The Parkinson's You Don't See: Cognitive and Non-motor Symptoms

you thank you very much for having me back this is my second year speaking on this topic we're going to talk about today the Parkinson's you don't see the non-motor symptoms of Parkinson's disease which for those of you who are living with the disease know can be much more debilitating and much more impactful on your quality of life than the motor symptoms my objectives today is to understand the cognitive and behavioral changes that occur in this this motor disease to help you identify the common types of problems that exist and to learn techniques for managing the challenges unfortunately up to probably gosh even today and people who don't know a lot about the disease when you go into a community neurologist for your diagnosis you very well may be told you've got Parkinson's disease it's a motor syndrome here's your Sinemet I'll see you in three months nothing's mentioned to you about the other changes that are going to occur and so people are very often left with this question of oh my gosh do I have multiple things going on what am I going to do about the constipation why am I feeling so down and sad etc etc it's important to understand these problems so that you can be more of an advocate for yourself and for your loved ones and you can be a bit more forceful we'll say with some of your health care providers so what we're going to do is first of all I have to tell you a little bit about the pathology of Parkinson's because that helps you understand where all of these problems come from you all know about dopamine the substantia [ __ ] starts generate and the brain loses its most important source of dopamine but there are actually two sites that dopamine comes into from the substantia [ __ ] the first the basal ganglia is very important for your movements also for your thinking the basal ganglia is directly connected to the frontal lobes of the brain very important for your executive functions meaning your ability to think sucks flexibly your ability to problem-solve to initiate behavior and so forth the other area the nucleus accumbens is important for your behavioral regulation so when dopamine becomes abnormal in that area you can start to see changes in personality and in behaviors things like hallucinations or even impulse control problems but there are two other at Richter there are two other several other neurotransmitter systems that are also impacted by Parkinson's the serotonergic system which is important for mood regulation and the cholinergic system that's important for alertness are also impacted by this disease so what we need to do is talk about all of these changes let's go ahead and talk about first the different classes of changes that occur in Parkinson's disease cognitive problems are very common and I'm going to spend the bulk of my time talking about that today because that's my area focus but also realize that changes in personality are a common upwards of 50% of individuals who are developing Parkinson's disease will experience unusual anxiety symptoms that they're not used to having in their in their normal day to day functions sleep disturbance impacts probably close to 90% of people with Parkinson's disease we'll talk a bit more about it but this could be anything from fragmented sleep at night to sleepiness during the day autonomic system dysfunction bladder control problems constipation difficulty with heat temperature regulation problem with saliva and tear production decreased sense of smell may have been one of the earliest symptoms of your disease before your trimmer even started and on there the very bottom should have been pain syndrome except for that speaks to my memory disorder so pain is a very common in early symptoms of Parkinson's disease upwards of 30% of people will describe a pain syndrome that can't quite get figured out by anybody okay go ahead now roughly 95% almost everybody with Parkinson's disease will develop some type of change in their thinking I don't want that to scare you okay what I want you to understand is the type of changes we're talking about because with some changes in your day to day routine you can overcome that type of change unfortunately about 25 to 30 percent of people with Parkinson's will develop a frank dementia and I know that word is so scary for people because automatically you assume Alzheimer's disease so I want to spend just a minute to debunk the myth of what dementia is dementia just means that there are two areas of thinking that are impaired enough that they begin to interfere with your day-to-day functioning so those two areas could be executive function you have a difficult time organizing your day and language you're having trouble responding to people but the problems with communication and executive function are severe enough that they're keeping you from doing everything you would have normally done that's the definition of dementia there are many many causes of dementia Parkinson's disease is one and Alzheimer's disease is another but they look different the progression is different and the impact on memory is different okay what are the types of changes that most affect folks with Parkinson's disease the first are difficulties with attention and working memory so people with Parkinson's will also often complain to me that they feel like they're clear Isabel one moment and quite confused and cloudy the next and this may fluctuate across the day it may fluctuate across a week but at times a person with Parkinson's will tell me I'm just not quite as clear as I usually am that most likely is related to fluctuations in the amount of acetylcholine in the brain folks with Parkinson's will often complain to me that they have a hard time whole their thoughts online that they're struggling to keep their train of thought so in the middle of the conversation they may zone out and suddenly forget where they were next okay other problems most common executive dysfunction so these are problems with problem-solving planning and organization decision-making even retrieval of words falls under this executive dysfunction so folks will tell me I know what I want to say it's right there it's on the tip of my tongue but it will not come out cognitive flexibility can sometimes be a problem so an individual gets stuck on a sin on a single topic and can't quite break free from that topic and it's very frustrating for caregivers but it's also frustrating for the person with Parkinson's disease and sometimes I have to do a little bit of Education for the loved ones of folks with Parkinson's because very often I'll hear what he's doing it on purpose and it's true he might be doing it on purpose but it's probably also the fact that the brain is changing a bit and it's harder to jump to a new topic okay initiation and motivation is probably the most frustrating part of executive dysfunction for people with Parkinson's disease so you could have a very active dynamic person who suddenly can't quite find the get up and go to engage in their exercise program or has a harder time with family gatherings because they just can't quite get motivated to do it okay we spend a lot of time trying to disentangle whether that's a mood problem whether it's depression or whether it's an apathy problem an actual executive dysfunction and with a little bit of careful questioning we can usually do that vigil spatial dysfunction is very common I'm gonna use a perfect example I'll tell you right now that I've been lost behind here in