Parkinson's Hidden Battles: Addressing Non-Motor Symptoms for Better Living

Are you living with Parkinson's disease and finding that the challenges extend far beyond tremors and movement difficulties? In this crucial episode of the Live Parkinson's - Live an Exceptional Life podcast, we delve into the often-overlooked world of non-motor symptoms (NMS). We unpack these "hidden battles" that can significantly impact your daily life, from sleep disturbances and mood changes to cognitive issues and autonomic dysfunction. Learn why recognizing and addressing these symptoms is vital for improving your overall well-being and living a more fulfilling life with Parkinson's.

In this essential episode, you'll discover:

• What are Non-Motor Symptoms (NMS) in Parkinson's? Understanding the wide range of symptoms beyond movement, including sleep, mood, cognition, pain, and more.
• Why Non-Motor Symptoms Matter: Learn how these often-invisible challenges can significantly affect your quality of life, sometimes even more than motor symptoms.
• Key Non-Motor Symptom Areas: We explore common issues like sleep disorders (insomnia, RBD), mood changes (depression, anxiety, apathy), cognitive shifts, and autonomic dysfunction (constipation, blood pressure issues).
• Practical Strategies for Managing NMS: Gain insights into potential approaches and therapies to address these challenging aspects of Parkinson's.
• Empowering Yourself for Better Living: Discover how recognizing and communicating your non-motor symptoms can lead to more effective care and a higher quality of life.

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Chapters

• 0:10 Introduction to Non-Motor Symptoms
• 3:16 Understanding Non-Motor Symptoms and Causes
• 8:36 Categories and Impact on Daily Life
• 12:53 Mood and Mind: Depression and Anxiety
• 17:58 Sleep Disorders in Parkinson's
• 30:11 Autonomic Dysfunction and Body Regulation
• 34:46 Why Recognizing Symptoms Matters
• 37:15 Resources and Closing Thoughts

Transcript

Speaker 1: 0:10

Hello and welcome to Live Parkinson's live an exceptional life. I'm your host, chris Kustenbader, and I've been living an exceptional life with Parkinson's for the past 15 years. The mission of this podcast is to help as many people as possible living with Parkinson's to lead a great quality of life. Today's topic is Parkinson's hidden battles addressing non-motor symptoms for better living. Parkinson's can feel like a constant fight, and while the motor symptoms are often the focus, the non-motor symptoms can be just as debilitating. But what if I told you that understanding and addressing these hidden battles from sleep to mood, to sensory changes could unlock a significant improvement in your daily life? Join us as we explore how to control our non-motor symptoms and live a better life with Parkinson's. Now, one thing I've learned living with Parkinson's for 15 years is that each day can bring different challenges Balance issues, tremor, walking problems. But in addition to these motor symptoms, a number of non-motor symptoms that I've experienced, including sleep issues, fatigue, anxiety and cognitive changes, have all had a negative impact on my quality of life. So in this episode, I want to share with you tips and strategies I've learned personally and from others on dealing with the non-motor symptoms to live your best life with Parkinson's. Now I'll also be sharing expert advice on strategies to help you manage your non-motor symptoms. Now, before we dive into today's episode, I want to remind you that if you're looking for expert advice on building a strong Parkinson's care team, check out my Building your Parkinson's Care Team Resource Guide and Workbook, and you can find it at liveparkinsonscom or on my Ko-fi shop at ko-ficom slash liveparkinsons. And if you'd like to support the podcast to help keep it running, visit my Ko-fi page at ko-ficom slash liveparkinsons. And thank you for your support.

Speaker 1: 2:00

All right, let's take a look at what we'll be discussing in this episode. We're going to lead it off with defining what non-motor symptoms are and how they affect our quality of life. Then we'll transition to the different categories of motor symptoms that you may experience. Now remember Parkinson's is often referred to as a boutique disease, meaning, while a number of symptoms are common between everyone, each person will experience a variety of symptoms that may be different from someone else, so everyone's journey is going to be different. Then it's time to look at each category of non-motor symptoms in detail and give you specific, actionable strategies to manage each one as you live your best life with Parkinson's. After this, we'll transition into why recognizing these non-motor symptoms matter and then close it out with resources that you can use to manage your non-motor symptoms.

