Living Well with Parkinson's: What Patients and Caregivers Need to Know in 2025

This episode of Wellness Connection MD celebrates Parkinson’s Disease Awareness Month. Dr. McMinn welcomes two extraordinary guests to shine a compassionate and informed light on Parkinson’s disease. Nurse Practitioner Laura Lieb, a Parkinson’s specialist at UAB and community coordinator for the American Parkinson's Disease Association, joins the conversation alongside caregiver, support group leader, and former Care Navigator for the Parkinson's Association of Alabama, Cindy McMinn, NP. Together, they explore the evolving science of Parkinson's and discuss early warning signs, symptoms, gut-brain connections, root causes, cutting-edge therapies, and the lived experience of caregiving. From practical lifestyle tips to insights on neuroinflammation and support networks, this episode is a must-listen for anyone impacted by Parkinson’s Disease. Whether you're a patient, provider, or care partner, you’ll find cutting-edge information, clarity, resources, and hope.

Want more? Visit McMinnMD.com for links, bios, and a complete resource guide.

Transcript

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Introduction to Parkinson's Disease Month

Speaker 1 0:01

Welcome to the Wellness Connection MD podcast . Today we present to you the first in a two-part series on Parkinson's disease . Neurologic diseases are the number one cause of illness worldwide , and Parkinson's is the fastest-growing neurologic disease . So it's high time we take a deep dive into this important subject , especially since we are in the midst of Parkinson's Disease Awareness Month . In part one , our special guests present to you a thorough breakdown of strategies and resources available to patients and caregivers faced with Parkinson's . In forthcoming part two , we will circle back around to talk about some evidence-based functional and integrative strategies that may be useful to complement traditional care . This is a complicated subject and we cover a lot of ground , but at the end of the journey I hope that you will be rewarded with an excellent summary of Parkinson's disease , both from a conventional and a functional , integrative point of view . Enjoy the show .

Speaker 2 0:54

Welcome to the Wellness Connection MD podcast with Dr McMinn and Coach Lindsay , where we bring you the latest up-to-date , evidence-based information on a wide variety of health and wellness topics , along with practical take-home solutions . Dr McMinn is an integrated and functional MD and Lindsay Matthews is a registered nurse and IIN-certified health coach . Together , our goal is to help you optimize your health and wellness in mind , body and spirit . To see a list of all of our podcasts , visit mcmdcom and to stay up to date on the latest topics , be sure to subscribe to our podcast on your favorite podcast player so that you'll be notified when future episodes come out . The discussions contained in this podcast are for educational purposes only and are not intended to diagnose or treat any disease . Please do not apply any of this information without approval from your personal doctor . And now on to the show with Dr McMinn and Coach Lindsey .

Speaker 1 1:50

Hello and welcome to the Wellness Connection MD Podcast with Dr McMinn , the evidence-based podcast on all things wellness , where we bring to you honest , commercial-free , unbiased , up-to-date and evidence-based information , along with practical solutions in order to empower you to overcome your healthcare challenges and to optimize your wellness of mind , body and spirit and to become a great captain of your ship when it comes to your health and wellness . Coach Lindsey has a much-deserved day off today , but I'm excited to have two special guests on the show today to talk about a very important subject and one that has some personal significance to me , and that is Parkinson's disease . My beloved father had Parkinson's , so I hope that we can help others patients and caregivers who are going through what my dad and my family went through . We can all learn from each other's experiences , and y'all can learn from our mistakes and we certainly made a few of them along the way . But before we get into it , we have just a couple of brief housekeeping duties to take care of .

Speaker 1 2:40

Our podcast remains commercial-free . However , it does cost us money to produce these podcasts and heaven knows we spend a lot of time doing our research so we can bring you up-to-date , accurate , unbiased information , so consider making a contribution to help us keep this going and keep it coming to you . There are a couple of ways you can contribute . First , I'm not asking you to buy anything that you don't already get , but if you do buy nutritional supplements , then consider purchasing supplements from our Fullscript dispensary at a 10% discount . You can see the link to Fullscript in the show notes or go to mcminnmdcom , and the link will also be there at the bottom of the homepage under Helpful Links . It's quite simple Just click on the link and they'll guide you through the process . It's a classic win-win you get high quality , physician-grade supplements at a discount and we get your support for the show , for which we are very grateful . You can also make a contribution to the show directly via credit card or by PayPal at the Support the Show link , which is also in the show notes . Also , please don't forget to subscribe to the show and tell your friends and family about us so that we can keep it growing . We thank you so much .

Speaker 1 3:39

And now on to the show . Let me start by introducing our esteemed guests First . We are so grateful to have with us today Ms Laura Lieb . She's an adult geriatric nurse practitioner at the Department of Neurology , movement Disorder Division at UAB , which is the University of Alabama at Birmingham , go Blazers . She works there as a research clinical coordinator , clinical nurse and as the Parkinson's community coordinator for the American Parkinson's Disease Association . So Laura works every day in the trenches taking care of folks with Parkinson's disease . She's also up to date on all of the latest research and she is out in the community helping put together the village of providers and caregivers taking care of these folks with Parkinson's .

Speaker 1 4:17

Our other guest happens to be my beloved sister Cindy McMinn . Now , I'm not denying there's a bit of nepotism going on here , but in all honesty she really does deserve to be on the show . Cindy valiantly served our country as an Army nurse and retired as a lieutenant colonel in the year 2000 . So every time I see her she wants me to salute her . But I got to tell you it's just not going to happen .

Speaker 1 4:35

I'm just saying I successfully pestered Cindy into coming to work for us at the McMinn Clinic , a functional and integrated medical clinic here in Birmingham , alabama , and while she was there our father was diagnosed with Parkinson's and this drastically changed the course of her career and her life . Being the natural caregiver that she is , she began to focus on Parkinson's and was hired as the first care navigator for the Parkinson's Association of Alabama . So Cindy has been there and done that as a direct caregiver , as a medical professional and also as an active leader of a support group . She has so much knowledge , experience and passion so we're excited to pick her brains on the show today . For more interesting information on our two guests , check out wwwmcminnmdcom

Understanding Parkinson's Disease Fundamentals

Speaker 1 5:14

and look under guest bios . There you'll see some pictures and some interesting tidbits about both of our guests . So , without further ado , a warm welcome to you both , laura and Cindy . Thank you both for joining us today on the Wellness Connection MD podcast . We're thrilled to have you on the show today to discuss Parkinson's disease , the fastest growing neurologic disease in the world .

Speaker 3 5:33

Well , it's good to be here .

Speaker 1 5:40

Thank you for having me . I'm out that this is Parkinson's Disease Awareness Month , so it's particularly gratifying to me that y'all were able to come over and join me today on the podcast to shed some light on Parkinson's and to celebrate the caregivers , the medical professionals and , most importantly , the patients who are associated with Parkinson's disease .

Speaker 3 5:56

Yeah , this is an important time . I think that understanding and awareness of Parkinson's disease is growing . We know that there's an increase in the incidence and that awareness helps . Hopefully people get in connection with more programs that can help them and their family members live well with Parkinson's disease .

Speaker 1 6:19

Before we get going . I hope y'all can clarify something for me . I've always used the term caregiver . However , recently I heard someone use the term care partner . I certainly want to try to use the right term . So are both terms acceptable , or has the term care partner become the preferable term to use in this situation ?

Speaker 3 6:35

I think that the term care partner is being utilized more frequently and that it's a relationship between two people coming together , joining forces to help live better , and doing this in a team manner . Caregiver may not quite embody that concept , although I think that both terms are used and this may just be an individual preference . Care partner seems to be utilized a little bit more frequently in recent years , probably for those reasons .

Speaker 1 7:14

Well , I will try to make that transition , but if I goop up and say caregiver , then please forgive me . But , as I said earlier , my dad had Parkinson's and even though I was a doctor at that time and Cindy was a nurse practitioner , I have to admit we didn't always completely get it . For instance , we didn't understand that many of my dad's other symptoms besides the classic Parkinson's symptoms , like tremor and slow gait , like constipation , for instance , or loss of smell and declining mental status , were related to his Parkinson's disease and we had no clue about caregiving resources . So , looking back on it , we made a few mistakes and we could do a better job if we had a do-over . But I can attest that my dad was always surrounded by love , especially from my mom and from Cindy , and that meant the world to him . So also , we learned a lot along the way and we're grateful to have this opportunity to share with others so that we can pay it forward to other patients and care partners who might be going through a similar situation .

Speaker 4 8:08

Yeah , it was a difficult time when Paul got diagnosed with Parkinson's and I look back on that and am truly astounded , even today , at how little we knew and how we were simply reacting rather than being proactive , because we didn't know who to call , what to do , how to respond , what his symptoms would be . So we were completely taken aback by it all and that's what prompted me to go into working with Parkinson's .