this in this church no less than 10 times today and you would think at some point I would actually remember how to get from our conference room to out here but I've yet to do it that is visio spatial dysfunction and I'm pretty sure it's just a normal weakness of mine but it could actually develop into something more I'll let you know election next year other other forms of executive function could be trouble with depth perception bumping into walls some individuals with Parkinson's disease are going to develop visual hallucinations even early in the course of the disease those can be very scary to caregivers and sometimes to the patient's themselves essentially what it is is the brain is not not using dopamine effectively and in some cases it's because of the disease itself in some cases it's because of the medications and we're going to talk about that in just a few minutes speech and language problems are extremely frustrating for folks who have Parkinson's disease there's nothing worse than trying to express something and have someone say what I didn't hear you can you say it again because oftentimes the voice regulation in Parkinson's disease is affected fairly early on the programs that we have the big and bold programs the trimble cleft programs help maintain that volume and that voice regulation which is helpful for improving quality of life and folks who have Parkinson's disease memory is one of the scariest parts of this term dementia but I'm going to tell you right now that in most people with Parkinson's disease you will never have a memory problem like in Alzheimer's disease for the most part the memory problem that occurs in Parkinson's disease is related to difficulty retrieving information or encoding it in the first place but once that conversation once that detail is encoded it doesn't get lost most people with Parkinson's disease will never forget who they are or who their family is it's a very different type of a memory disorder personality changes can be much more difficult sometimes these personality changes are due to the fact that an individual is having a difficult time adjusting to this newfound disease that's causing disability and sometimes the personality changes due to Parkinson's disease itself but we hear people often times talk about greater irritability difficulties with frustration sadness and depression is probably one of the most common non-motor symptoms of Parkinson's disease occurs in close to 30 to 50 percent of individuals even early on in the course of the disease some folks will develop some suspiciousness apathy is also very very common the the inability to motivate themselves or become engaged some folks with Parkinson's disease will develop some denial some families of people with Parkinson's disease will develop denial anxiety probably one of the most common features and then aggression very rarely the behavioral consequences are very often related to your dopamine treatments and it's important for you to be followed by a movement disorder specialist who understands this relationship between the disease and the side effects of the treatments that we use to treat that disease psychotic behavior so those are visual hallucinations delusions they occur in isolation before someone's been treated with dopinder dopaminergic drugs but some of the dopaminergic drugs can exacerbate or escalate the frequency so we know that the dopamine agonists in particular can cause visual hallucinations impulse control problems are common side effect of the dopamine agonist drugs so these are folks who develop some obsessive compulsive behaviors towards gambling towards sex towards shopping along that line our dopamine distant regulation syndrome so some folks will actually become a bit addicted to their l-dopa it activates the reward center of the brain so you can imagine that it can become very rewarding to take that dopamine drug and that's very difficult for us to manage sleep disorders sleep disorder absolutely is a part of Parkinson's disease but it can be made quite a bit worse by your dopaminergic therapies in particular some people will develop what are called sleep attacks so during the course of their normal day they'll fall asleep without warning and this can be obviously very dangerous when you're driving can also be very disruptive for a person who's trying to continue working or doing volunteer work so we have to really think about that and talk to your providers about what could be causing this sleepiness during the day Falls are another very often people will be taking over the counter sleep drugs because their sleep is so fragmented but realize a lot of those over the counter sleep drugs include benadryl as an antihistamine that puts you to sleep and that drug has anticholinergic properties that can actually cause some confusion and a higher risk of Falls later on the same goes with the anxiolytics like Xanax and Valium so you want to really work with your healthcare provider your physicians to understand what different ways of treating your sleep disorder is that don't then exacerbate some of the other symptoms of your Parkinson's disease what are we going to do to beat these things so now you have an idea of some of these problems that are coming up how are you going to address them because that's what this conference is all about first of all recognize that you are neither crazy nor lazy unfortunately some folks with Parkinson's disease have not had very good education about what this disease looks like so as these symptoms are developing they start to really lose their self-confidence and feel as if there's something that they're doing either consciously or subconsciously that's causing some of the thinking problems or that's causing some of the depression it's important to speak with your movement disorder specialist about the side effects in the vast majority of cases of impulse control disorder we don't know that you're having those behaviors until often it's too late I've had patients who have lost considerable fortune to gambling because they hit it being embarrassed about the fact that they couldn't stop realize that we can make changes to your drug regimen that can improve or decrease the likelihood of those impulse control problems which occur in about 15% of people who are on the dopamine agonists watch out for medication side effects this is one of the reasons why I say it's really important for you to be involved with the dopamine specialists I mean dopamine specialists go find a dopamine specialist and be involved with that person a movement disorder specialist the movement disorder specialists have a very good sense about the complexity of Parkinson's disease and how these different drugs impact both well and poorly your entire body if you if you really do a good job of evaluating the problem the sleep disorder the depression the cognitive decline we can develop some treatment plans that help you then address it and discuss the problem with others who you trust so if you are seeing things that aren't there tell someone because there may be ways that we can address your environment to help reduce the likelihood of having those hallucinations unless of course the hallucinations are pleasurable then leave them alone and move on to the next thing managing the alertness and attention problem okay realize that your brain chemistry has changed with Parkinson's disease the amount of neurotransmitter that you have available to your brain fluctuates and you will identify your good time of the day