Speaker 1: 2:47

Now let me ask you a question what are your most bothersome non-motor symptoms and how do they affect you on a daily basis? Now I'd love to hear your thoughts and you can either hit the text me in the podcast description or drop me an email at cacusty at liveparkinsonscom. Or drop me an email at cacusty at liveparkinsonscom. Now my top three, starting with number one, are sleep issues, followed closely by cognitive issues, memory and organizing, and fatigue. So what are non-motor symptoms, why do we get them and how do they affect us? All right, let's break down the question into different parts and we'll start off with.

Speaker 1: 3:23

What are non-motor symptoms of Parkinson's? Non-motor symptoms of Parkinson's encompass a wide array of symptoms that do not primarily affect your movement. According to the article Parkinson's Disease by the Cleveland Clinic, they state that in years past, experts believed non-motor symptoms were risk factors for this disease when seen before motor symptoms. However, there is a growing amount of evidence that these symptoms can appear in the earliest stages of this disease. That means these symptoms might be warning signs that start years or even decades before motor symptoms. They note that non-motor symptoms with potential warning symptoms include autonomic nervous system symptoms those are the ones that you don't consciously control and include orthostatic hypertension or low blood pressure when standing up, constipation, urinary incontinence and sexual dysfunction, depression, loss of sense of smell or anosmia, sleep problems, including rapid eye movement, behavior disorder, restless leg syndrome and then trouble thinking and focusing. So it's important to note that non-motor symptoms can appear to any stage of the disease, and sometimes even years before motor symptoms are noticeable.

Speaker 1: 4:39

Now let's look at the second part of my question why do we get motor symptoms? Basically, the underlying cause of non-motor symptoms in Parkinson's is the same as for motor symptoms it's the degeneration and loss of nerve cells in the brain. Now it's not just the dopamine-producing neurons in the substantia nigra of the brain that are affected. Now, when this area of the brain begins to have dopamine-producing neurons die off, motor symptoms of Parkinson's can become noticeable. The accumulation of a protein called alpha-synuclein into Lewy bodies extend to other regions of the brain and the peripheral nervous system, which damages and disrupts various neurotransmitter systems and neural pathways, leading to a wide range of non-motor symptoms.

Speaker 1: 5:26

So let's look at some of the key causes of non-motor symptoms, starting with dopamine deficiency. Now, besides its role in movement, dopamine also plays a part in our mood, motivation and recognition, and cognition as well. Now, the loss of dopamine-producing cells can contribute to depression, anxiety and apathy. Next up is neurotransmitter imbalance. Parkinson's affects other crucial neurotransmitters like norepinephrine, which is involved in attention and blood pressure, serotonin, which is involved in mood, sleep and appetite, and acetylcholine, which is involved in memory and learning. Now, these disruptions in neurotransmitters contribute significantly to non-motor symptoms. And then we have autonomic nervous system dysfunction. Now, the autonomic nervous system controls involuntary bodily functions like our blood pressure, our heart rate, digestion, bladder function and sweating. Lewy body accumulation in this system can lead to issues like constipation, orthostatic hypertension, urinary problems and one of my personal favorites excessive sweating. Another key cause is Lewy body accumulation in other areas of the brain. The spread of Lewy bodies to areas of the brain like the limbic system involved in our emotions, the cortex involved in cognition and the olfactory bulb involved in sense of smell directly contributes to symptoms like mood disorders, cognitive impairment and loss of smell.

Speaker 1: 7:00

Okay, we've answered the second part of the question. Why do we get them? Now let's address the last part of the question. How do non-motor symptoms affect a person with Parkinson's daily life, because ultimately, that's what we're most concerned with. Am I right Now if, living with Parkinson's, you know that non-motor symptoms can have a profound impact on nearly every aspect of a person's daily life? Oftentimes they're invisible to other people.

