational therapist, a licensed occupational therapist and a brain injury specialist. And you work in the growing town of Boise, Idaho.

Amanda Craig:

Uh-huh. Yeah, I do.

Polly Dawkins:

So many people are moving to Boise.

Amanda Craig:

Yeah. It’s yeah. It’s pretty crazy. Yeah. We’re fortunate enough to have been here for long enough that we have a place to live. Yeah. And thank you so much for having me today.

Polly Dawkins:

Yeah. Well, we’ve asked the three of you to join us, to talk a bit about strategies to manage OFF. And so, I’m gonna go with Dr. Yaghi because I like that way to refer to you and it’s easy and I might not mispronounce it. Can you start the session off with helping us understand what is OFF and are there different types of OFF?

Yasar Torres-Yaghi:

You got it. I think the first step in, in, in terms of making something better is identifying the problem, right? So, it’s always solution driven investigations within our practice. So, we sit down with a patient, we may spend half an hour, sometimes an hour just to put on our investigator hat and kind of figure out exactly what’s going wrong and it’s not easy. You see from the polling question, you know, the responses vary. Interestingly, a quarter of the patients in the polls do feel a negatively impactful effect from their OFF time on a daily basis. So that speaks volumes as to how important it is to have this discussion. Detecting OFF is not as easy as it sounds. Right. So first of all, the concept itself is a little hard to understand, right? So, you may say OFF, what is OFF, you know, is OFF ON or is ON OFF, does OFF mean your Parkinson’s is OFF or does that OFF mean your medicines is OFF?

So, number one, get on the same page as your patient. Number one, right. Is OFF meaning your Parkinson’s is OFF or is OFF the medications is OFF. That’s very important. Another way of thinking about it to peel back that conceptual layer is saying a return of symptoms. So, when in between your carbidopa levodopa regimen that we take multiple times a day, sometimes 3, 4, 5, 6, 7, 8 times a day, possibly, depending on where we are in the disease process, in between those doses, do you feel a return of symptoms due to the wearing OFF of medicines? Now, could it happen in the morning before you take your next dose? You betcha, that’s called OFF, morning OFF, or morning akinesia. What if a patient says, I take my carbidopa levodopa and I feel worse for about an hour, and you say, what? The medicine’s supposed to make you feel better?

And they say, nope, I feel worse. And you say, okay, well, and your investigator hat comes on. You’re no longer a doctor. You’re an investigator. You’re no longer an occupational therapist. You’re no longer a wonderful representative of the Davis Phinney Foundation that understands OFF, so you put on your investigator hat and you say, wait, hold on a second. Are you having a side effect from the medicine? Is your blood pressure dropping when you take your medicine? Like, are you experiencing orthostatic hypotension? Is that what you mean? Or is it that you’re having a delay to ON which is possible. Because remember after you swallow a pill, there’s still time where the previous dose is coming down. So, you may not get to the bottom of that valley even after taking your medicine, you take your medicine, it could take another 60 minutes to come back up.

So, a delay in ON is also an OFF episode. Okay? So, then there’s the end of dose wearing off. Then there’s unpredictable wearing OFF. There’s something called misdose effect. I take my medicine and it never kicked in to begin with and then wearing OFF can happen even at night. So, remember OFF is a major problem in our world. So sometimes we may feel like we don’t actually experience OFF, but the symptoms you have in the middle of the night at 3:00 AM, when it’s hard to move in bed and turn, or you might feel a little cramping that could be an OFF episode. So, detecting OFF is so, so, so important.

Polly Dawkins:

Wow. Joe, do you experience OFF and how do you experience OFF?

Joe Koeverden:

Oh, for sure. And I think he hit it a few times there and I normally experience OFF when I’m not following my schedule for meals and sleep and all those things, it’s usually my own fault. Because sometimes I just wanna squeeze in that lunch, even though I’m within an hour of taking my medication. But the one thing I really liked is the explanation. It was very clear. I like to make sure I’m looking at the OFF, and not any other odd feelings I may have. I have two other odd feelings I talk about which one is feeling down, you know, apathy is a bad thing with Parkinson’s. So, when we just may be feeling down, we don’t want to start treating feeling down with our Parkinson’s medication. The other thing is if we, if we’re feeling done and when you’re feeling done it’s that you’re just tired. Right? I know yesterday we went to Toronto to do a few things and came back at the end of the day and I was done. In fact, I was still done this morning. So, you know, you wanna make sure you are like, the doctor said that you’re treating an OFF time and not any of the other feelings cause the extra medication won’t help the other two.

Polly Dawkins:

Yeah. Do you have a plan for action or a strategy that you use for being OFF or for minimizing it altogether?

Joe Koeverden:

Well, I think the morning time OFF is the hardest one to deal with. So, I like to go down to the basement and do some speed bag punching, do a little boxing, first thing in the morning that gets your body going and any levodopa around will find this way to your brain.

Polly Dawkins:

Got it. And Amanda, what is your recommendation or your experience working with people with Parkinson’s who have OFF times and strategies that you use or recommend for those individuals?

Amanda Craig:

Well, something that Joe touched on is that feeling of being down, that apathy, maybe decreased motivation, maybe there’s other things going on. So, you know, one of the big impacts of OFF times that we see with clients too, is that maybe they’re OFF, you know, having those motor symptoms and their medications not ramped up yet. But the impact of stress is something that’s really what we notice. I mean, just even in our sessions when people are even just thinking about a stressful event or they’re currently experiencing an acute stressful event in their life, we see an increase in those involuntary movements. We see an increase in tremors, language challenges, thinking problems. So, one ideal strategy for people with Parkinson’s is to develop a strong foundation of stress reduction, or stress coping skills. Like Joe mentioned, you know, whether or not he might use boxing to help boost up his movement and his just engagement, it also might, you know, that stimulus, but it also might really reduce some stress.

He might be using that as a stress reduction tool. And so, you could also use something, what we call brain breaks in the therapy world, which is you go to a low stimulation environment. It can be, usually we recommend every two hours for 10 to 15 minutes and someone could cycle this with their medication. And you’re just kind of maybe listening to something light you know, feeling calm, thinking about things. You don’t have to completely reduce all stimulation, because sometimes that increases people’s stress when they’re alone with their thoughts, but you could also do a brain break proactively. So, before you engage in a task, go to an appointment, you can have a brain break in the car. We can’t remove stress completely. It’s part of the human experience. It helps us grow and adapt, but we can change how we perceive it and what we do with that information. And allowing ourselves to experience it even during those OFF times.