Speaker 1 8:34

Quite frankly , I think most families are in the same situation , and that's kind of why we're doing the podcast today . So let's start with the basics and not assume that everybody knows that much about Parkinson's , anyway . So let's start with the basics and not assume that everybody knows that much about Parkinson's , and so if y'all could just please describe Parkinson's for me today and exactly what is Parkinson's ?

Speaker 3 8:56

Parkinson's disease is considered a neurodegenerative disorder . It's characterized primarily by a loss of dopamine cells in an area of the midbrain called the substantia nigra , and one of the most important functions of the substantia nigra is to do with motor control movements , but it also is involved in eye movements , emotions , cognition and even learning . Usually the symptoms initially start on one side . Oftentimes it can be a motor symptom . That's first noted .

Speaker 3 9:31

The primary motor symptom or movement symptom that is needed to even consider Parkinson's disease is slowness , and that term is often known as Bradykinesia when you're talking to a healthcare provider . But slowness and then other movement or motor symptoms include tremor , rigidity and postural changes and changes in gait and balance . That's one component , and another element that's very important which you touched on a little bit earlier is this non-movement or non-motor symptoms that really were not as well described in some of the earlier literature and probably have become more and more emphasized as we understand more about Parkinson's disease , really in the last about 25 , 30 years . But that's kind of a basic understanding of Parkinson's disease . It is a complex disorder in which we're learning more and more about . For example , we don't quite know what causes Parkinson's disease , and there's multiple other things we're still striving to gain knowledge in regarding Parkinson's .

Speaker 1 10:42

So is our understanding of Parkinson's still evolving ?

Speaker 3 10:46

Yes , I would say that probably almost on a daily basis . You can find something to learn new about Parkinson's , whether it's a research article or the person living with Parkinson's learning about themselves or the care partner . But this concept of Parkinson's disease being just one solitary condition doesn't quite ring true when we see such uniqueness between each individual . Also , there are I should probably take a step back and say there's a term called Parkinsonism , and that's what we call kind of like an umbrella term , and Parkinson's disease is the most common Parkinsonism . Other conditions might include multiple system atrophy and other conditions that have some similarities but are very unique diseases . We also see what we call subtypes or different variants of Parkinson's disease , and so there are debates and research going on about . Are there actually a few other disorders ? We're still calling them Parkinson's disease , so this is an ongoing area for us to learn about .

Speaker 1 12:09

So can we kind of think of it like we do autism , where it's more of a spectrum disorder and there are different syndromes and that the subtypes .

Speaker 3 12:24

We do have some terminology for the subtypes of Parkinson's , for example , tremor , predominant Parkinson's disease . Obviously , it's kind of clarifying what it is and that you have mainly a tremor , and then we have people with Parkinson's disease that have mainly akinetic or a lot of slowness and stiffness , and so I could you know , see , people use that analogy of a spectrum , but probably a component of this that we'll be discussing Cindy and I have brought this up a lot is just the uniqueness that each person has with Parkinson's , and there's a statement that probably rings true for many people out there is once you meet someone with Parkinson's , you've met one person with Parkinson's . So understanding that there is a spectrum of symptoms and that each person is unique is important also in the treatment of these medical conditions .

Speaker 1 13:24

So I think it's fair to say , then , that the Parkinson's is not just a disease of the brain . It's more systemic , involving multiple organs . For instance , I recently heard that Parkinson's patients had a fourfold increase in melanoma of the skin . Well , go figure , isn't that interesting .

Speaker 3 13:40

Yes , there is an increased risk of melanoma in Parkinson's and it is a neurologic disorder that has an effect on the whole body . So we'll probably talk about this a little bit in the future . What is Parkinson's disease ? It's evolving , partially because of our understanding that it is just more than motor symptoms . It's much more than just tremor . So Parkinson's can affect skin , can affect your eyes , your ability to smell , your digestion , your mood , your cognition . So it is not a simple medical condition that is simply just affecting one area of the brain .

Speaker 1 14:27

And what would you say is the incidence of Parkinson's disease ? Is it somewhat rare or is it more common than we might think ? And is the incidence increasing ? And if so , why ?

Speaker 3 14:36

Mm-hmm . There's a great article that kind of will answer this . It's by Dr Dorsey . Will answer this . It's by Dr Dorsey and it was printed a few years ago , but the title is the Emerging Evidence of the Parkinson's Pandemic . So it is increasing the incidence of Parkinson's disease . About 90,000 individuals with Parkinson's disease are diagnosed in the United States of America each year and they anticipate the projected prevalence of Parkinson's to be about 1.2 million people in the United States of America by the year 2030 . This is an increase compared to prior epidemiological studies and we think there's a combination of reasons for this . For example , the aging of our population we're living longer but also exposure we might have increased exposure to potential risk factors . We might have increased exposure to potential risk factors . So this is kind of a should be a little bit of a wake-up call to help us understand more about the potential risk factors and ways that we can potentially address those . But this isn't I would not consider Parkinson's disease a rare condition .

Speaker 1 16:05

So is there a particular profile of a person who's more likely to get Parkinson's , for instance , is it more likely to be a man or a woman , any racial differences , and what would be the typical age of onset ?

Speaker 3 16:15

Parkinson's disease . They consider the number one risk factor to be aging . It is more common in men compared to women . It is a little more common in Caucasians compared to the Asian population , but there's also potentially more research that needs to be done across the world for us to understand some of those outcomes . The other risk factors include a family history of Parkinson's disease , exposures , long-term exposures to herbicides or pesticides , so you start thinking about potential occupations that might be associated with that .

Speaker 3 17:01

In general , Parkinson's disease is usually diagnosed in the sixth decade of life , so in your 60s . However , I think most people listening to this will probably be very familiar with a gentleman that goes by the name of Michael J Fox , and he was diagnosed at age 29 , or his initial symptoms started when he was 29 . So it doesn't just affect older individuals and it can also affect people that are older than their 60s , but that's the most common , and I do think that there's even growing research trying to help us understand is Parkinson's affecting women or different for women than men ? And this is something that I think in part is because we haven't really focused as much on research in women globally , and so we're trying to do a better job of looking at the effects of Parkinson's disease on women compared to men as well .

Speaker 1 18:09

You mentioned . Perhaps certain occupations might be more at risk . Just off the top of your head , what occupations might ?

Speaker 3 18:15

those be exposed to high-risk herbicides or pesticides . Sometimes that could be in the farming community , for example working with certain heavy metals or toxins , like a welder , for instance . For instance , a welder If you have a career where you work a lot with solvents , sometimes those are found in even dry cleaning . So now that doesn't mean that everyone with that particular occupation is going to have Parkinson's disease . These are risk factors . So one of the questions is why would somebody get it and not another individual not get Parkinson's disease that's exposed to these risk factors ? And that kind of leads to the question of well , what causes it ?

Speaker 1 19:14

Well , and it also leads to the concept of genetic susceptibility . Right , I mean two people sitting side by side with the same exposures . One gets it , one doesn't . We see that throughout the medical world and that has to do with the genetic susceptibility .

Speaker 3 19:26

Exactly Genetic susceptibility , that's right .

Speaker 1 19:30

So then , yeah , you know , I think toxins are a huge issue and often

The Gut-Brain Connection in Parkinson's

Speaker 1 19:35

swept under the rug in medicine . We did a whole podcast on toxins which I encourage people to go back and listen to . But yeah , it's a big , big , big deal . And so , other than say genetics and toxins , are there any other factors that you can think of , like diet , lifestyle or something else that might be contributing to Parkinson's ?

Speaker 3 19:54

Yes , Repeated head injuries . Head traumas are associated with higher risk . There's also certain areas of the country that seem to have a higher risk , which may in part be due to exposures to those pesticides and herbicides . But , like industrial areas , the Rust Belt so those are where you live might be a risk factor . If you look at some of the research for men and women that have served in the military , they do show that there is a potential increased risk of Parkinson's disease for people that have had traumatic brain injury and even post-traumatic stress disorder or other trauma-related disorders . And there's probably a few others that I'm not thinking of right now , but those are the ones that come off the top of my head .

Speaker 4 20:52

I remember something about drinking well water . You are more likely to get Parkinson's .

Speaker 1 20:58

Yes , also in the military , besides the head trauma issue you have the issues of toxin exposure vis-a-vis Agent Orange or the burn pits which were quite common over in the Middle East , in Iraq , and that kind of thing right . Yes , yes . Okay , yeah , cindy , you and I went to a really interesting lecture back a few years ago by an esteemed UAB neurologist which was entitled Parkinson's Disease Starts in the Gut . Now , can either of you all tell us any more about that sort of gut-brain connection when it comes to Parkinson's disease ?