Speaker 1: 7:27

Now let's look at some of the categories of non-motor symptoms that can have a huge impact on our daily life, and we'll be going into detail on these in just a little bit, but here's an overview. We'll start off with cognitive impairment, memory and attention, and then we'll talk about mood disorders, depression, anxiety and apathy, sleep disturbances one of my favorites Insomnia, rem sleep behavior disorder and then we'll talk about some sensory issues like loss of smell and pain, and then autonomic dysfunction. We'll talk about constipation, bladder issues and blood pressure changes. Others include fatigue, speech and swallowing changes. Now it's interesting to note that studies show that over 90% of people with Parkinson's experience at least one non-motor symptom. Now, I guess the statistic challenges the misconception that Parkinson's is just a movement disorder. All right, we've answered the question what are non-motor symptoms, why do we get them and how do they affect us?

Speaker 1: 8:26

Now let's switch gears and look at the key non-motor symptom areas in more detail, and let's lead it off with ones that I have quite a bit of personal experience with, and that is mood and mind. Now, there are a number of non-motor symptoms that fall under this category, but let's start out with the two biggies anxiety and depression. So how prevalent are they? Well, according to the article Depression by the Parkinson's Foundation, 50% of people with PD will experience some form of depression and 40% of people with Parkinson's will experience an anxiety disorder. I mean that's pretty substantial. People with Parkinson's will experience an anxiety disorder. I mean that's pretty substantial. Some studies suggest that a third of PD patients suffer from an anxiety disorder at any given time. Now, I know personally, I've struggled with anxiety and panic attacks and I've used cognitive behavioral therapy to finally overcome experiencing panic attacks. Now let's look at both of these in a little bit more detail, because they're so common and have a significant impact on our quality of life.

Speaker 1: 9:32

And let's start with depression. Now, what is depression and what are the signs, so that we might know if we are experiencing depression? Now let's look at some of the warning signs or signals for depression. Now, I did want to mention that it's important to recognize that depression and Parkinson's it's not simply a reaction to the challenges of living with a chronic illness. It's often the direct consequence of the same underlying brain changes that cause the Parkinson's motor symptoms. The degeneration of dopamine, serotonin and norepinephrine cells can directly impact mood regulation. Okay, now let's look at some of the common signs of depression in people with Parkinson's.

Speaker 1: 10:10

Now I want to start out with emotional and psychological symptoms, and these include persistent sadness or low mood, and that can include a feeling of being down, tearful and empty, and that can last for most of a day, nearly every day, for at least two weeks. Loss of interest or pleasure, a lack of enjoyment in activities that you once enjoyed, like your hobbies, social interactions with friends and family, feelings of guilt, worthlessness or hopelessness, negative self-perception and a bleak outlook of the future. So, in a sense, you have nothing to look forward to. Self-criticism, judging yourself and focusing on your personal failures, anxiety and worry, excessive nervousness, fear, unease, which can manifest as panic attacks yes, I've been in that position before, and it's really not a great place to be. Irritability or agitation, feeling easily frustrated or on edge, thoughts of death or suicide. Now, this it's important to note that this requires immediate medical attention. So if you know someone showing this sign, get them the medical and psychological help they need immediately.

Speaker 1: 11:22

Then there are also physical and behavioral symptoms. There's changes in appetite or weight, so you can have either significant weight loss or weight gain without trying, or noticeable weight gain. Sleep disturbances difficulty falling or staying asleep or sleeping too much or early morning awakening. Is also common. Fatigue and loss of energy and slowed thinking and concentration, or a few others. Now I don't know if you notice, but my guess is most, or every time you go to see the neurologist or movement disorder specialist. If you notice, a lot of times they give you a questionnaire and a number of questions relate to these symptoms of depression and the scores from these questions help them identify if you are experiencing depression so that you can get the help you need to treat the underlying depression. Now I recently completed my 41st study visit on the Michael J Fox Foundation study and as part of the non-motor symptom questionnaires, there are a number of questions relating to depression and anxiety, so they're trying to collect additional data on prevalence of depression as a non-motor symptom.

Speaker 1: 12:28

Now the good thing is that depression is treatable and using a combination approach to treatment often works the best. Treatment strategies can include medications like antidepressants and some of the more common classes of antidepressants include selective serotonin reuptake inhibitors, or SSRIs, and they're often the first line of treatment due to their general favorable side effect profile. To their general favorable side effect profile. Examples would include Zoloft, paxil, selexa and Lexapro. Other classes of medications include serotonin norepinephrine reuptake inhibitors, which include Effexor and Cymbalta. Other antidepressants include Welbutrin and serotonin dopamine uptake reinhibitor, which includes Remeron, which affects serotonin, may also be used. Now, I want to stress that this information is for educational purposes only and it's not treatment advice. Please discuss any issues or signs of depression with your healthcare professional so that they can develop a treatment plan that is right for you.