Around the house, I know you guys really like to hear around the house stuff for home modifications and to keep in mind that any goal with any home changes is to increase your participation in activities and continue with your independence as much as possible. So, any changes that you might do to your home or work environment or anywhere is to increase participation that includes during your OFF times. So that’s things like good lighting in all areas that you perform tasks or your walkways, you wanna have lighting that reduces glare. Because sometimes when people are in those OFF times, their brain actually isn’t processing lighting and their visual information at the same level.

We notice an increase in falls, you know, from movement things, but also how they’re processing information cognitively. So lighting is really key in that you’re not creating a dark room and a light room in your house. You’re trying to stabilize your lighting throughout the home, as you walk through your home and is especially important during those OFF times in order to reduce falls. You also can organize your work area. So, if you’re having an OFF time, but you’re going to get something out of the bathroom or your kitchen or your desk area. And it’s an organized area where you know where everything is. You’re not knocking things over with your hands. If you’re, you know, having some involuntary movements because your space is organized, that really helps during OFF. Handrails of course, grab bars in all areas. And everyone knows about them in the bathroom, but also having grab bars in places that you might be during your OFF times, that’s the doorway, in and out of your garage, or your house entry or in your closet.

So, think about other places that you are moving and functioning and where you could put some of those home modifications and seating in places around the house, the garage, the yard, super helpful, putting a bench by your front door or whatever entryway you go in and out of your house. So, if you need to sit down and dig for your keys or put your package down and you’re feeling OFF that gives you a safe space to do that in order to get into your house safely, without falls. So trying any of those things to have in your house and set you up for success during your OFF time. So, you don’t have to completely stop moving, but you have some more safety precautions in place.

Polly Dawkins:

Yeah. That those are really great strategies. I’ve also heard that like decluttering, moving impediments to movement and also decluttering so that your brain isn’t so full of all the visual stimuli. Is that something that you experience?

Amanda Craig:

Yeah, definitely. And you think about just decluttering what you see as you walk through a pathway in your house, and that makes such a difference.

Polly Dawkins:

Great. Dr. Yaghi does everyone with Parkinson’s experience OFF symptoms or OFF times, and is it dependent on the medications they take or their disease progression? Can you frame that for us?

Yasar Torres-Yaghi:

Wonderful question. It’s hard over time because Parkinson’s disease early on one might experience strong benefit from their regimen of carbidopa levodopa. So, any formulation of carbidopa levodopa, or any medication that could be even an extended-release formulation of dopamine agonist or a monoamine oxidase inhibitor may in fact provide kind of that dopaminergic tone. We call it the dopaminergic tone and imagine kind of a line. When you wake up, you take your medicines and you’re supposed to stay like this. Your dopamine levels should be constant, should be always at a level to help you move so that you don’t have a return of symptoms. Unfortunately, as the condition progresses, we lose neurons. After the age of 25, we start losing neurons. We no longer make more neurons. We just plateau and then steadily decline and in Parkinson’s disease, we lose the neurons that store and release dopamine.

So that concept’s called the dopamine storage buffering capacity. So, we lose the buffering capacity because we have less neurons. So, we take our medicine and we take them throughout the day. And at one point let’s say year two or three, after disease onset, three doses of carbidopa levodopa, keep our dopamine tone just great. Throughout the day, the night, we never feel our symptoms necessarily return in between our doses. As the condition progresses, we lose that buffering capacity, and our gut becomes less reliable in absorbing the medicines that we swallow. So, we can’t really absorb what we take even when we take it on time. So, our patients are doing their best at taking their medicine on the hour, actually on the minute, you know, to take their medicine on time, that pill burden is so high. And despite being on medicine, they still have wearing OFF.

And the wearing OFF happens in between the doses. So, we may have patients that get one or two hours of benefit from their dose of carbidopa levodopa. And sometimes they’re OFF for two to three hours until their next dose. And so that becomes more and more pronounced that wearing OFF becomes more and more pronounced as the disease progresses. That’s one important piece to this. Another important piece is that it’s not the medicine that makes the wearing OFF worse. The medicine, in fact, unfortunately over time, it’s been shown in multiple studies that even though you have OFF time, you can increase your dose of carbidopa levodopa and despite adjusting up the dose or adjusting up the frequency of carbidopa levodopa, despite those two changes, which those two changes are the logical next steps, if you have more OFF time, despite those two changes OFF continues to exist.

And so once OFF is there, it’s very important, as you mentioned Polly, to address it in different ways, you know, do you have a strategy to take care of these OFF episodes or these OFF times? The first step is understanding that they’re there. As we said earlier, you know, understanding what they are is really the key. Joe said it, you know, first make sure you’ve distinguished the OFF episodes as true OFF episodes, understand when they happen, how long they’re there, how severe they feel, how intolerable they are, that’s the first step and understand when they occur in comparison to when your medicine is given and take it. That’s the key or when you eat a high protein meal, that’s another important factor as protein will reduce absorption of levodopa. Another important piece to understanding OFF is recognizing that first OFF, it’s not always the same. OFF can happen in different ways.

It comes in many shapes and forms. Sometimes it’s a tremor. Sometimes it’s freezing of gait, sometimes it’s falls and to kind of synergize with what Amanda was talking about, sometimes it’s a panic attack. Anxiety can be a symptom of wearing OFF. Slowing cognition, cognitive change, reduced cognitive capacity, not a motor symptom at all, and I know this is mainly a motor conversation in OFF, but that can also be, cognitive change can also be a symptom of wearing OFF. Pain, with or without stiffness and rigidity can be a symptom of wearing OFF. And so all of these things need to be determined when they are, how they happen, and they need to be communicated to the healthcare team in a proper way. That’s why conversations like this. We need more and more of them so that we can equip ourselves as patients to be able to then go and say, hey, doctor and healthcare team, look what’s happening to me. Amanda’s an occupational therapist. When someone comes in to see her, if the patient’s in an OFF episode, we’re in trouble, we’re in trouble because we want exercise. We want occupational therapy. We want physical therapy, speech therapy. We want wellness. We want stress reduction. But if we’re having impactful OFF throughout the day, just that can be intolerable. That roller coaster ride that we talk so much about.