Speaker 3 21:30

So we are whole beings . We're not disconnected or disjointed , but a lot of times we kind of view our mind , as you know , in and of itself , but this gut-brain connection , our vagus nerve , connects our brain to our gut , and there are other connections as well . So there's a few reasons for this gut-brain connection . So one is they did look at the gut microbiome and this is the composition of the bacteria population and other components that make up your microbiome inflammation in their gut . They also had more imbalance in their gut related to the bacteria population . There's also a connection in that the misfolded protein which is the pathological hallmark of Parkinson's disease , called alpha-synuclein , is found in the gut .

Speaker 3 22:48

So the questions that scientists are trying to understand include is there a change in the gut that potentially triggers an immune response or triggers something leading to inflammation and eventually affecting the brain ? Or is there a vice versa ? Is there something going the other way ? Is there inflammation bothering the gut ? So those questions are still being investigated . There's also research looking into leaky gut , which we also call intestinal permeability . That might be an inflammatory process indicating that it's affecting their risk of Parkinson's disease . There's also research where they looked at the esophagus , the stomach and portions of the small intestines and they found mucosal damage in individuals with Parkinson's disease . So probably the connection is still not quite clear , but it is evident there is a connection . There's strong evidence , not much argument about it , yeah yeah , interesting .

Speaker 1 24:17

Just a bit more about that intestinal permeability . It's really interesting and there's so many reasons why people can have that , including an altered gut microbiome that you mentioned . But when you do get that permeability , then things it's almost like a sieve or a filter and if you have larger holes in the filter it's more permeable than it should be . Then things like protein fragments and the lipopolysaccharide from grand negative bacteria they leak through the gut and it's not supposed to be there . And something along the order of maybe 70% of your immune system is right there in the lining of the gut . So all those immune cells just go crazy and they say , okay , we're being invaded , these foreign bodies are coming through , they shouldn't be there . And then they attack these foreign bodies with antibodies . But also then they start creating these inflammatory cytokines right , which go all over your body and cause inflammation , including neuroinflammation , and at the end of the day , parkinson's is a disease of neuroinflammation , am I correct ?

Speaker 3 25:12

Yes , yes , we , yes , the research on neuroinflammation includes what's causing it , and then that might be a pathway for us to target to help reduce or slow Parkinson's disease . So we don't yet have a cure , but all of these components of triggering immune response and inflammation at different levels , by the way , not just at a singular level within our body are being targeted for research . And , yes , long ago they didn't think that that wasn't a component of Parkinson's . But now , yes , especially probably in the last 15 years .

Speaker 1 25:57

Okay , sometimes it takes 15 years for things to go from the research stage to the clinical stage , right . But now you're working at a cutting-edge institution , at UAB , and is there anything that y'all are doing at UAB as far as improving gut health , either for treatment or prevention of Parkinson's disease ?

Speaker 3 26:15

We do not have a specific protocol for addressing gut health and , to be fair , I don't think it has been quite developed , except for the approach to your nutrition , focusing on a Mediterranean-style brain-healthy diet that could influence your gut health . We have some evidence that the probiotics , symbiotics and other form of gut-healthy treatments can help , perhaps even like constipation or other gut symptoms , but we don't yet , which this is a good point . We don't yet have a protocol where we say we want you to develop this dietary guideline and practice these steps and we're going to reassess in three months and evaluate your symptoms again . But I do think that's a good challenge .

Speaker 1 27:38

We should be challenged to think outside of the pillbox and to consider ways to help people live well with Parkinson . Very bright and up on the latest research and we really appreciated that . But at the end of the day , other than stating that Parkinson's disease starts in the gut , she gave no solutions as far as what to do , and it seems like that should be an active area of research , because we know , for instance , the microbiome is related to Parkinson's . Well , we can improve the microbiome . Leaky gut is related to Parkinson's . We can improve leaky nutrition .

Speaker 3 28:04

We talk a lot about exercise and a lot about nutrition but develop a strong , robust protocol outside of talking about what we kind of understand . Regarding the Mediterranean diet and some of the other recommendations , I think maybe we should do a better job or at least within the context of your individual practice , you should start telling people about the resources and the research that could give them a better quality of life , and certainly there is low risk for these recommendations .

Speaker 1 29:06

Correct , correct . And so let's say , for instance , if you had a guy , joe Schmo , and his mama had Parkinson's , daddy had Parkinson's , he works in a chemical factory , you know he's at high risk . It seems like that kind of guy would be well advised to work on his gut health . Yeah , you see what I'm saying .

Speaker 3 29:23

Yeah , I agree . Work on his gut health ? Yeah , I agree . I do find that there's a little bit of a challenge in talking to someone about a behavioral change and if I had a pill to change people's behavior , I would use it , because I would use it on myself . But I will sometimes start with . But I will sometimes start with . I want you to make a goal of increasing your green leafy vegetables and your hydration and I try to make it so it's presentable and feasible . That reassurance and understanding that you actually could change your overall health if you take these actionable steps and encourage them in that process and support them in that process . I do think that that's an important step in providing care for people with Parkinson's .

Speaker 1 30:21

Yeah , it's really hard to get people to change the fundamental way they live their lives , but it's doable and I think we should all not give up on folks . Give them a chance and try to educate them and move in the right direction .

Speaker 3 30:33

Absolutely .

Speaker 1 30:34

Cindy , I sent you something today , a little email . I don't know if you got it or not . It was about basically lifestyle medicine , certain things you can do , and it's really profound . I mean , just doing these simple things reduces your risk of heart attacks , strokes , dementia profoundly . And we did another whole podcast on Lifestyle Medicine and I call it . The subtitle was the Most Powerful Medicine on Earth because it just improves so many things .

Speaker 3 30:59

Yeah , I think we use this term . I think Cindy has used it as well . I think we use this term , I think Cindy has used it as well and you know , as a society we have a different way of viewing health and well-being and medicine . But thinking outside the pillbox about your everyday life and take it upon yourself to also get a little bit of education and understanding , get a little bit of education and understanding . But as a provider or someone out in the community providing education , I think we could do a better job in this area . I do .

Speaker 1 31:34

Yeah , well , we mentioned the Mediterranean diet , which is wonderful . I think it's been voted the best diet for most folks for about eight years running . There's a subset of that called the MIND diet M-I-N-D diet which is very similar to Mediterranean diet but specifically oriented towards things like Parkinson's , alzheimer's , that kind of stuff , and I think there's been some really good evidence of its efficacy .

Speaker 3 31:52

Yes , yes , I do , and I have educational handouts about the MIND diet as well . So with Parkinson's we do talk about modifying your diet and we'll use taste and perception of what you're eating . We often have to individualize , you know , if someone says I can't tolerate that because it gives me a lot of gas and bloating , we have to individualize and we do try to utilize registered dietitians when possible . Most health care providers have limited education on nutrition .

Speaker 1 32:50

Correct , correct and at the end of the day , just like Parkinson's is unique to individual , I think the diet is too , and you have to find the Laura diet , the Cindy diet , the Jim diet and that can be different and sometimes it requires some hand-holding if you've been eating a certain way all your life and you want to make this radical change to a mind diet . We have a functional nutritionist we work with a lot named Rachel Olson . I've got her bio . We did a podcast with her and I've got her bio including contact information on the website wwwmcminnbcom , and so you can check with her and she's super smart and can help people get on the right track .

Speaker 1 33:29

Also , there's a nice book about the mind diet . I forget the exact name of it but I do have it on the website under resources . You'll see the name of that book there . I think it's by Julie Andrews , if I recall . But the nice thing about it it talks about the diet but also has kind of a cookbook aspect to in all one book . So it's really a wonderful resource for people . I've actually gone and looked at all the mind diet books I could find and that one was the best one and again , I have that listed on resources on the homepage there , so all right . Well then , moving on to another lifestyle factor , and that is sleep . Tell me more about the relationship between sleep and Parkinson's , especially with things

Early Warning Signs and Diagnosis

Speaker 1 34:06

like REM sleep disorder .

Speaker 3 34:07

Okay , Parkinson's disease , like we briefly mentioned , has multiple non-motor symptoms and REM sleep behavior disorder , which REM stands for rapid eye movement . Which REM stands for rapid eye movement is when the individual is enacting their dreams . During this phase of REM sleep you are actually supposed to be , you have a protective mechanism that prevents you from moving and enacting your dreams , but for some reason , in about 75% of individuals , maybe even a little bit higher , that protective mechanism , where you're supposed to be unable to move and your dreams , is not functioning . Rem sleep behavior disorder is often seen 5 , 10 , 15 , or more years prior to the onset of the motor symptoms . We consider it a very common prodromal symptom for that reason . So not everyone , though that has dream enactment , or talking or yelling or acting out their dreams , will have Parkinson's . So we can't make that jump .