Speaker 1: 13:29

Another treatment that is often used by itself or in combination with other therapies is psychotherapy or talk therapy. Now this can include cognitive behavioral therapy, which helps you identify and change negative thought patterns and behaviors that can contribute to anxiety and depression. Now, this was a huge life changer for me. I used cognitive behavioral therapy to overcome anxiety, panic attacks and depression issues. Cognitive behavioral therapy to overcome anxiety, panic attacks and depression issues. Now, if you want to learn more about cognitive behavioral therapy, listen to my podcast titled Parkinson's and Anxiety how Cognitive Behavioral Therapy Can Take Back Control. Now I share my personal journey with how CBT was a life changer for me. Now, two additional types of psychotherapy include interpersonal therapy, or IPT, which focuses on improving relationships and social interactions, which can positively impact your mood. And then supportive counseling gives you a safe place to discuss your feelings and challenges and get emotional support and guidance.

Speaker 1: 14:29

And finally, one of the tools that can be used to treat depression and anxiety is, yes, your favorite of mine exercise and physical activity. Yes, I said it exercise. Regular exercise has been shown to have positive effects on mood and can alleviate depressive symptoms. Activities like tai chi, walking, swimming and yoga can be beneficial. So lace up those sneakers, go for a walk and enjoy nature if you're starting to feel down. Now it's crucial for people with Parkinson's and their caregivers to be aware of the signs of depression and mood changes and share them with your neurologist or your primary care physician. Early diagnosis and treatment can significantly improve your quality of life.

Speaker 1: 15:13

Anxiety and depression often go hand in hand, and a number of the symptoms of depression are often related to underlying anxiety. Now let's look at apathy, which is another common mood and mind non-motor symptom. Look, let's be honest. We all feel apathy, probably at one point, especially when we don't want to do something Like. For me, it would be if someone said, let's go to the opera. Now, I'm not against the opera, but it's just not for me, just like shopping. When my wife says, hey, let's go to the stores on the way home, I get very apathetic and don't want to do it. Now she learned just to go on her own, which number one she enjoys more, especially with me whining about going shopping. But what is apathy in Parkinson's?

Speaker 1: 15:59

Apathy in Parkinson's is characterized by a lack of motivation, interest and enthusiasm for activities that you once enjoyed. Now, in my case, if I suddenly stopped wanting to play guitar or go fly fishing or said that I wasn't interested, that would be a sign of apathy. Now, the shopping and opera examples that I gave were things that I just wasn't interested in and so I was more like getting out of doing it than it was apathy. So the difference is that apathy is the reduction and is often goal-oriented behaviors and can show itself in several ways, including reduced initiative. So you have difficulty starting tasks or activities without being prompted to do so. Loss of interest not only wanting to participate in hobbies and social events that you typically like to do, lack of concern. You're really indifferent to personal matters or feelings of others. You just kind of I just don't care. And then cognitive apathy Reduced curiosity and interest in learning new things. Now, this would be something that would be obvious about me, because I love learning new things. So people with apathy may appear passive, withdrawn and less engaged in their daily activities. They might spend more time doing nothing or engaging in passive activities like just wanting to watch TV. Now, if you notice a friend or family member who is showing these signs, it's important to let your doctor know so that they can develop a treatment plan to help them.

Speaker 1: 17:31

All right, let's move on now to our next category of non-motor symptoms, which is sleep and senses, and let's lead it off with common sleep disorders, because a large percentage 75% of people with Parkinson's experience sleep-related symptoms. According to the article, studies show multiple sleep problems are common in early Parkinson's. By the Parkinson's Foundation, sleep issues can have a huge impact on the quality of life. The article also states that this new study data shows that the most common sleep issues associated with Parkinson's were insomnia, which were 41% of patients that participated in this study, followed by REM sleep behavior disorder, or RBD and excessive daytime sleepiness both 25% of the participants that were involved in the study and then restless leg syndrome 16% of the participants. Now let's look at some of the most common sleep issues and their causes and then give you some strategies to manage them. And let's start with sleep issues or disturbances that most have experienced, and that was the number one sleep issue in the Parkinson's Foundation article, and that is insomnia.