Polly Dawkins:

Yeah. So, in the last handful of years, there have been many different medication alternatives that have come out to deal with OFF or rescue. So, the first question I have again for Dr. Yaghi, is there a difference between medications for and rescue meds?

Yasar Torres-Yaghi:

Great question. So, and the therapeutic landscape has continued to evolve and that’s the beauty of Parkinson’s disease care in 2022 is that it’s a very therapeutically, vibrant field, meaning there are a lot of solutions. If we can figure out the different problems, hopefully for many, there are solutions to those problems and the way you take care of it is one, with what’s called rational polypharmacy. Many drugs from different classes in an irrational way is not a good idea, many drugs in combination, that make sense together that synergize with each other is called rational polypharmacy. That is a good idea. Rational polypharmacy in fact is how we succeed in 2022 in treating patients to keep their dopaminergic tone steady. So, you utilize the different drugs that we have. And to answer your question, yes, there’s a difference between on demand, as needed, or rescue therapies. That is different, that category of drug is different than the maintenance drugs that we utilize for OFF.

So, you can combine carbidopa levodopa with a mono oxidase inhibitor that will help reduce OFF time. That’s a maintenance strategy. You’re just taking a medicine once a day to help reduce the OFF time in between your carbidopa levodopa. You may add a dopamine agonist. Typically, we strive for extended-release formulations, very different than the insurance companies. They want you to utilize immediate release formulations. We like extended-release formulations because you take a pill once a day to keep you like this, that’s much better than taking a pill three times a day that makes you go like this, right? If we could have a once-a-day carbidopa levodopa, we’d be in good shape. Right? But so, what we’re trying to do is utilize medications in unison together, there’s istradefylline

which is an A2A receptor antagonist, which is a maintenance medicine. There is an amantadine, many amantadine derivatives, which can be helpful to reduce levodopa induced dyskinesia and improve OFF time. There’s different formulations of carbidopa levodopa extended-release formulations that hopefully aim to reduce OFF time and improve that good ON time. So, we use all these medicines in combination. However, however, if you look at the as needed therapies, it’s like an asthmatic, like my mom, I brought her up twice today. Maybe she’ll be happy that I bring her up all time.

Polly Dawkins:

You wanna say hi?

Yasar Torres-Yaghi:

Hey mom! No. Yeah, I should have her come. So, the truth is she was an asthmatic growing up. I was growing up and part of the reason I went into medicine was because my mom’s struggle with asthma. She had maintenance drugs that she would utilize, but despite being on maintenance medicines to prevent asthma crises or asthma attacks, she still would have sometimes asthma attacks. She would use her as needed therapies in between if she were to have a crisis and that’s, we need to equip ourselves with not only combination therapy for maintenance drugs, extended-release capacity for all of our drugs, whenever possible for maintenance therapies, but also we need to equip ourselves with the different therapies for OFF in an as needed way. So inhaled levodopa, sublingual apomorphine, injectable apomorphine, even a rescue carbidopa levodopa can be helpful. Fractionating levodopa now is another way of taking a quarter, half tab, three quarter tabs. There are these fractionated pills now that can be helpful in an as needed way.

Polly Dawkins:

That was really helpful. Thank you. Joe, have you ever tried any of these strategies personally, or used any as needed or medications? Whoops. We’re not hearing you. No, we need to get you off mute here.

Joe Koeverden:

Yeah, no, I haven’t used any of those other ones. I use amantadine and I forget how pronounce the other one, the drugs that were previously mentioned is support for my levodopa. But I’m not taking anything specifically for the OFF times. I figure when I have the OFF times I get out and do something, try to get my body moving and just try to work through it, push through it, I guess, is the way to do it.

Polly Dawkins:

Push through it.

Joe Koeverden:

Push through it. Yeah. You talked about morning times. I take a CR in the evening to get me through the night and I wake up at five every morning, so my morning starts early, but I don’t take my levodopa until seven. So, I’m about ready to take my dog for a good walk about 7:15. Am I getting out there with my good walking poles and good shoes on, I get a good walk in with my dog and my levodopa is in place.

Polly Dawkins:

That’s great. Amanda, what are some of the other ways that occupational therapy can help someone with Parkinson’s who is suffering from motor symptoms? And their meds are not working.

Amanda Craig:

Well. So occupational therapists or OTs are masters of organization, scheduling, and routine management. So, an OT can help somebody with Parkinson’s look at their schedule and visually lay out all the things that need to happen, all the activities that need to happen. And we like to break down tasks and the nitty gritty. That’s taking a shower and getting dressed and making your breakfast and all the things that you have to do or want to do during the day. That includes your exercise routine, going to appointments, walking your dog, whatever it is, visiting with family. Those are actually, all those tasks I just listed are what we call occupations in occupational therapy. So, laying those out with, you know, with your occupational therapist and looking at your routine and how you’re utilizing your time, and then trying to visualize and map out where your medication times might work into that.

So, using that piece to create a schedule for you and, you know, so an important aspect of this is knowing also when you should or should not be driving if you’re experiencing OFF times. Nobody wants to be in that stuck position, they’re freezing or experiencing involuntary movements while driving, which obviously is scary and dangerous. And so, sometimes when someone knows that they’re having OFF times and they’re still working on tweaking their medications with their providers, they may need to request rides to appointments that might be part of their routine and part of their schedule, or just knowing that they’re not gonna schedule appointments during that time, you know, to make the most out of their PT or OT or speech therapies. A balanced routine is like a dance that you can sustain. You know, something it’s not too much, not too little, trying to reduce pressure on yourself to do it all when you’re ON, because then that can make your OFF times even more pronounced because you’re exhausted.

We have a lot of people with those highs and lows of endurance and just sort of pacing and they’ll do everything they’re ON and then crash when they’re OFF and trying to find a more balanced world. And of course, you know, as we all know nothing set in stone, as soon as you get your schedule in place and you’re feeling good with your medications and your routine, then something changes, your body changes something in life changes, and that’s okay. You know, we just tweak it. We go back to the drawing board and make a few little adjustments and tweak it throughout, you know, life, it’s not gonna be set forever. And that’s okay. So just utilizing your occupational therapist to help you with that is a great place to start.

Polly Dawkins:

Sounds like everybody needs an occupational therapist on their Parkinson’s team, right?