Speaker 3 35:31

But if someone does suspect that they have these symptoms or their loved one says , hey , you're hitting me in the sleep or I hear you talking in your sleep , sometimes that's a good prompt to go ahead and see a sleep disorder specialist . There are some medicines out there that can interfere with sleep as well . So you just want to get assessed , because REM sleep behavior disorder doesn't give you good sleep quality . Even though you are technically sleeping , you're not getting restful and restorative sleep and it could potentially be a prodromal symptom for Parkinson's . So it might be a good idea to go ahead and talk to someone . Right now we don't have a great way to stop Parkinson's disease , but if we in the future have that ability to slow or stop it , this might be a symptom that we screen for and try to find much earlier on and understand if we can help people in the future with Parkinson's disease .

Speaker 1 36:38

Boy , that opens up so many questions in my mind , and you did bring up a really good point about there's a difference between sleep and restorative sleep . Some people might think they're sleeping . In fact , that's one of the problems with taking things like benzodiazepines for sleep , like your Valium-type drugs . You might sleep , but you don't get the REM sleep , so it interrupts your sleep cycle . So anyway , there's that issue . So if somebody were to go to a sleep specialist , do they have any tools in their toolbox to really help folks with this or not ?

Speaker 3 37:06

REM sleep behavior disorder . Well , there are a few things to treat . For example , there are some associations between untreated sleep apnea , especially obstructive sleep apnea , that might be accompanying REM sleep behavior , but not universally . But some people will utilize melatonin . There is some evidence that it might help reduce the severity of it . Some people will use other medications , like a benzodiazepine , like a clonazepam . There are risk factors . You don't want to take those lightly . The other treatments also include things like really addressing your overall sleep quality , not just one aspect of your sleep , and then safety . With REM sleep behavior disorder , you can unintentionally fall out of bed . You could unintentionally hit the partner in your bed . So you want to think about is there a way I can stay safe if I unintentionally am acting out and it throws me out of bed and I would ? This again is an individualized approach . There are some people that have very minimal symptoms and other people that have quite severe symptoms that really need to have a sleep disorder specialist address them .

Speaker 1 38:36

So we talked about the role of neural inflammation in Parkinson's . Are there any anti-inflammatory strategies that might help to prevent or treat Parkinson's ?

Speaker 3 38:45

To my knowledge , we don't have a specific treatment strategy for this . But back to your point regarding health , we know that there are dietary decisions that increase inflammation , that increase inflammation . So , looking at your diet , go ahead and learn more about the MIND diet or maybe talk to a specialist like Rachel who could help identify areas in your diet that need improvement . Exercise is an important treatment for Parkinson's . It's essential treatment for Parkinson's . It's essential and there is often benefit in reducing inflammation associated with exercise . Sleep quality , sleep hygiene also an important element . But as far as direct medication treatments , I don't have anything that we typically , to my knowledge , we have a specific recommendation on , although I know there's more research looking at supplements , certain fermented foods , and there's probably a lot more out there that I still think we are learning about . What do you know ?

Speaker 1 40:03

I'm sorry , I'm pushing your envelope here a little bit .

Speaker 3 40:05

This is good .

Speaker 1 40:07

But yeah , I think that inflammation is huge and we did a whole podcast on inflammation . I would encourage people to go back and listen to . I think we have a lot of good ideas for how to reduce systemic inflammation , which then could reduce neuroinflammation . But you're on all the right tracks . In terms of the diet , yeah , there's lots of supplements . Curcumin , especially , is probably pretty good . There's some evidence specifically with curcumin and Parkinson's .

Speaker 1 40:29

By the way , Okay great and some studies on that . So , anyway , take a look back at my podcast on inflammation . I think you'll get a lot of good ideas , and speaking of which , yeah , we did a whole podcast on CBTI , which is Cognitive Behavioral Therapy for Insomnia . We had a wonderful guest on the show that time and I think that might help some people . That's a powerful tool in the toolbox there . And also I have a nice handout on the website on sleep hygiene A lot of good things you can do there . You know , some people are their own worst enemies . They're watching a horror movie right before going to bed , right , and we should be doing relaxing things . So I think that we have a lot of good resources for you there on the website . So , anyway , okay , any other comments on that ?

Speaker 3 41:15

I agree , sleep hygiene is probably one of the behavioral changes that can have such a global impact on emotional well-being , cognition , energy level , same with diet . If you are able to put a little time , effort and consistency , the outcomes , the benefits you could reap , could be very substantial , life-changing , literally .

Speaker 1 41:42

If someone has a high risk of getting Parkinson's , for instance , once again mom and dad had it , are there any things that that person can do to improve his or her odds of not getting it ?

Speaker 3 41:52

There is some evidence again that our diet specifically they looked at the Mediterranean diet again is associated with a lower risk risk of prodromal Parkinson's disease in older people . Exercise is a potential benefit for reducing the risk keeping your head safe , your brain , your cognition , you know , say you grew up in an environment where you had a potential risk factor like pesticides or herbicides . If you're able to remove yourself and reduce those exposures , it is worth doing . Even if you think , well , I've already been exposed , there's still benefit in at least getting yourself separated from it when and where you can . Those are some of the ways in which I would say you could potentially reduce your risk . But if you have a true genetic form of Parkinson's disease or you're concerned about it , this wouldn't reduce your risk . But there is a research study called PD Generation , done through the Parkinson's Foundation that will do genetic testing , connect you with a genetic counselor for free .

Speaker 1 43:16

You know . Ok , let me just talk a little bit about the whole genetics thing . I mean , certainly , if you have the genes to increase your odds of getting Parkinson's , then that's not good , but it's not necessarily predetermination Vis-a-vis . You can have two people sitting side by side with the same genes and one gets it and one doesn't . Epigenetics let's say you can take two identical twin sisters with the same genes for breast cancer , but one gets it , one doesn't . And because this has to do with genetic expression , right , and we have a lot of things that can change genetic expression , it all goes back to the lifestyle things we've talked about the diet , the exercise , the sleep and all that , and toxins , because all those things can change genetic expression .

Speaker 3 43:55

Yeah , our environment has a huge impact and you can see it in very simple everyday things . But if you can even reduce stress levels , there's in different ways , whether it's being around people you enjoy going for a walk , getting in the sunshine or it's important to consider it and , I think , a lot of things in your to your point . You know you may have a risk , but you want to be able to take control and or at least have a sense of I have the ability to focus on this area , even if you can't you know we can't determine the next day , but we can at least try to make today the best we can .

Speaker 1 44:43

You and my wife , dr Cheryl , are both bird watchers and I read this really interesting study that just listening to birds chirping reduces your cortisol levels and lowers your anxiety . Isn't that interesting , I believe it .

Speaker 3 44:54

Well , I also find it's just . We have other therapeutic options out there . You know we talk about diet and exercise , but there's music therapy , and it is real . There's art therapy Brooklyn White , who also works with me at UAB , she goes around and does art therapy classes for individuals and care partners across the state of Alabama and you want to think about those as therapeutically beneficial or giving you benefit , whether it's improving your rigidity or reducing your cortisol levels or giving you the opportunity to get out and stretch your legs or just being creative and creating new neuron connections . So I think that there's probably a lot more out there that we could have access to help us if we would just kind of open our doors , so to speak .

Speaker 1 45:52

Please describe for us some of the early signs and symptoms of Parkinson's , both motor and non-motor .

Speaker 4 45:57

There are a number of non-motor symptoms and a number of motor symptoms that are early warning signs , and just because they're on this list doesn't mean that you have Parkinson's . But I was looking at this this is a list of 10 early warning signs and I was looking at it and realized that our dad had seven of them .

Speaker 1 46:15

Yeah , well .

Speaker 4 46:16

And we didn't know enough to put two and two together . We didn't connect the dots . Right , we did not connect the dots , so tremor is probably the first thing that appears , and dots , so tremor is probably the first thing that appears .

Speaker 1 46:27

And , as Laura said , it usually appears on one side , and let me interrupt by saying that there are so many reasons why people get tremors . So anybody listening to this if you've got a tremor , do not extrapolate and think you necessarily have Parkinson's disease .

Speaker 4 46:38

And the next one is small handwriting . And I remember when I was working with the Parkinson's Association of Alabama I talked to someone who that was her first indication that something was wrong . She was doing her Christmas cards and her handwriting was very , very small and she knew something had changed . So loss of sense of smell . And again our dad had significant loss of sense of smell and we attributed it to he had just built his house and he put a covering on his slate floor and he thought that the fumes from that sealant was cause for his loss of sense of smell , sleep disturbances such as REM behavior disorder , and he was up all night .

Speaker 4 47:15

And he was up all night and acting out your dreams . Difficulty moving and walking and many , many falls are part of this Constipation which we all know . He had Softened voice and I think with Parkinson's a lot of things become smaller and softened . So facial masking and that definitely was with our dad and I think a lot of people look at someone with Parkinson's and they think they're angry , but they lose the ability to make facial expressions , dizziness and fainting . Some of that may be due to the orthostatic hypotension and then stooping and hunching over and so postural instability and so , again , if you have any of these things does not necessarily mean you have Parkinson's , but it's . Those are the clues . Those are the clues , right .