Speaker 1: 18:40

Insomnia means that you have difficulty falling or staying asleep. Now, some causes of insomnia are Parkinson's-related brain changes like affecting serotonin levels, tremor pain, difficulty turning in bed and vivid dreams, which can often be caused by medication. And then another is frequent nighttime urination, which can cause sleep fragmentation, where you have to keep getting up multiple times and where you have periods of sleep that are broken because you're getting up and trying to fall back to sleep. Also, anxiety and depression and medication changes affect the brain sleep-wake cycle. All right, now that we know what insomnia is and some common causes, let's look at some strategies to help you manage it, and we'll start it off with optimizing our PD medication. Ask your doctor if adjusting medication schedules can reduce your nighttime motor symptoms, because sometimes you know you have trouble turning over in bed or you have tremor that wakes you up. So if you can change your medication and timing, that may be able to help.

Speaker 1: 19:45

Good sleep hygiene, which is next on the list. Good sleep hygiene includes establishing a regular sleep schedule. Yes, even on weekends and vacation, you want to try to make sure that you go to bed and get up at the same time. You want to create a relaxing bedtime routine, so like a warm bath, breathing, listening to calming music. But you should try to limit your computer, phone and tablet use to at least a minimum of an hour before bed, because the light can impact your sleep-wake cycle and then ensure your bedroom is dark, quiet and cool.

Speaker 1: 20:18

You want to avoid caffeine and alcohol close to bedtime. Now, I remember a time when I went to my friend Scott's house a couple years ago and we were playing board games and we were having some soda and snacks, and I didn't realize the soda what I like to call high test because it contained a lot of caffeine. So I drank probably five or six glasses of soda and, needless to say, it took me about three hours to finally fall asleep and I kept waking up all night. So to me that was a good life lesson, chris don't drink a lot of caffeine late in the day or before bed, unless I want to be up all night. And then you want to limit daytime naps, especially long ones, and you don't want to take a nap too late in the day, because that's going to affect your sleep as well. Now I actually prefer and my body seems to naturally do this is the 20 to 30 minute power naps. I wake up feeling refreshed and not groggy like after I would take a long nap. Other strategies include cognitive behavioral therapy, which we've discussed.

Speaker 1: 21:20

Medications, and some of them should be used with caution and they need to be used under medical supervision. Sleep aids, short-term use of medications, but then there's potential side effects depending on how they're used, and you should make sure that you review those with your doctor as well. Melatonin, which is a natural hormone that regulates the sleep-wake cycles, may be helpful for some people. Now me personally. I didn't really have much success with it.

Speaker 1: 21:50

Next up is REM sleep behavior disorder, or RBD. Next up is REM sleep behavior disorder, or RBD. Some common causes of RBD include neurodegeneration of the brainstem, which specifically affects the areas that normally paralyze your muscles during REM sleep, and there's a strong association with alpha-synuclein clumping, which is highly prevalent in PD and Lewy body dementia. Symptoms of REM sleep disorder include acting out your dreams during REM sleep, which can include yelling, shouting, punching, kicking and even falling out of bed. Now, most of the time, the person who's experiencing RBD doesn't really notice that they're doing it, but their bed partner will, and they need to bring it up for discussion. Now some management strategies for REM sleep behavior disorder include bedroom safety. A lot of people need to pad the floor around the bed in case they fall out of bed when they're flanneling around. And then you want to remove sharp objects or sharp-edged furniture from the bedside. And one other thing is consider lowering the bed in case you fall out. Medications can sometimes be used under the supervision of your doctor, and then melatonin is the first-line treatment and can be effective in helping to reduce some RBD behaviors. And then, finally, open communication with your bed partner so they don't get injured or traumatized if you're yelling or flailing around in your sleep.