Amanda Craig:

Yeah. I believe so. Yes.

Polly Dawkins:

Sounds like these strategies are things that we don’t necessarily know on our own.

Amanda Craig:

Yeah. Just the functional, real-life things are really what we focus on, you know and as both what Dr. Yaghi and Joe had mentioned, it’s individual for everybody. So, you know, if you’re talking to your providers, your care team and letting them know what OFF times look like for you, because if you just say I’m having OFF times, that, to me, I don’t really know what that means. So, I usually ask a lot of questions. Like, are you, you know, is it this? Is it this? Describe to me, or sometimes if I’m doing a home visit with somebody, I’ll see them during their OFF times, and I can really see, oh, now I know what you’re talking about and then I can make recommendations accordingly.

Polly Dawkins:

Got it, Dr. Yaghi there’s a question that I think you could answer best in the chat. Can repetitive activities like game apps and Sudoku and puzzles, deplete dopamine, and therefore bring on fatigue or OFF times?

Yasar Torres-Yaghi:

A question we get asked a lot, either with kind of cognitive processing. I’m the director of the Parkinson’s and dementia clinic at Georgetown as well. So, I handle a lot of cases where I try and maintain cognitive capacity, you know? And so that’s why that’s a very, very important question. Certainly, it’s important to try your best to maintain kind of intellectual exercising. You know, you want to keep that as part of your life, you know, socialization, reading, brain training exercises. It’s not uncommon for us to prescribe cognition therapy for our patients through either occupational therapy or speech therapy to help us go through brain training exercises for our patients. But yes, either physical drainage and cognitive drainage can occur. If you’re utilizing your brain capacity for either movement or thinking, yes, you can deplete your energy.

You know, if you go through a period of time where you’re trying to focus and maintain attention, you’re utilizing your brain for Sudoku or things like that. You got it. You can have cognitive fatigue, you can lose some of that cognitive endurance because yes, you use those chemicals. You can use those chemicals up, your dopamine levels, acetylcholine levels, all those neurotransmitters are there, but the more you utilize them, then the more, you’re exhausting them, you’re depleting them. So yes, you can run out. You can get exhausted pretty easily. Right? But that said, it’s like if you were to do bicep curls, right? Or what Joe was mentioning, doing exercise, working through his OFF episodes, you know, you wanna keep those muscles strong. Your brain is a muscle. So, one day you may get exhausted at one hour of Sudoku, right? And then you say, oh my goodness, I need a break. You know, let me get some water. Let me take a little break, maybe a mental break. Amanda was calling it a, I think…

Amanda Craig:

A brain break.

Yasar Torres-Yaghi:

A brain break. I love it. I’ve never heard that before. And I love it. Because you may need a brain break after doing something that’s exhaustive like that. That said, if you keep exercising your brain with more and more Sudoku, you can improve your endurance too. And so, remember the brain is a muscle. You have what’s called neuroplasticity. You can reinforce the circuits that are functional by exercising your brain and you can augment the electrical pathways throughout the brain by more and more exercise. Just like if you were to exercise by doing a big and loud program or you’re doing just walking, every time you walk, hopefully the goal is you can, you can walk farther the next time that you do your walk. And so that’s exactly what you’re doing and you may need less brain breaks the more exercise you do.

Polly Dawkins:

That would be beneficial, wouldn’t it? Joe, I know you’re a huge fan of exercise. Tell us a little bit about what your routine is and how do you exercise through OFF times? I know you said you went and boxed in the morning when you wake up.

Joe Koeverden:

Yeah. Walking is, has always been… oops.

Polly Dawkins:

You’re good.

Joe Koeverden:

Good. Walking has always been my go-to exercise over the years. I worked through cancer about 20 years ago and after the surgery and all that, I used to walk all the time, you know, hours a day. And it’s a couple years ago I walked a million steps during the summer to raise awareness for Parkinson’s.

Polly Dawkins:

Wow.

Joe Koeverden:

That’s a million steps on trails, not a million steps around my house. But it was just a way of getting out there. And I found that not only the exercise, but using the proper equipment, I eliminated all the injuries I used to have cause I was working so effectively with the equipment. But yeah, so, and then also just by myself, an E trike, an electric assist trike that has two big wheels to gimme lots of stability. I’m not a little guy, so I needed something that can handle me and I can feel comfortable in that’s not gonna break when I sit on it. And so, it’s given me a whole different angle cause it’s really fun. And in order to keep being active, I gotta take a time when one of the activities has to be a lot of fun by doing that…

Polly Dawkins:

Such a good point.

Joe Koeverden:

It keeps you going.

Polly Dawkins:

Is your E trike an upright or recumbent?

Joe Koeverden:

Recumbent?

Polly Dawkins:

What fun.

Joe Koeverden:

So, like on Sundays I go to the flea market, which is about 10 or 15 kilometers away. And then back again, I recharge it at the flea market to make sure I got enough assist to get me all the way home, but it’s a good run.

Polly Dawkins:

That’s great. Dr. Yaghi, there’s a question in the chat about does exercise, I’m sorry, does exercise tend to shorten ON times?

Yasar Torres-Yaghi:

Yeah. So, exercise can help us cope with OFF times. It depends on the person. You have some people that when they are expending their energy and they’re exercising more, they do feel almost like they drain themselves from the dopamine levels that they have. Right. Cause it’s almost like you’re doing more. So, you’re using more dopamine to help you move. So, I do hear that at least anecdotally in the clinic, I’m not sure it’s ever been studied, actually looking at dopamine levels in your body. It’s hard to correlate that with actual functionality. There’s no true biomarker of dopamine, either in the blood or the cerebral spinal fluid that we can monitor during activities like that. So, it’s all based on report. And so, if a patient sometimes says, you know, I do these exercises, but then I feel like my Parkinson’s symptoms return after an hour of exercise, I feel like I’ve depleted my dopamine stores.

You say, well, you know, that can happen. And I think what’s really happening is that we are living with lower levels of dopamine when we are struggling with Parkinson’s. And so, it’s even more important to optimize your therapies, utilize the maintenance drugs so that you are maintaining dopaminergic tone, the better your dopaminergic tone, the better you’re going to be at coping even subtle decreases of dopamine in your body, right? So that’s where these as needed therapies can be helpful if you hit a very low, low point a Nader, but also what’s helpful is maintenance drugs, utilizing combination therapy, utilizing extended-release formulations so that you have this almost like basal foundational amount. Imagine you utilize one medicine that gets your dopamine tone here.