Speaker 1 48:07

And again , we often miss many of the clues . We can certainly look at the way people walk and we can see their tremors , but there's so many other things that can be early signs .

Speaker 3 48:17

To your point that not every individual that has these symptoms will have Parkinson's . I have an interesting personal testimony . My dad had reduced sense of smell , he enacted his dreams and he suffered from constipation for probably 30 years . He never developed Parkinson's disease .

Speaker 1 48:40

Or was it just a different expression of Parkinson's disease , like you were talking about earlier ? Or was it a different ?

Speaker 3 48:44

expression Exactly . Now , he did have dementia . There we go . Was it Lewy body or otherwise ? It was otherwise . They called it , well , mainly a vascular dementia .

Speaker 3 48:56

But what I you know , I'm sitting back and looking at my dad , I'm assessing and evaluating . I'm looking for his arm swing , I'm looking for other changes . He also had a history . He played football and he was raised on a farm and so I was watching him and , to your point , maybe he did have something that was unique to him , because he was also very vigilant about his diet . He exercised almost every day of his life . On the day he died he was at the gym that morning . So was some of his lifestyle decisions reducing or preventing some type of progression ? We don't know . But I often found that quite interesting , and he actually kind of knew it too , because he had gone to some of the programs where I presented and he sometimes would ask me do you think I have Parkinson's ? And I said no , I do not think you have Parkinson's . But he kind of had that awareness that well , you're saying these are some of the potential symptoms , and so I just think it's fascinating . You cannot jump and make those assumptions .

Speaker 4 50:20

And another thing about the early warning signs is sometimes they can be present 5 , 10 , 15 , 20 years prior to the onset of the motor symptoms . So it's connecting the dots that we did not .

Speaker 1 50:40

You know , with some diseases , for instance breast cancer , early diagnosis can be very helpful . What about Parkinson's ? Does early diagnosis change outcomes in any way ? Very helpful . What about Parkinson's ?

Speaker 3 50:45

Does early diagnosis change outcomes in any way . So that could be an individual answer , but globally , yes , how so ? So first , knowing the cause of a symptom helps us understand how to create a treatment plan for that individual . So if you have a misdiagnosis , you could have an inappropriate shoulder surgery because you have stiffness and it was misdiagnosed , or you could have something else be provided , that is say , a medication that is not going to be in your best interest . So first of all , avoiding something that should not be done is important . So first of all , avoiding something that should not be done is important . Second of all , parkinson's disease , even in the early stages .

Speaker 3 51:31

Keep in mind most individuals , their first symptoms , those initial motor symptoms like slowness , tremor , stiffness . By the time you are showing those first initial motor symptoms , there's already a deficit of dopamine cells in anywhere between 50 to 60 percent of loss in that area of your midbrain . So you've already had this disorder for many years and perhaps it's in subtle ways , like writing your Christmas cards or are you having difficulty doing other activities and you're just pushing through the day . Whereas if you do have an assessment , an evaluation , a diagnosis and a treatment plan that could help reduce slowness , stiffness , rigidity or maybe get you in touch with someone like Rachel or a physical therapist or someone else to give you ways to improve your mobility , your voice quality .

Speaker 3 52:36

All of those things affect quality of life and there is research showing that some of the treatments , including carbidopa , levodopa , exercise , improving sleep quality have improved outcomes for quality of life , reducing fall risk , multiple areas . So it is important and that doesn't mean not everybody , when they are diagnosed , want to have a specific medication , treatment , but understanding , appropriate resources , ways to live well , all those important aspects of nutrition and exercise should be emphasized , even if you decide . You know I'm not ready for a specific pharmacological treatment at this time . So if a patient or a family member is concerned that someone might have Parkinson's , ready for a specific ?

Speaker 1 53:28

pharmacological treatment at this time . So if a patient or a family member is concerned that someone might have Parkinson's , where do they start as far as getting it evaluated ?

Speaker 3 53:48

My general recommendation and this is because we have such each of us have unique access to the healthcare system , but most people have a primary care provider and my recommendation typically is to contact your primary care doctor . To Cindy's point , you know tremor . You can have other reasons to have tremor . There are medicines that can cause tremor , by the way . There are medicines that can cause tremor , by the way . So you want to be evaluated and assessed by your primary care doctor and discuss your concern and , if appropriate , you can request a referral . Has a neurologist that's trained , with additional years of clinical practice and sometimes research in movement disorders . Those are called movement disorder specialists . They spend more time treating individuals with Parkinson's disease . I would probably recommend seeing a movement disorder specialist if

Medications and Surgical Treatment Options

Speaker 3 54:52

that individual can get to that specialist , but if not , a neurologist in their area . That's what I would recommend for most people .

Speaker 1 55:02

It seems like I recall the movement disorder specialists are kind of hard to get into . Is that right ? That's right . You have to know somebody .

Speaker 3 55:08

Well , there's a lack of neurologists throughout the Southeast and actually most of the United States of America , and even more so the movement disorder specialists . So we have 12 movement disorder specialists at UAB . We have movement disorder specialists at least two in Huntsville one time and effort and energy and money . So we often will start to train folks like myself , where I am an adult geriatric nurse practitioner and I have an interest in neurology and then I come in and receive additional training and work alongside the movement disorder specialist . But we do need better ways , what I call to fast track and get in to see movement disorder specialist . We do .

Speaker 1 56:17

So once somebody gets plugged in with their primary care doctor and their neurologist , then how is the diagnosis made ? Is it strictly a clinical diagnosis or there are any biomarkers or imaging studies that can help ?

Speaker 3 56:28

So Parkinson's disease is considered a clinical diagnosis or there are any biomarkers or imaging studies that can help . So Parkinson's disease is considered a clinical diagnosis , meaning that you have a physical evaluation by a physician assessing your movements , everything from your eye movements your facial movements . We look at how fast you're tapping your fingers , opening and closing your hands . We feel for changes in rigidity in your arms , your legs . We look at balance and we often are able to make a diagnosis through the physical exam , looking at the person's health history , any recent lab work , and occasionally we will need to look at further imaging and those images can include an MRI of the brain . But it is not necessary to make a diagnosis .

Speaker 1 57:23

And what do you see on the MRI ? That's sort of a hallmark of Parkinson's .

Speaker 3 57:27

Well , typically , one of the reasons we don't need to look at the MRI is because we don't see significant . So it's to rule out other things . Yes , to rule out other things . But there are two other images , diagnostic images and techniques that we use now . One is called the DAT scan , and the DAT scan has been out for , I want to say , about 12 , 13 years now .

Speaker 1 57:58

Is that D-A-T ? And if so , what does this letter stand for ?

Speaker 3 58:01

Dopamine transport scan Okay , cool Is a brain imaging test that is FDA approved to distinguish between Parkinson's disease and essential tremor .

Speaker 3 58:13

It doesn't differentiate between different forms of Parkinsonism but it does help us distinguish if someone has a loss of dopamine in an area of the brain called the striatum , and usually we use this if we have difficulty diagnosing Parkinson's . So that's one test . The newer test that is quite interesting goes back to this change in pathology with alpha-synuclein inclusions . We can find alpha-synuclein in skin . So there's a test called the Cy1 biopsy and this test involves three skin biopsies and it's about the size of a head of an eraser and the samples are taken from the upper back , the lower thigh and above the ankle and they're able to look at abnormally folded alpha-synuclein in the nerve fibers of the skin to help us clarify if the person has the pathological hallmark of a misfold of proteins called alpha-synuclein . So that is kind of exciting because we didn't really have a way to identify Parkinson's disease when we really are unsure of a diagnosis . And both of these images are helpful but they're not required .

Speaker 1 59:52

I was talking to some scientific geek friends the other day and we were talking about protein folding . It's so fascinating if you kind of look at the protein and how the structure of it . It's very intricate and I think people thought we would really never be able to figure it out . But AI has figured it out . It's fascinating . These sort of supercomputers have figured out how these proteins are folded and so then that opens up a whole new frontier as far as medical therapies , and so I think we have a lot of exciting things to come , because so many diseases like ALS , parkinson's , all these really have to do with misfolded proteins .

Speaker 3 1:00:30

Yeah , tauopathies . And yeah , you're right . So we think we have a better understanding that this is dysfunction . How is it happening ? Where does it start ? What's triggering it , that inflammatory process ? And that's you're right . It is very exciting .

Speaker 1 1:00:47

So once somebody starts having symptoms , how rapidly does it typically progress ?

Speaker 3 1:00:53

So the progression of Parkinson's disease is individualized . Each person is unique . Most of the time Parkinson's disease is a slowly progressing disorder . This goes back to that statement of we know . There are these prodromal symptoms that may start 5 , 10 , 15 plus years before the motor onset . So the progression is unique to each person and it's very challenging because I'm not able to tell you what the progression will look like . So typically , if you're trying to get an understanding of the progression , dr David Standard , the chair of the Department of Neurology , will use this approach . He'll say if you want to look at what is occurring in a one-year period and that kind of , those changes that you're noticing would usually be consistent with how the next year will be . Now that's kind of quite simplified but we don't have a great way of knowing . And then there's other elements of well , if you start to look at your exercise program , could you potentially slow or change the progress of Parkinson's disease ? There is debate , but there's some encouraging research that may support that . So that may also vary progression for some people .