Speaker 1: 23:20

Next up on the docket is restless leg syndrome and periodic limb movements of sleep. Now, some common causes include iron deficiency, which is more common in restless leg, dopamine dysfunction, restless leg and PLMS, which is the periodic limb movements of sleep may include issues with dopamine signaling. Peripheral neuropathy, which diabetics may experience, is nerve damage which contribute to RLS. Symptoms of RLS include an irresistible urge to move the legs, often accompanied by uncomfortable sensations like tingling, crawling or aching that worsen during rest and at night and are relieved when you move your legs. Now PLMS is repetitive, involuntary limb movements, usually your legs during sleep, which can disrupt sleep quality for both the individual and the bed partner. Now management strategies include iron supplementation, so if you're iron deficient they could give you iron supplements. Dopamine agonists medications like paramopexol and ropinerol, often used to treat PD motor symptoms, can be effective for RLS. An agapapentin or Neurotin can help with RLS, especially if pain is involved, and leg massages may help provide some relief for restless leg syndrome.

Speaker 1: 24:41

And then next up is one I experienced and have a love-hate relationship with, and that's excessive daytime sleepiness. The causes include fragmented nighttime sleep due to insomnia, could be restless leg syndrome, rbd or just nocturia, where you have frequent nighttime urination, where you have to keep getting up, and then just Parkinson's itself. The neurodegenerative process can involve the regions in the brain involved in wakefulness. Medication side effects in some PD medications can cause drowsiness and underlying sleep disorders like sleep apnea can also play a role. Symptoms include feeling excessively tired during the day, difficulty staying awake and unintentional napping. Some strategies for managing excessive daytime sleepiness Optimize nighttime sleep, if possible, by addressing insomnia, rbd and restless leg, and review medications with your doctor. Some of the medications might be a major contributor to your daytime sleepiness.

Speaker 1: 25:48

And then you want to schedule short and what I like to call power naps, which are the 20 to 30 minute type, and then maintaining a good, consistent sleep schedule, and then rule out any other underlying conditions like sleep apnea or medical issues. Now I've had problems with excessive daytime sleepiness when I was taking a dopamine agonist and I would be trying to read something, or I was typing on the computer and I would nod off and my finger would continue holding down the computer key and I would, you know, pop up 15 or 20 seconds later and I would have a paragraph of the letter I or the letter Q, whatever it would happen to be, and then I'd have to go back and delete all what I was typing. And a few times when I was reading, I almost hit myself in the head with the iPad when I started to nod off. And then there's also been times where I've been reading and I've either dropped the book in the middle of what I was reading or sometimes, when I was looking at the music for the guitar, I would just nod off for a second and drop the pick. So a change in medication really helped me out.

Speaker 1: 26:51

Now our final sleep issue is which I also love is sleep apnea, and the most common being obstructive sleep apnea, where relaxation of the throat muscles leads to airway blockage, and it can be worsened by obesity and certain anatomical features. Symptoms include loud snoring, gasping for air during sleep and pauses in breathing observed by a bed partner, and it can lead to daytime sleepiness and morning headaches. Now let's look at some strategies to manage sleep apnea, and the first one is to use a CPAP machine, which is a continuous positive airway pressure machine, which is the standard treatment for treating especially obstructive sleep apnea, and it includes wearing a mask that delivers a pressurized air to keep your airway open, and I personally use a CPAP machine and I sleep so much better and I don't snore, which I know my wife loves in oral appliances, and they can help by repositioning your jaw to maintain an open airway in mild to moderate cases of obstructive sleep apnea. And then weight loss is another thing that you can do to help improve your symptoms. So as we wrap up sleep issues, it's important to keep your doctor informed so they can help you get the sleep that you need Now. In my case, it took a referral to the sleep specialist to really help me improve my quality and quantity of sleep, because sleep is so important. So make sure that you work through your sleep issues so that you can get the proper rest and that you need.

Speaker 1: 28:25

All right, let's look at another common sleep and senses non-motor symptom, which is loss of smell or nosemia. Estimates vary across studies, but many suggest that over 90% of people with PD have a reduced sense of smell. Some studies even report the prevalence as high as 95% or more. Loss of smell is important because it's often an early symptom of Parkinson's and can precede motor symptoms by years and sometimes even decades. Now it's considered a reliable marker of the disease and is even included as supportive criteria in the clinical diagnosis of Parkinson's.