It’s once a day. Now you’ve added another once-a-day medicine here, you’re utilizing your carbidopa levodopa. But these two medicines that you’ve added to your regimen don’t allow for, when you wear OFF of your levodopa, they stop you from going too far down. They stop you right here. Because now you’ve had two layers of extended-release formulations, so you can’t drop down deep into the valley and that’s where those maintenance drugs really do help. So that reducing the severity of those OFF times so that you can exercise. So, you can go to your occupational therapy appointments, so that you can do all of the different exercises that Joe does to keep his body functional and everything. So, it really is a multi-pronged approach. You’re utilizing all these strategies, but therapeutics is a very important piece to that puzzle.

Polly Dawkins:

Yeah, for sure. Somebody asks and I know we’re getting short on time. We could talk forever about this topic with you all. But does the interaction of endorphins from exercise have any interaction with dopamine or anything to do with OFF or ON? Tell us about that. Whoever has experience with endorphins or…

Yasar Torres-Yaghi:

Well, I’ll be brief just so someone else can answer, but you got it, every time you exercise several things happen. The first thing is we talked about the concept of neuroplasticity, right? You’re reinforcing those circuits that aren’t affected by Parkinson’s. There’s multiple circuits that help you move and you can make them stronger by exercise and you can maintain the basal ganglia circuitry that’s affected in Parkinson’s. You can strengthen that too, even though it’s affected, neuroplasticity. Second concept is what you mentioned, wonderful question, endorphins. Those are chemicals that are released when you exercise, they make you feel good. They help reduce rigidity and stiffness. They make you feel better mental health wise, they make you feel more energy. So, endorphins and all of those chemicals, those chemokines are pain relieving, they make you feel happy, they make you more alert. So that’s great for not just your mobility, but your cognitive function and your mental health. Okay. The third piece, when you exercise, you’re actually improving the levels of the chemicals that help prevent neuronal loss. So, it’s been shown that brain derived neural growth factor, a chemical needed to keep the strength of the myelin sheaths in the brain, as you exercise, you’re actually increasing the levels of brain derived neuro growth factor. So, exercise, exercise, exercise.

Polly Dawkins:

Yes.

Amanda Craig:

I agree. Yeah. And people often think that with Parkinson’s you can’t make improvements or improve your endurance or improve your cognition. And that’s just, it’s not true. We see it all the time and it’s really, really motivating for people to see that progress and continue with it.

Joe Koeverden:

Yeah.

Polly Dawkins:

It’s a, go ahead, Joe.

Joe Koeverden:

I noticed something the other day I was cutting the backyard, cutting the grass in the backyard. And I noticed that I finished the whole backyard without a break. And four years ago, I used to have to take a break halfway through the backyard, but now it’s four years later, expect me have a lower energy and now I can do all the grass cutting, including the little front yard I got all in one swipe. That’s just…

Polly Dawkins:

It’s a victory.

Joe Koeverden:

A victory.

Polly Dawkins:

Yay. Thank you all so much for being here and I’m sorry, we don’t have more time together because what we’re learning is just so important to overall wellbeing with Parkinson’s. Well, thank you to the three of you so much. We appreciate your expertise and work that you all are doing in the Parkinson’s community.

Amanda Craig:

Yeah. Thanks for having us.

Polly Dawkins:

Take care.

To download the audio, click here.

preventing falls and falling “safely”

Read the transcript below or click here to download.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

Now I’d like to welcome Dr. Hannah Fugle to the virtual stage. Hi Hannah.

Hannah Fugle, DPT (Physical Therapist, Northwest Rehabilitation Associates):

Hi.

Polly Dawkins:

Been quite some time since we’ve seen one another.

Hannah Fugle:

Yeah, it’s good to see you.

Polly Dawkins:

It’s great to see you. We have invited you here today to talk about motor symptoms and how they relate to falls and falls are such an important and troublesome issue in our community. As a background, I’d like to let folks know who you are. So, you’re a doctor of physical therapy in Bend, Oregon.

Hannah Fugle:

Yes.

Polly Dawkins:

And you specialize in treating people with neurologic disorders, diseases, and with a special interest in neurodegenerative conditions, like Parkinson’s and MS, and are you okay if I refer to you as Hannah here?

Hannah Fugle:

That’s more than fine. Yeah.

Polly Dawkins:

Okay. Super. Well, thank you for being here. We have traveled together to these events many times in the past, which was really quite fun where we got to know one another. I miss that. I miss being with our community in person, but we’re so glad you could be here on the screen and share your expertise really around falls. So, let’s start with why are falls so common with people with Parkinson’s?

Hannah Fugle:

Yeah. Falls, I find are just a very complex issue. I think some of the other speakers have already touched on some of the aspects, but there’s kind of this global PD pathology that makes us more at risk for losing our balance. What I’d like to do is we’ll just kind of talk about overview and then we can kind of dive into the details of those aspects, but many of the systems that play a critical role in our ability to stay balanced and to keep our body weight over our feet you know, are disrupted by Parkinson’s pathology. So, people with PD often will exhibit postural instability or imbalance. They’ll have a forward stooped posture that can put them at a higher risk. They can develop things like festination or freezing of gait. Often there’s an increase in weakness over time and that can be due to disuse or again, parts of that pathology.

They can have visual impairments, which I know was touched on earlier today. They can have a decreased tolerance to distractions in the environment. They may show impaired motor planning, which was also touched on, I believe in an earlier topic discussion. And then they can also experience something called neurogenic orthostatic hypotension. So, difficulty maintaining blood pressure. That can put them at a higher risk for falls. That certainly isn’t an exhaustive list. But I’ll kind of touch on those aspects today. And then I’ll hopefully touch on a little bit of the environmental factors as well as it relates to home safety and the use of assisted devices.

Polly Dawkins:

Great. So that’s a lot of reasons why people are at risk for falls. And I think the other troublesome aspect is as we get older, our bones become more brittle and prone to breaking, which can lead to really high rates of complication with falls.

Hannah Fugle:

And I think it also contributes to fear of falling, right? The implications of a fall can make people more nervous around falling. And then that often impacts your ability to balance well. I often tell my clients about, you know, high level balance performance. You think about people who surf or skateboard or tight rope walk, or they’re never stiff, right. They’re relaxed. They kind of give and move with those movements. And so being nervous around our falls and anxious can really actually diminish our ability to stay balanced well. Yeah.