Speaker 1 1:02:33

So at this point , based on what we have for therapy now , is there any option for disease reversal or a cure , or are we mainly looking at symptom management and slowing progression ?

Speaker 3 1:02:45

We're , at this point , still mainly symptom management and making those decisions to focus on your exercise and all other lifestyle changes that may , by the way , affect other comorbidities in your life , especially cholesterol and things that we haven't mentioned but are essential to living well . We haven't mentioned but are essential to living well . That's where the research is honing in on this . Can we slow the progression of Parkinson's disease ? And probably , like most things , then it could progress to a reversal and you know they're looking in areas including gene therapy and areas including the neuroinflammation and reducing that or reversing it or stopping it from happening . But to date we don't have a pharmacological treatment and we encourage everyone to really make their number one medication exercise and all those other elements that we've been encouraging folks to focus on part of living well .

Speaker 1 1:04:00

Okay If somebody were to be diagnosed with Parkinson's , say a guy in their 70s . If you look at the average life expectancy for a guy , it's about 78 . So is it fair to say that for most people they're probably going to die of something else before they die of Parkinson's ?

Speaker 3 1:04:17

A lot of times that can ring true . You know we hear this a lot that people will say I die with Parkinson's or not because of Parkinson's . But there are complications that Parkinson's can contribute to , including fall risk or difficulty swallowing , increasing the risk of aspiration or pneumonia . So we don't want to . We want to look globally at that , those risk factors . We want to look globally at those risk factors . But yes , a lot of times people can live well with Parkinson's disease and there , older , we accumulate little problems . Somehow this happens as we age . So most people with Parkinson's have had something else going on in their life before they see us when they're in their 60s or 70s . But to answer your question in general , yes , a lot of people will not necessarily die because of their Parkinson's disease . I tend not to focus on that because I feel like it's an overgeneralization , but yes , Okay , so earlier you mentioned carbidopa , levodopa .

Speaker 1 1:05:43

Would that be the standard pharmaceutical treatment for Parkinson's ?

Speaker 3 1:05:46

It's considered the gold standard of treatment for Parkinson's disease and carbidopa levodopa I believe in the 1960s is when it was developed and it is . One of the reasons it's so effective is that and I know we'll talk about this a little bit further but it's replacing the dopamine . That's the primary neurotransmitter . That's a deficit in the brain . But there are multiple other medication options and probably a little bit too much for me to cover in one sentence . But not everybody starts off taking carbidopa levodopa . There are medications like monoamine oxidase inhibitors , like rosagiline , and there are dopamine agonists like pramipexol , ropinerol , apomorphine , roticotine patch . But most everybody , at some point in time in their journey with Parkinson's , will start on carbidopa levodopa .

Speaker 1 1:06:54

And so how effective is the carbidopa , levodopa ?

Speaker 3 1:06:57

It's very effective , especially early on in diagnosis , in treating slowness and stiffness . Tremor control in particular is a challenging symptom to stop or slow down . Not everybody's tremor responds to the carbidopa levodopa , so it's not uncommon for people to take more than one medication to try to treat the different symptoms of Parkinson's disease , but it is often highly effective . The challenge

Living Well with Parkinson's

Speaker 3 1:07:30

with carbidopa levodopa is that it has a half-life and it wears off , meaning the benefit of the medication is not sustained for 24 hours or even 16 hours . So many people with Parkinson's disease a majority have to take the medicine three times or more per day , which is a challenge . So developing , you know , we think about ways of stopping the disease and improving quality of life , but we also need to work on developing medicines that are acting for longer periods of time , so the pill burden is less and so someone has sustained benefit during their active time of the day .

Speaker 1 1:08:15

Does the carbidopa levodopa have a lot of side effects or is it pretty well tolerated by most folks ?

Speaker 3 1:08:20

Unfortunately it's so variable . The number one adverse effect is nausea and carbidopa is carbidopa . Levodopa is actually two medications put in with one pill . The carbidopa prevents the breakdown of the levodopa in the gut , therefore allowing the levodopa to cross into the blood-brain barrier where it's turned into dopamine . So the number one side effect is nausea and the carbidopa in theory reduces that risk factor , but it's still there .

Speaker 3 1:08:56

Carbidopa levodopa can also cause lightheadedness , dizziness , low blood pressure . In more severe circumstances it can increase risk of hallucinations , but that is usually in much more advanced stages and at much higher levels . So one of the important elements of starting any medication , in Parkinson's in particular , is to start very small dose and increase very gradually and to be told what the potential side effects are , when they may occur and what to do if they potentially occur . So , for example , nausea If nausea occurs with carbidopa , levodopa Interestingly often a small carbohydrate snack can reduce the severity of the nausea pretty significantly for many people . So you may not need a medicine to block the nausea or even to change anything . You may just need to take it with a small snack until your body gets used to it .

Speaker 3 1:10:07

But if you do have other adverse effects , especially lightheadedness , dizziness or other problems , you want to contact your physician . You want to know who to call and what to do if those occur , and that is all an important part of your healthcare provider being a part of your team and communicating with them , because you shouldn't be sent home with a bottle of medicine and told start this . That's not the way to provide care . You should be told what to do , when to do and what with the medicine and if there is a problem , how to address it . There are really nice little handouts that give you kind of a rundown of potential side effects and I recommend folks download those and we can talk more about that later . But you can't keep every bit of knowledge for every pill you take , so you want to have a reference .

Speaker 1 1:11:03

Are there any surgical options for Parkinson's ?

Speaker 3 1:11:06

Yes , probably one of the most well-known surgical option is deep brain stimulation and this is where a small electrode is placed in the brain and the electrode delivers impulses that kind of disrupts the signaling . We think there's a missignaling happening in the brain and it tries to disrupt that and by doing so it usually is going to have significant improvements in tremor but also helps stiffness and slowness . Deep brain stimulation is a procedure that requires a specialist to evaluate you Is this the right procedure ? And go over the risk factors . You also get a consultation visit and evaluation with a neuropsychologist . So we look at your cognition . We know that there's a slight increased risk that surgery on the brain and deep brain stimulation could affect cognitive symptoms . So we want to know how you are before you have any surgery on your brain and , of course , you're also going to work with a neurosurgeon . It is highly effective , but it is brain surgery , so you typically are going to have this procedure when the medications are where you have either motor fluctuations or side effects or not getting the benefit you need from the medications before considering a more advanced therapy .

Speaker 3 1:12:40

The other treatment is a surgery , so to say , but what they consider it non-invasive in that it is not an implantation . It's called focus ultrasound and this is where they use heat waves and very direct , fine focus of these heat waves on targeted brain tissue to reduce the tremor . It's mainly used for tremor control not only in Parkinson's , by the way , but both deep brain stimulation and focus ultrasound have been used for other forms of tremor , like essential tremor . Both of these are invasive in that you are having an effect on the brain . The thing about deep brain stimulation is it's modifiable . You can change the stimulation , the direction , the intensity , and they're even developing ways that deep brain stimulation can be adapted , where it understands the signaling of the brain and reacts to the individual signaling of the brain . So this adaptation , this more advanced way of stimulating the brain , is now becoming more common . It doesn't cure Parkinson's , but these treatments do improve symptoms .

Speaker 1 1:14:09

Cindy , didn't you have somebody in your support group who had deep brain stimulation and who raved about it ?

Speaker 4 1:14:14

Yes , yes yes , it was a remarkable improvement in his quality of life and his ability to live well .

Speaker 1 1:14:23

Do stem cells , gene therapy , microbiome transplantation have any future in Parkinson's care ?

Speaker 3 1:14:32

transplantation have any future in Parkinson's care . Yes , research , looking at all three fronts , which they really provide an opportunity to potentially slow Parkinson's disease . When you think about these potential therapeutic options , of course they're complex and you don't want to do something like gene editing when you don't have confidence in the procedure . So we are still learning about these and there's a lot of research in these areas . For example , they're looking at using the patient's own blood and converting it into pluripotent stem cells . So that's one area of research that's quite exciting because when you utilize someone's own cells , that immune response is not going to occur if it's from your own body . Hopefully .

Speaker 3 1:15:31

The microbiome also another area , as you mentioned , and we don't have specifics that treatments right now outside of the dietary recommendations . But , yes , all of these and there's a lot of great information we can go over good resources . There's great webinars , printed resources and lectures that we can point in the right direction . It's such , if you're interested in learning more about this , I think it'll be encouraging the more you kind of learn about all that's going on across the world in the area of research . And I want to make a real quick plug , real briefly , for the World Parkinson Congress , four years where everyone in research people with Parkinson's , clinician care partners come together for one conference and the next one's going to be in 2026 . And researchers leading researchers in gene therapy , stem cell research come and give presentations on what's going on in their labs and it's done in a way that everyone comes together and learns about ways to improve the lives of people with Parkinson's . So if you want to learn more about it , that's one way that online resources we can give you as well .