Speaker 1: 29:03

Now, as we all know, the sense of smell plays a crucial role in the perception of our taste and flavor. Now, interestingly, our taste buds on the tongue can only really detect five basic tastes sweet, sour, salty, bitter and savory. It's our olfactory system, which includes breathing and smelling, that allows us to distinguish the complex and nuanced flavors of different foods and drinks. Loss of smell can affect our quality of life because it can reduce our flavor perception and it also decreases the enjoyment of eating, which can have a direct impact on our appetite. So if we can't smell the food and it doesn't give us enjoyment, we might say what do I really want to eat for anyway? And it doesn't give us enjoyment, we might say what do I really want to eat for anyway? The problem with that, then, is it can lead to inadequate nutrition and weight changes. Now, recognizing this common non-motor symptom plays an important role not only in diagnosis, but how it can impact your quality of life through diet and nutrition.

Speaker 1: 30:07

All right, now let's look at the last category of non-motor symptoms that we'll be covering in this podcast, and I like to call these the body's inner workings. Now we'll look at three different non-motor symptoms autonomic dysfunction, bladder problems and orthostatic hypertension. And let's start off with autonomic dysfunction. Now you may be like me and are thinking what in the world is autonomic dysfunction, which is also known as autonomic neuropathy.

Speaker 1: 30:31

Autonomic dysfunction occurs when the autonomic nervous system doesn't work properly. Okay, that's great, but what's the autonomic nervous system? Well, it's a network of nerves that controls our involuntary bodily functions, meaning ones that you don't typically, you don't have to think about Now. These include heart rate, blood pressure digestion, body temperature regulation, sweating, bladder function and pupil dilation. Now, when the autonomic nervous system is damaged or malfunctioned, these automated processes can be disrupted. Now I know, for example, I have trouble with my body temperature, especially when I'm outside and it gets really cold out. It never used to bother me. Now, when it's really cold out, I often start to shake and shiver and have trouble getting warm, and then I also sweat a ton more than I did before Parkinson's too. So I have trouble with both hot and cold temperature. So I'm aware of some of the changes when you have autonomic nervous system disruptions.

Speaker 1: 31:40

So how does autonomic dysfunction relate to non-motor symptoms? In Parkinson's? Well, the same underlying neurodegenerative process that affects dopamine-producing neurons and leads to motor symptoms also impacts other areas of the brain involving the autonomic nervous system. And then you have the accumulation of the alpha-synuclein protein in Lewy bodies is believed to contribute to the damage of the cells within the autonomic nervous system, damage of the cells within the autonomic nervous system. As a result, autonomic dysfunction is very a common cause of many non-motor symptoms.

Speaker 1: 32:16

Now let's look at how the autonomic dysfunction can manifest as various non-motor symptoms in Parkinson's, and we'll start off with cardiovascular issues like orthostatic hypertension, and that's where you have a significant drop in your blood pressure when you stand up and that can cause dizziness and lightheadedness, and the issue with that is it can cause you to fall and hurt yourself. Gastrointestinal problems are another area that are affected by autonomic dysfunction and can include non-motor symptoms like constipation, gastroparesis, which is delayed emptying of your stomach, which can cause nausea, vomiting or just a sense of fullness, difficulty swallowing or dysphagia and drooling, and that's from excessive saliva buildup. Then you have urinary issues, which are another area that are affected and include urinary frequency and urgency, nocturia, which is the frequent nighttime urination, urinary incontinence. And another area we often don't think about is thermoregulation, which can include sweating and can include excessive sweating, which is hyperhidrosis, including nighttime sweats, and then you can have hot and cold intolerance, so that's difficulty regulating your body temperature in response to environmental changes. Now, if you have Parkinson's, how many of these non-motor symptoms have you experienced. Now. I can personally attest to experiencing several of these during my Parkinson's journey. So, as you can see, autonomic dysfunction can have a significant impact on your quality of life. That's why it's so important to let your doctor know if you're experiencing any of these non-motor symptoms so they can help you get the treatment you need to manage them so that you can live your best life. All right, those are the three categories of non-motor symptoms that we wanted to discuss, and that was mood and mind, sleep and senses and the body's inner workings.