do most of your work during that good time of the day if you're still trying to work full time building your schedule so that you can do a few hours in the morning have a rest and maybe pick pick up a few hours in the afternoon this is the dumbest part of my slide but reduce stress and if you can figure out how to do that you're way better than I am but it's important because stress depletes the body's energy stores it emits a lot of cortical steroids that don't do anything for your thinking and especially not for your mood rule out those medication side effects a lot of the the dopaminergic agents can actually cause sleep disorder and sleep problems we need to get rid of those over time so that you can be more alert during the day always schedule a short nap 30 minutes perfect 20 minutes perfect if it's more than an hour and moving into two then we need to address that and don't over schedule yourself I know it's hard to do but more than a couple appointments during the day and you'll find yourself really drawn for executive dysfunction limit the options if you have a loved one who's starting to have trouble making decisions don't ask what do you want for dinner because that involves I don't know a thousand different choices ask would you like spaghetti tonight or Mexican food and go from there try to limit distractions it's impossible to have a conversation with someone if the cell phone is ringing and the TV's on and four or five people are walking in and out of the room use all of those pneumonic devices like calendars and lists to try to keep you on top of what's next and simplify the steps don't ask someone to go get dressed you might as well have asked them to go build a rocket out in front of the front yard because there's so many steps for getting dressed well what do I wear what do I take off first help out by giving single steps and remind others to slow down let a person with Parkinson's disease get out their thoughts so that you can be sure that you are addressing their needs next slide the communication problems sometimes early intervention like with a speech therapist can be very helpful especially if the issue is is regulation of the voice there's very helpful you saw some this morning techniques that can be used to help you maintain a conscious control over a behavior that used to be unconscious and that's part of what you're going to do with Parkinson's disease go ahead the depression and grief is treatable so first of all realize that the same therapies that help with anyone who develops depression can help with Parkinson's disease there you see exercise with three exclamation points after it and the reason for that is more and more and more now we're seeing that exercise is directly related to your mental health in non Parkinson's disease studies we've actually found that exercise is as beneficial as any of the pharmacological agents that we have out there so think about that as you're moving forward apathy is much harder to manage than the depression believe it or not because apathy is usually related directly to changes in those brain circuits it oftentimes will take a caregiver to help with the apathy to actually get a person moving by keeping this schedule routine and by not giving essentially options as far as what we're doing next that overcomes the inertia and helps an individual stay active in their day to day life so schedule the exercise schedule the social outings schedule the time that you can be with your family and your friends in small groups a lot of times people want to have these big gatherings and then they realize it's not any fun for someone with Parkinson's disease because it's impossible to keep up with the flow of the conversation so do things with smaller groups of people and you'll find that person and join it much more denial and lack of insight is always very difficult remember that it's impossible to remember what you forget okay that's my little catchphrase but think about that it is impossible to remember what you forget so if you as a loved one is constantly telling your your spouse or your parents don't you remember I told you this already well that's not the way it happened don't you remember well of course I don't remember if I remembered I would have remembered so you have to think about that because the more that you insist that someone's forgotten something the more likely that person is going to develop some suspicion of you very rarely are we willing to look at ourselves and say there's something wrong with me but I'm very willing to look at you and say clearly there's something wrong with you so the more you insist that the persons miss something the more likely you're going to develop some raishin some rigidity and frankly some animosity towards you okay so if it's something that can be let go let it go if it's something that's involving health and safety obviously you're going to have to address that but you may need to do it in a more direct manner than trying to remind the person why they need help in this area now well I did that fast faster than I usually do okay so these diseases caused a lot of difficult problems and it's important to recognize that the symptoms that you're having may very well be related just to your Parkinson's disease unfortunately some people develop some of these symptoms and they think gosh there must be something else going on and they go through endless tests to figure out why they're having some pain or they go through endless tests to try to figure out why they're having constipation and in reality it's their disease process Parkinson's disease is a very systemic disease it affects most of your body and so you have to be aware that some of the symptoms that you have are not going to be these these motor symptoms that are very easily seen in fact most people have a harder time dealing with the non-motor symptoms and unfortunately people who don't have Parkinson's disease have a much harder time understanding those non-motor symptoms much easier to understand what you can see than what you can't recognize that the non-motor symptoms are also directly related to the brain and very often the medication that we're using to treat the brain earlier today the question of when do you start your DBS treatment came up more and more now we're starting to look at the fact that the earlier you use DBS the less dope anarchic treatment you may need over the course of your life and that might help ameliorate some of those really difficult non-motor symptoms that people experience realize that behavioral techniques just changing the way you deal with your day to day active can actually improve your quality of life therapy's speech physical therapy occupational therapy therapies for depression are beneficial and Parkinson's disease exercise beneficial in Parkinson's disease and frankly in every other person that's out here so exercise together and focus on rest socialization mental activity and your nutrition the healthier your body is the more stamina and energy you'll have to manage some of these challenges also it's hard to do but try very hard not to put your head in the sand when you're noticing that you're starting to have some problems speak up and tell your doctors right away so that they can start to look at whether there are things that we can do to improve those problems and improve your quality of life ultimately that's that's the goal for all of us is to improve your quality of life I thank you very much for your attention today and I will stop now you