Polly Dawkins:

So, what are some strategies that you use in clinic and working with people with Parkinson’s to reduce maybe nervousness or reduce the chance of falling or improve certain muscles? Tell us a little bit about what a great approach is.

Hannah Fugle:

Yeah. I mean, I think it’s, again, because it’s a multifactorial issue, it takes kind of peeling back the layers and working on different aspects. So, if you allow me, I might just walk through some of those different aspects we talked about, you know, a higher risk for falls due to postural instability. Why? Right. Vision, why? So, if you want, I can just kind of run through those. So yeah, the first, I would say just that postural instability, this is one of the main factors in terms of fall risk. So just increased sway or wobble. Less awareness is sort of a limits of stability, you know, where is that edge of balance, where if I tip outside of that, I might topple right over. And then also delayed reactive strategies, oftentimes. So, this may be, you know, adjustments we make at the ankles or at the trunk or even a recovery step if it comes to that.

And then I’ll often just see that people have difficulty with integrating sensory information. So that may be, you know, feeling their feet on the floor and getting good information. It may be from the inner ear system the vestibular system. So, they’ll have more difficulty in eyes closed conditions like the shower or when there’s dark environments getting up to use the restroom in the middle of the night or something like that. I also touched on that idea of that forward flex posture. And this can contribute if you imagine where our body weight is relative to our base or our feet. If our weight is out in front of us, it’s gonna make us much more likely to fall forward or trip on something. I find it can also contribute to festination or that freezing of gait experience. So oftentimes I’m encouraging people… say one more time.

Polly Dawkins:

Would you describe, would you define festination for those who might not know that word?

Hannah Fugle:

Yeah. So, I usually will describe it as an inappropriately scaled movement. So, the body is taking steps, but they’re usually too small. And so, it’s almost like this perpetual falling forward and trying to make up for it. But again, the steps are too small, so it’s a shuffling quality and can appear you know, almost as if a toddler is kind of toppling forward right and that body gets out in front of you. Yeah.

Polly Dawkins:

Backwards, right? The backwards movement of some folks in our community, maybe festination backwards, is that the common?

Hannah Fugle:

Yeah, it can be. So, what they find sort of, as it correlate to falls is people who have freezing of gait or festination can often have more forward falls. People who have difficulty in other areas of postural stability are more likely maybe to go backwards or to the side. That being said, one of the aspects of posture that I’ll often tell folks about, yeah having tightness in the front of your body, your weakness in the back part of your body are gonna contribute to that forward stooped posture. But if you feel like you’re gonna fall backwards, you bet, you bet your body’s also gonna shift forward into that forward flex position. So, for my folks with that forward flex posture, I say it’s kind of chicken or the egg, you know, are you in that position and that’s putting you at a higher risk for falls, or are you assuming that positioning because you feel like you might tip backwards. So really important to find that kind of midline stability in that forward back direction.

Polly Dawkins:

Got it. Okay.

Hannah Fugle:

So, another thing I talked about was a little bit of that freezing of gait, so I can define that for you as well. So, if festination is sort of that small scale movement, that’s, you know, inappropriate or not adequate to keep our body weight up over our feet, freezing is this impaired movement that results in our feet getting kind of stuck to the floor. Often people say, I feel like my feet just stop or they get glued and it’s often around initiation. So, people will often describe it when they first stand up, they have trouble moving, when they initiate a turn, so say turning into the doorway to go to their office or bedroom or whatnot, their feet will freeze, narrow spaces or kind of visual distractions can also drive that freezing. And a big one is just distractions in general. So, I talked a little bit about the idea of dual task tolerance or people having difficulty with distractions. And I find that, you know, it’s really important to work on that skill and to address that to reduce freezing.

Polly Dawkins:

Got it.

Hannah Fugle:

Yeah. And I would say with freezing of gait, it’s, you know, that’s a tough topic, but it can result in the high velocity falls and so for people who freeze, it can be really scary so you may want to use an assisted device. There’s a U-Step Walker specifically designed for people who have that forward fall trajectory. And that can give you a little bit more peace of mind.

Polly Dawkins:

Yeah. Yeah. What about the next topic.

Hannah Fugle:

Yeah, so the other thing I mentioned was weakness and it can make us more prone to falls. If you’ve heard me speak before with the Foundation, you know, I have to talk that there’s different types of muscular strength. One is just force production or torque, how much, you know, can we get out of our muscles? The other is how quickly we can turn on our muscles. Can we recruit them fast enough to, you know, go up a stair or take a quick step? Maybe if we are losing our balance, we need to get that foot out there to catch us. And then the other is the ability to turn on muscles and have them continue to stay active. So postural muscles are a great example of this. If you are working on strengthening, it’s great if you can do 10 repetitions of something that bring you into upright posture, but that’s not good, you know, after you’ve been on your feet for an hour. So, training your muscles specifically for the different types of strength that we need to maintain to stay well balanced. The other aspect, you know, is as we age, unfortunately, there is this decrease in muscle and bone loss. So, it really takes diligence to make sure we don’t lose the bone deposition or muscular strength. So, recommendations are that people, older adults and particularly people with Parkinson’s do engage in resistance or weight-based training consistently in order to maintain that function.

Polly Dawkins:

Any recommendations for specific weight-based trainings that you like for people with Parkinson’s?

Hannah Fugle:

Yeah, yeah. There’s a lot, you know, there’s different ways to achieve that. It may be using your body weight. It may be dumbbells or resistance bands or anything like that. The recommendation is just large muscle groups. So typically, I say, you know, fronts of your thighs, backs of your thighs, your core muscles are huge. Your buttocks muscles are a big driver in upright posture and power and then muscles in the upper back and kind of the posterior aspect of your body will help with positioning and posture. And then one aspect, I think that is often missed is also looking at the ankle complex. So, one of our first lines of defense for balance is what’s called an ankle strategy, right? If you step on something uneven in an ideal system, that body will just correct with a small motion at the ankle. So, making sure you have strength in your calf muscles and the fronts of your shins can also be really helpful in terms of maintaining your balance.

Polly Dawkins:

So, calf and front of your shin helps with your ankle, is that right?