Speaker 1 1:17:05

Well , that's wonderful . Thank you so much . Sounds like an exciting conference . Are there any new exciting cutting edge therapies in the pipeline that we can look forward to hope ?

Speaker 3 1:17:13

is to improve on time by giving someone the benefit of the medicine at a steady rate . So we currently have a way to deliver carbidopa levodopa through the subcutaneous tissue . It is amazing . That's exciting , especially if you consider someone that needs to take carbidopa levodopa every three hours , or if they have wearing off or bothersome dyskinesias . These are involuntary movements that occur due to the carbidopa levodopa and progression of Parkinson's . So that is here and now . It is still in the process of getting approval by Medicare , so we still are working on access to that .

Speaker 3 1:18:18

There's also another pump available and that medication is apomorphine and that's a dopamine agonist that has recently been approved by the FDA agonist that has recently been approved by the FDA . This pump may not be as useful for some patients because tolerance of certain medicines is more challenging , but it is another treatment option where the medicine is delivered at a steady rate throughout the day and in night In individuals that are able to tolerate it . The inconvenience is you do have to carry around a small pump device about the size of a one and a half to two cell phones and you do have to change the little location of the cannula patch site . But considering that it may improve your overall on time and the pill burden reduced . A lot of people find that beneficial .

Speaker 3 1:19:22

So , in regards to future treatments , that adaptive deep brain stimulation is very exciting for many folks . That's here and now and also probably something that more places will be offering . Medication-wise , they are still looking at a couple of newer medications . They are forms of like dopamine agonist . But if you really want to get down to some of the newer research , I usually recommend going to the Michael J Fox Foundation and looking at the Fox Trial Finder or you can also go to several other resources to look up some of the clinical trials and where they are in potential phase of the trial and if they're going to potentially have a new treatment . They can't ever tell us specifically when that will be released , but Michael J Fox Foundation does a great job of keeping that information up to date .

Speaker 1 1:20:30

Yeah , tell us about some holistic measures that y'all might employ , for instance , boxing , balance exercises , power walking , that kind of stuff . Anything else that you would recommend there .

Speaker 4 1:20:39

Yeah , there are quite a number of things , Jim . To Laura's point , every exercise is just critically important and it's not just walking to the mailbox to check your mail , it's vigorous exercise that will stimulate the body . So , as you recommended , boxing has been shown through research to actually slow the progression of the disease down . So there's great promise in that . Rock-steady boxing is becoming more and more evident and much more available to people in different communities . Tai Chi is another one of those things that is very effective with Parkinson's . In all of these things you don't have to go to a gym . You can look on YouTube , you can look on Google and just find things that you can do in your own home in a safe environment . Yoga also is another thing that is very helpful to loosen muscles and to help people feel better . Biking there are programs , I think through the Parkinson Foundation that has a very formal program for biking . As Laura said , music therapy , dance , has great promise and I think UAB has a great program with that , Do they not ?

Speaker 4 1:21:45

Yeah , the art and medicine program at UAB collaborates with some of our amazing dancers in this region to have a Parkinson's dance class at Southern Works in Homewood socially is one of the most difficult parts of Parkinson's , because anxiety , depression , apathy are some of those non-motor symptoms that make people want to stay inside and not be a part of society , and so families suffer . Caregivers suffer with that as well . So socialization and making it a point to get out and be in the world and that's one of the great things about support groups they help encourage that as well .

Speaker 1 1:22:33

You know , one of my next questions was going to be about anxiety and depression , cindy , so what do you all typically do for that , as far as how do you address those issues ?

Speaker 3 1:22:41

So anxiety , depression , apathy are common . Non-motor symptoms in Parkinson's disease are common non-motor symptoms in Parkinson's disease . It is estimated that about 50% of individuals at some point in time in their diagnosis will be affected by these symptoms . It is a challenge because there are some treatments you know , but really it requires looking at the individual and talking about what they're doing to help their health . Parkinson's likes to isolate people . It tries to in some ways the symptoms do , whether it's a change in mobility . So just coming out and talking about your mood sometimes is the first step , is letting someone know or letting it be known to your healthcare provider if you don't want to talk about it with your family .

Speaker 3 1:23:38

Usually the treatments pharmacologically can include , first of all , removing something that might make your mood worse . So first you want to look at is there something exacerbating or making your mood worse ? We also look at this concept of improving on time . So dopamine we probably are talking about it as if it just affects motor symptoms . It affects mood . So if we have a way to improve someone's on time and improve how they feel throughout the day , sometimes that does have an impact on their mood levels .

Speaker 3 1:24:22

Anxiety , depression . We also look at treating any sleep symptoms . We know that poor quality sleep has a significant effect on mental and emotional well-being , and exercise is also highly recommended , providing ways to get in touch with support groups , whether it's online or in person . With support groups , whether it's online or in person and I know , not everybody wants to go out and go to a gym , but getting outside or doing something outside in the sun . If you want , wear protective clothing , but you need to have some time where you're outside when possible , in nature when possible , and we do often treat symptoms with medications as well .

Speaker 3 1:25:13

Again , very individualized . There is also research that shows that working with a mental health professional , a counselor , a psychologist , along with treatment of symptoms with medication , has improved outcomes than either treatment alone , isolated by itself . So you may want to talk to someone , whether it's a spiritual connection , or work with a counselor , or maybe even talk to support group leaders about that as well . So I would say it's individualized . There are treatments and the treatment path may vary for each person throughout their stage in Parkinson's disease .

Speaker 1 1:26:02

Yeah , that's great . Thank you so much . Really powerful , because I think that living with a progressive chronic disease can be a lonely journey can certainly mess with your mind . And so , cindy , I think at one point you were talking about a gentleman that you knew in the support group who saw his pastor and it was really helpful for him . That segues into the next question . You know I've always encouraged my patients to put together their healthcare team . You know , once you get that diagnosis , that's a time to think about . Okay , who's on my team ? And so tell me please , who would you recommend that folks put on their health care team ? We've talked about the primary care provider , the neurologist , the movement disorder specialist , et cetera . Who else would you have on your team ?

Speaker 4 1:26:42

Well , as Laura said we do . I think people start out with the primary care provider and their neurologist . We would always recommend that people see their neurologist on a regular basis and try to see their movement disorder , like once a year or so , unless anything else is indicated .

Speaker 3 1:26:58

At least . But we have some patients that you know have other preferences and we try our best to accommodate that .

Speaker 4 1:27:05

But yes , in general and other people on the team building episode would be other specialists like the urologist , a dentist . Dermatologist , because people with Parkinson's are more prone to get melanoma and other skin conditions . Optometrist , because the eyes are affected by Parkinson's . Of course , a physical therapist , and they can work on balance training gait assessment . Of course , a physical therapist , and they can work on balance training gait assessment falls prevention . Occupational therapists all of the therapists . Speech therapists can help with

Cognitive Changes and Lewy Body Dementia

Speaker 4 1:27:35

swallowing issues with the voice , because the voice does become very , very soft . Dermatologists , as I said , and counselors , therapists or clergy , wherever you can talk about the chronic illness which is , as you said , is very difficult to deal with on a long-term basis .

Speaker 1 1:27:52

You all have brought up the issue of falls a couple of times and let me just mention I did a whole podcast on falls and balance and so I would refer anybody back to that who wants to take a look at that . But it's a big issue I know with my mom and dad . A fall was really the beginning of the end , so I think anything we can do there can be helpful . So take a look at that podcast we did there . Another thing that you see with Parkinson's patients , according to my reading , is sexual dysfunction , and so any thoughts on that ? Who would they see for that ?

Speaker 3 1:28:20

Yeah , sexual dysfunction is common in Parkinson's disease . Usually we would refer to a urologist , in part because you want to evaluate again globally . We don't want to just assume it is only due to Parkinson's disease . There are specialists that provide treatment , but first you want to get an evaluation or referral and evaluation . There's also , you know , just discussion about changes in intimacy , beyond perhaps what some people's comfort levels are . Those changes in intimacy are probably something that some people would benefit by working with a sexual therapist . Someone that has training , knows how to have the conversation , knows how to be productive in ways to help each couple or the individual . So I think you know , even though this topic is not spoken as much probably a little less in the South , it's important , it's a part of your emotional health , your well-being .