Channel: Davis Phinney Foundation for Parkinson's

Views: 456,826

Rating: 4.7299619 out of 5

Keywords: Davis Phinney Foundation, Parkinson's Disease, Living Well with Parkinson's, Joanne Hamilton, motor symptoms of Parkinson's, non-motor sysmptoms of Parkinson's, cognitive decline in Parkinson's

Id: S2LP_5PC9LU

Length: 26min 7sec (1567 seconds)

Published: Tue Apr 01 2014

Reddit Comments

[u/ParkieDude]

https://youtu.be/S2LP_5PC9LU?t=1101

Limit your options

NOT: "what do you want for dinner" is just too confusing. Ask "would you like spaghetti or taco's?"

Oh, my running clothes: bright high visibility shirt, compression underwear, black shorts. Compression Socks. Running shoes.

I have FIVE sets of running clothes! My wife wonders 'why do you need five sets?" Simple, I don't have to think about what to wear to go running.

Distractions (limit them) and why it causes so many problems for those of us with Parkinson's.

​

https://youtu.be/S2LP_5PC9LU?t=1202

DEPRESSION and grief is treatable

Exercise is critical. Exercise is the best medicine, better than any pharmaceutical solution for depression.

Exercise is essential for good physical and mental health

Apathy - Schedule events. Friends in small groups.

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https://youtu.be/S2LP_5PC9LU?t=1298

Denial and lack of insight. Do not tell a person with Parkinson's "Don't you remember, I already told you that". No, we don't remember. This leads to mistrust.

[u/ParkieDude]

Excellent Presentation!

[u/cynica]

Great find and thank you for sharing this! My mother was just recently diagnosed before Christmas. Since then, she's been saying things like "this will be my last Christmas... this will be my last etc etc..." and it's really painful hearing that from her. It's just me and her. I have no other family in the states. My mom is a super devote Catholic and I feel like she's surrendering herself to god.... I hate it. I tell her not to give up but she says things like "I'm ready", "I'm not afraid to die", "Many of my friends are with god now...". Watching this really helped put some cement on the foundation of my understanding of Parkinson. Now I just have to conjure up some strength so I can stay positive while I'm around her.

[u/MomoTheFarmer]

THANK YOU !!!!! My father was diagnosed this year, and I needed to watch this; I’ll also share with my mom who is struggling.

[u/Whackamole68]

This video is so important.

[u/Bluthiest]

Thank you for posting. Is there a way to see the slides she was referring to?