Hannah Fugle:

So, it’s gonna help with, yeah kind of the dynamic stability, but also the ability of that ankle to correct for little perturbations or shifts in your weight that occur, you know, if you get bumped into or you step on something uneven.

Polly Dawkins:

Any recommendations of what people can do for calf and shin strengthening?

Hannah Fugle:

Yeah. So, heel raises are classic. Hold onto the counter, pop up onto your toes, you know, and run through that for a number of repetitions until you get some fatigue in that lower leg. In the same way you can hold onto that counter, pull your toes up towards the ceiling, avoid kind of leaning back and shifting away from that counter, but really trying to use the muscular effort. And then the other is just standing on surfaces that are compliant, something that’s a little swishy or wobbly could be a foam pillow, or, you know, patio cushion requires small stabilization in the ankle complex as well.

Polly Dawkins:

That’s great, things you have around your house that you could…

Hannah Fugle:

Exactly. Yes.

Polly Dawkins:

But you were saying stabilize yourself near a counter or what’s your recommendation to really prevent falls?

Hannah Fugle:

Yeah. When people are practicing balance, my favorite is and actually this is a pretty good description here but is a back to the corner and then a chair or a Walker or something locked in front. And that way, if there’s a loss in stability in any direction, there’s some stable surface that will prevent a fall.

Polly Dawkins:

That’s a great idea.

Hannah Fugle:

Yeah. So, if you don’t have a corner in the house consider closing a door and that sometimes creates a corner that you don’t already have in mind.

Polly Dawkins:

Closing a door?

Hannah Fugle:

Yeah. So, a lot of times people say, oh, I don’t have any corners, but if you close, you know, a door to the bedroom, oftentimes behind the door you can create a safe environment.

Polly Dawkins:

Oh, that’s a great idea. That’s a great idea. Ok, we’ve talked about muscles, next topic that you wanted to touch on.

Hannah Fugle:

Yeah. I’m gonna talk about vision. So, balance, you know, in order to stay stable on our feet, we really rely on three systems. One of those is vision. What we gather about our inner environment, from what we see. The other is that inner ear, which I touched on a little bit, the vestibular system and then sensory information we get from feet or ankles, even feeling your bum on the seat you’re sitting in, right, helps, you know where you are in space. If vision is compromised, it obviously will impact our ability to use that resource and people with PD, you know, it’s problematic, because they often are compensating visually for deficits in other automatic or internally generated movements that compensate for that postural instability. So, it was touched on I know in an earlier talk that people with PD can develop visual blurring or double vision. They can have field cuts or glaucoma or, you know, macular degeneration or other things that compromise their ability to use that visual resource. So, thinking about the importance of this, you know, when you’re navigating curbs or uneven ground or busy environments more likely to trip on something or bump into something.

Polly Dawkins:

Are there strategies that you and the physical therapy world recommend for vision and eyesight?

Hannah Fugle:

Yeah. I mean it’s a little bit outside of our scope. I usually will defer that, you know, to occupational therapy, some occupational therapists their passion is that visual training and sort of home set up and environmental awareness. And the other, as it was recommended was to work with an optometrist, you know, make sure that your glasses are up to date. If you’re having double vision, don’t just, you know, whisk it away, but really know that there are things to address that prism lenses are an opportunity to maybe correct for that a little bit, but again, very, very important to just work consistently with an optometrist. We do have a neuro ophthalmologist in our community, which is a huge resource to us. So, if you have access to that, it may be the right choice. I’ve found that some of our just general optometrists aren’t as well versed at working with our neuro population. So, finding somebody who you know, is aware of visual dynamics and not just, oh yeah, your visual acuity’s good. No problem. Because I do get patients that’ll come in and they’re like, I still can’t see and I’m not sure what’s going on. So, you know, explore your options in terms of optometrists and find somebody who understands PD pathology.

Polly Dawkins:

Great. Got a couple of other questions and a few questions from the audience, we have about 10 minutes together if that’s okay for you. And I want to make sure that we touch on every topic you wanted to talk about today as well. The one question from Kevin in the chat is what are your thoughts on plyometric exercise?

Hannah Fugle:

Yeah. So, I’m assuming by plyometrics he means kind of dynamic strengthening or kind of full body movements? My best guess? Yeah. I mean, I’m certainly all for that. I think, you know, when we talk about postal instability, we’re talking about a lot of different aspects of balance, static balance or your ability to just balance standing still is really just a very small part of your balance ability. So, you know, full body, large scale movements, including kind of dynamic or walking balance you know, reactive strategies and those, you know, larger adjustments than just an ankle strategy are really critical to work on. So, you know, again, full body movements, things like PWR or LSVT Big are great options. So, if that’s kinda what’s being referenced, I think that’s a great tool.

Polly Dawkins:

Super. Janet asks you that if somebody, a person with Parkinson’s can do yoga practice, that incorporates large muscle groups like sun salutations, would that be enough of a weight bearing exercise to help deter Parkinson’s issues?

Hannah Fugle:

So, I mean, I think any amount of movement is helpful for, you know, motor severity. Aerobic exercise and resistance training are particularly well supported in terms of reducing that motor severity score. In terms of weight bearing, body weight is good. If you can add more weight, that’s gonna be helpful in terms of building muscle and developing that bone strength. From a balanced standpoint, you know, shifting your weight, controlling where your weight is over whatever base you have, yoga can be a great option. Tai Chi can also be a nice kind of community or group-based intervention to work on that.

Polly Dawkins:

Got it. Somebody else asks, Susie asks if you have back problems and I’m assuming pain, because she refers to pain as well. What is the best way to work on strengthening the back?

Hannah Fugle:

Yeah. So, I think typically people wanna target the low back, right? If they have low back pain, I’m like, I need to strengthen my back. But what you actually need to do typically in that environment is to offload your back. So, strengthening your core muscles or deep abdominals and your glutes or your buttocks muscles. So, stabilizing around that low back takes the pressure off of that area. So, working with PT, I always recommend physical therapy for low back pain because it can again have multiple factors. For folks with Parkinson’s, it can also be related to axial rigidity. So, trying kind of large-scale rotations can also help if there’s a stiffness related to that symptom.

Polly Dawkins:

That makes good sense.

Hannah Fugle:

Yeah.

Polly Dawkins:

This might be more of an occupational therapy question, but perhaps you might have thoughts on it. How do you slow down when putting stuff away? This person says I fall when I twist my upper body when I’m in a hurry.