Speaker 1: 34:18

Now let's touch on why recognizing non-motor symptoms really matters in your Parkinson's journey. First, letting your doctor know about your non-motor symptoms can improve the management and treatment of the symptoms, because if they don't know about it, they can't treat it, and sometimes non-motor symptoms can be an early indicator of PD. So by recognizing these early signs, that can lead to an earlier diagnosis, which can then lead to earlier treatment intervention. Also, it allows for targeted treatment. We often take dopaminergic medications for our motor symptoms because they're effective.

Speaker 1: 34:52

Non-motor symptoms, however, may require a different approach based on the specific non-motor symptom. For example, antidepressants would be used for depression and anxiety, sleep aids for insomnia, and then there are certain other medications that are used for autonomic dysfunction. Finally, your doctor can make medication adjustments, because some PD medications can exacerbate non-motor symptoms. And then another reason to inform your doctor is because of the impact non-motor symptoms can have on your quality of life, because sometimes non-motor symptoms like fatigue, pain, depression and anxiety and cognitive issues can be more debilitating and impact your quality of life more than the motor symptoms that you experience. So when you let your doctor know about these non-motor symptoms, they can actively manage them and help you live your best life by helping you maintain your independence. Social interaction, if left untreated, can lead to social isolation and then finally allow you to enjoy your life by not having motor symptoms affect your daily life and activities. So be your own advocate, along with your caregiver, to share these hidden battles with your doctor, so that they can help you manage the non-motor symptoms and you can continue to do the things that you enjoy.

Speaker 1: 36:05

So, as we wrap up our discussion on non-motor symptoms, one of the first things I want to reinforce is to keep a positive outlook, because non-motor symptoms are challenging, but they can be managed. Now, as a call to action, I would encourage you to learn more about your specific non-motor symptoms so that you can share them with your caregiver and your healthcare professional to get the treatment you need to live your best life. And I wanted to provide you with some resources for learning more about non-motor symptoms and their treatments. Now I recommend visiting the following websites the Parkinson's Foundation at parkinsonsorg. The Michael J Fox Foundation, and that's michaeljfoxorg. The Davis Phinney Foundation at davisfinney, and that's p-h--N-N-E-Y foundationorg. And in the American Parkinson's Disease Association, theapdaorg. And then myparkinsonsteamcom offers insights into seven common non-motor symptoms, along with treatment options along with treatment options. And then, finally, frontiers in Neurology has a research collection exploring, diagnosing and treating both motor and non-motor symptoms. So all those would be good resources.

Speaker 1: 37:18

And that brings us to a close of another important conversation here on the podcast. Now we've journeyed beyond the tremor today, shining the light on the hidden world of non-motor symptoms and Parkinson's. Now I hope this discussion has empowered you to recognize the importance of sharing these non-motor symptoms with your healthcare provider and also understand that you're not alone in this journey. Your journey with Parkinson's is unique, and staying informed and proactive is key to navigating its complexities. That's why I encourage you to take the next step in understanding and support, and you can do this by heading over to libparkinsonscom. There you can easily subscribe to the free monthly newsletter, which is packed with the latest insights, practical tips and inspiring stories to help you live your best life with Parkinson's. And while you're on the site, be sure to explore the free resources and articles designed to give you actionable information and support.

Speaker 1: 38:15

And then, next, if you're ready to take a more active role in building a strong and effective care network, I highly recommend getting your copy of our Building your Care Team Resource Guide and Workbook. This comprehensive tool was designed to empower you to identify the right professionals, ask the right questions and ultimately improve your quality of care and support system. You'll find a direct link to this valuable resource at libparkinsonscom. And then, finally, if you find the information and support we provide through this podcast and want to help us continue bringing important conversations, consider supporting the podcast through our Ko-fi page, which is ko-ficom slash liveparkinsons. And thanks again for joining us today. Remember, understanding and addressing all aspects of Parkinson's, both visible and hidden, is essential for living a more improved life. So until next time, stay healthy, stay strong and live your best life with Parkinson's. And again, thanks for joining. I really appreciate it.