Hannah Fugle:

So yeah, I think probably there is some level of home safety set-up that would be beneficial here. I think just being mindful of where your feet are relative to your body weight probably is the biggest thing in that scenario. Turning can be a common place where people lose their stability because their body weight gets kind of outside of where their feet are standing and that results in a fall. Working with physical therapy specifically, I will often use interventions practice turning on a treadmill within a safety net, which allows you to work on the speed and agility and power of a step when you’re turning to make sure that you’re not getting this kind of smaller stuttering step that may catch on the floor, catch on the carpet, and result in a fall. That’s a tough one. Turning is worth addressing though. And again, I think the clinic environment can be a great place if that somewhere where you find that you are falling repeatedly.

Polly Dawkins:

Like I asked Amanda or said to Amanda, it seems like everybody should have a physical therapist on their Parkinson’s team.

Hannah Fugle:

I do recommend it. Yes.

Polly Dawkins:

So, tell me, why is that the case? Why do you recommend that? Why and how often should a person with Parkinson’s see a physical therapist?

Hannah Fugle:

I think, you know, it’s a movement disorder and exercise is one of the number one things that we can do to manage the symptoms, both motor and non-motor. So physical therapy, we are movement specialists. That’s what we do. When my clients come in, you know, with Parkinson’s my first goal is education. And then a baseline testing. So, we use objective testing to look at different types of balance. We look at different aspects of your walking and then we say, okay, well from there, how do we get you where you want to be functionally? Right? Neuroplasticity is real and practice makes better. So, the clinic environment can be a great place to help you challenge yourself and your system in a way that wouldn’t be safe within the home setting. But also designing home program or answering specific questions you may have or movement aspects that you may be presenting with.

And then, you know, PT can be really helpful, I think in collaborating with neurologists and movement specialists. Because we do have more time with you in the clinic. I take my objective testing and very thorough. And I will present that to the neurologist, even implementing testing specifically if they’ve had a medication change in the last two weeks or six weeks or something like that, because then we can say, okay, is this positively impacting their movement? Or is it maybe resulting in increased dyskinesias or something else that’s making them you know, less functional overall.

Polly Dawkins:

That makes sense. Yeah. Yeah. Somebody. Go ahead.

Hannah Fugle:

One aspect I wanna make sure I just touch on briefly today is because I think it’s not often talked about or not fully understood is the idea of that dual task or distractions and then the impact of motor planning on balance and risk for falls. So, one thing I find is that people who have difficulty in distracting environments are more likely to fall or to festinate or to freeze. And so even the example of the gentleman in the closet turning and losing his balance, you know, he’s doing two things at once. He’s balancing and turning while holding something in his hand and thinking through where he is gonna put that shirt or putting it on a hanger or whatnot. So, it’s a good example of if your body is compromised in those environments, it might be worth training that, so what’s neat is that we see it is an area where things change if we practice it as a specific skill.

So one way to kind of check in on yourself if this maybe is something that you deal with is, you know, if you’re walking and talking to your spouse or a friend, do you slow down when you answer their question or do you even have to stop your feet you know, to complete that sentence and that might be an indication that that system or your body’s ability to efficiently shift between those two tasks is slowed. And so again, that might put you at a higher risk for falls and then that other piece, that motor planning, and I know this was touched on earlier is really your body’s ability to kind of see your environment, to problem solve, how you’re gonna move your body in sequence to safely complete that task. And unfortunately, this can be compromised. So, people choose either really inefficient or illogical ways of moving.

They may add extra steps or turns. They may leave their Walker in a place that’s entirely unsafe and cause for tripping hazard. I find this doesn’t always improve amazingly with intervention. So really just a call out to caregiver’s spouses, loved ones. You know, if you’re seeing this, sometimes it can be critical that you play kind of quarterback, you know, you see the field and you anticipate. Try to be one step ahead, move obstacles that might be a tripping hazard or say, you know, okay, let’s go this way because this is the clearest path. Just kind of assisting that brain again to move safely through the world.

Polly Dawkins:

Yeah. That’s an important part of the team approach, isn’t it?

Hannah Fugle:

Absolutely. Yeah.

Polly Dawkins:

I’ve often heard our movement disorder neurologist friend Helen Bronte-Stewart who’s a dancer as well as a movement disorder neurologist talk about training your deficits and that’s what athletes do as well I expect.

Hannah Fugle:

Absolutely.

Polly Dawkins:

Really working on those topics with that are not the easy things with your physical therapist and leaning to those deficits, training those deficits might be some of the most important things you can do to your safety.

Hannah Fugle:

Absolutely. Yeah. And I think, again, you go back to that idea of fear of falling, you know, a lot of times that makes people avoid those things. But that only puts you at a higher risk for fall. So, working again with a physical therapist or, you know, a movement specialist of some kind allows you to hopefully overcome that barrier of fear by using equipment or having an extra pair of skilled hands on you so that you can challenge that system and not be at risk for falls, right.

Polly Dawkins:

Yeah. Time is flown by Hannah and I think we’re…

Hannah Fugle:

Yes, it always does.

Polly Dawkins:

It always does. If you were to have a missive or a takeaway that you would like to tell folks who are watching, one piece of advice or take away, what would you ask folks to think about or do?

Hannah Fugle:

I’d say keep moving, don’t stop moving. You know, whether that’s aerobic exercise, resistance training, balance specific training, you know, that’s one of the big things in terms of reducing that motor disease severity. So, keep moving and I think Joe touched on it, you know, ways that you enjoy moving are critical because you’ll keep doing it. So as a PT, my biggest thing is yes, keep coming to see me and we’ll challenge those specific aspects to keep you as safe and functional as possible, but really critical that people recognize, you know, the other 165 hours of the week or whatever there is left after they’ve seen me for maybe two sessions. That’s the ticket, you know, is to keep moving in those hours remaining throughout the week.

Polly Dawkins:

Hannah, it’s always great chatting with you and learning from you. Thank you for what you do for our community. And of course, we’ll have you back here again.

Hannah Fugle:

Yes, please. I always love speaking, helping educate and, you know, share the knowledge that I have with the world of Parkinson’s.

Polly Dawkins:

Thank you so much.

Hannah Fugle:

Yeah.

Polly Dawkins:

Take care.

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