Speaker 1 1:29:32

Well , it's important for some people and for others it may not be , but for those who it is , it can be a big deal . And , by the way , we did a couple of podcasts on healthy sexuality for men and women , and on the show we had a wonderful sexual health therapist named Valerie Padd , p-a-d-d , and you can go onto the website mcmandmdcom and see her bio and I think there's some contact information there as well , and she does treat folks remotely , and so if anybody has any needs in that department , check out Valerie . I highly recommend her . One more thing about building that team . It's not always possible , but if you can , it's helpful to have as many members of the team as you can in the same hospital or health network . I know here in Birmingham we have UAB and this hospital and that hospital , whatever , and when you get people in different health systems they can't really talk to each other or don't .

Speaker 3 1:30:27

They can't access your records , for instance , and so it's always helpful if you can get people on the same team at the same hospital . I'm just saying I agree In general . I would prefer that , but then I'm sitting here as a UAB provider , so I don't want to be seen as biased . But yes , in general , and part of that is because of the complexity of our health care system . This is not because of just Parkinson's itself , it's also . Our health care system has been designed in a way without the individual in mind .

Speaker 1 1:31:04

So what about the Parkinson's support groups for patients and for care providers ? How do they play a role in this scenario ?

Speaker 4 1:31:12

I think they're critical as far as coping with the disease and learning , and that's one of my main motivations of doing the support group in Anniston is that , again , when we were dealing with Paul with his Parkinson's , we knew nothing , and so I guess I'm kind of overcompensating here as far as education is concerned , but that's one of the things we try to do in our support group at least , and I think most do that to some extent . Other values of support groups it's a sense of community . Rock Steady Boxing does things like that , and Tai Chi and , like you said , going to the gym and it helps people feel like they are not alone in this . It's an opportunity to share like experiences , similar experiences , share opinions , get opinions , get input into certain issues that people are having , get advice in a safe environment . It is learning about resources , both local and statewide , and improved quality of life . I think it helps to reduce depression , and I think depression and anxiety are both under-evaluated and under-treated and they have more impact on the quality of life than the motor symptoms sometimes . And it's important to know that support groups are both in-person and online . There are many organizations that have online support groups both for caregivers and for people with Parkinson's themselves , and so they're very particular .

Speaker 4 1:32:40

I remember going to you may not know this , jim when we were dealing with Paul , with his hallucinations and his delusions , we knew something was wrong . And I remember going to a Alzheimer's support group in Anniston because that's all they had and it did not meet my needs at all . It was just a completely different set of issues . And so my point is that it's real important to find a support group that does meet your needs and will provide information for the issues that you're dealing with . And they're fun , like Brooklyn came to our support group last month and we did the painting and it was really fun .

Speaker 4 1:33:17

And I think you learn coping skills through support groups . And there are lots and lots of value . But they're not for everyone , I do admit that , and I think some people are afraid to go to a support group because they're afraid they're going to see what they're going to be down the road . But we encourage don't compare yourself to anybody else . Everybody handles their Parkinson's and progresses in different ways and so it's not for everybody . But they sure do provide a lot of support for some people .

Speaker 3 1:33:45

I agree , I wholeheartedly agree . One of the things I try to emphasize is that oftentimes I've learned something about Parkinson's disease because I attended a support group , that , whether or not it's because someone told me about an experience they had . But I'll give a great example A gentleman that used to lead a support group in the Huntsville region and he had difficulty with excessive drooling . And drooling is a common symptom in Parkinson's and it's due to reduced swallowing frequency . And while we have a few treatments for it , like botulism toxin injections , we don't have a way to stop it . So this gentleman was adapting to it and one of the ways he did is he got these little sweat bands on his wrist . Did is ?

Speaker 3 1:34:54

He got these little sweat bands on his wrist and the drool wasn't major . So he would , instead of carrying napkins or a handkerchief , he would just put the little sweat band to this corner of his mouth and that way no one really noticed the drool . It addressed the fact that he was having mild symptoms and it didn't stop his day . So when he exercised he just went like that and put the little sweatband to the corner of his mouth and kept going with his day . That's not a treatment you're going to learn in a clinical environment , and it's not something that fixed his problem , but it adapted to his needs and it helped him . So that's what's amazing is , when you are an individual living with Parkinson's and a care partner , you become experts and you design ways to adapt that have not been thought about , and that's great , and we want to utilize that information between one another in helpful ways .

Speaker 1 1:35:56

And the groups really help us get together and brainstorm and learn from each other . Right , and I've been to your group , cindy . It was wonderful , I really enjoyed coming over , but I could see that it was not only helpful for the patients but for the care providers as well , and so that was great . And one thing you kind of alluded to was that some people are reluctant to come because they see people who may be further advanced and they say , well , gee , that's my future . And I think that's one of the challenges of chronic disease , that we could all maybe benefit from a counselor or whatever .

Speaker 1 1:36:26

But it's trying to sort of live in the moment and be present in this day and not really live in what am I going to be like two years from now ? But that's easier said than done . But as much as we can sort of try to be present in the moment , then that's helpful . And I think that , just like a lot of things in life , that takes practice and attention . And let me twist that around I think sometimes we can if we look . You don't have to look too far to realize there's a lot of people who have it worse off than you do , and so if you can sort of wake up every day with a sense of gratitude right , okay , I have Parkinson's , but there's a lot of things I don't have . Okay , and focus on the good in your life and focus on gratitude and I think that can go a long way . But again , easier said than done . But tell us about the Living Well with Parkinson's Disease program .

Speaker 3 1:37:20

Well , we have a program called the Good Start Program for people that are diagnosed recently with Parkinson's . Although we highly encourage anyone interested in learning recently with Parkinson's , although we highly encourage anyone interested in learning more about Parkinson's disease , this program is designed to introduce you to some of the topics we talked about today . What is Parkinson's ? What are the treatments ? We talk about diet . We incorporate information about exercise . What is building a health care team ? How can I do it ? And that's about the program is designed to be presented in small group atmospheres . People to be more interactive allows for more time for people to ask their questions .

Speaker 3 1:38:11

We also try to bring in allied health care providers , including speech-language pathologists , occupational therapists and physical therapists , and while they don't represent every member of the Parkinson's care team , they're some of the more vital members in that you have an ongoing relationship with them that oftentimes will span four or six-week intervals , two or three times a year , and so you're introduced to those professionals and given opportunity to talk . And then probably one of the more important aspects of it is we try to give you locations , to find reliable resources and to let you know about folks like Cindy , their leading support groups and connecting you with resources . So even if you are in the middle of Alabama , you know what phone number to call , you know you can go to an online support group and , although it's a challenge to live in these rural environments in regards to access to some of the resources , we want to be able to give you ways to connect , because most people and again we need to improve our healthcare system will say I spent 30 minutes in the clinic and that was it . You know , 30 minute visit and then I see him again in six months , so you're not going to be able to get what you need just within those 30 minutes . So how can we provide the benefit of education opportunities ? To connect you to resources is and we can leave some information with you about where to connect to it .

Speaker 3 1:40:15

But if you have not gone to a basic education program about Parkinson's disease , I would probably start with either that program or there's a few others out there as well . I wouldn't say that one is better than the other . Part of it is just do you prefer to learn online in person ? What type of learning style do you need and where are you in the acceptance phase ? So we are probably going to try to build on these programs maybe create something for people that have more advanced symptoms in the future , but these programs are also being developed by feedback from individuals attending , so we're hoping to modify them in the future based on what people want , what they're telling us .

Speaker 1 1:41:00

Yeah , that's great . Well , any resources that you have , if you'll send them to me , I will make sure to put them on the website so people can contact those . You know I've always loved the term care for the caregiver and I think sometimes these caregivers are really struggling and so I know in your support group against any y'all help them there . But what else can we do as a medical community or society to support the caregivers ?

Speaker 4 1:41:21

Well , there there are support groups specific to caregivers , and it is , it is essential that they get support from family friends , but not and again , not everybody with Parkinson's has a caregiver , has a provider , has a care partner in their household . So the family and friends is always critical . I don't think we could have gotten through our years , jim , without our family and friends . That was critical . So anything else , laura , that you have least one other connection .

Speaker 3 1:41:51

That's about them , not about necessarily seeking something out for the loved one they're caring for , but who is it ? Is it a friend ? Is it a support group member ? Who is your sounding board ? Who is at least one specific person ? And we probably , because we know that the prevalence is increasing the importance of helping care partners , whether that's something that may seem simple , but proper ergonomics is an important concept . Do we need to start developing programs where we help people understand how to move their body so they don't have an injury when helping their loved one ? So we have a lot of room to grow in how we can support care partners . We do know that it actually increases risk of depression and other symptoms . Caregiver burden can do that . It doesn't do it to everyone and it doesn't mean that person doesn't care . That should never be thought or said . So what I would say is we have some resources , but we have a long way to go . We need improvement in this area .

Speaker 1 1:43:28

Just a real quick shout out to Miss Martha , who used to come and help us . She was such a wonderful lady . She always called my dad Papa and he learned to love her and she was so helpful to us . Sometimes she gave Cindy or my mom a break and it was really great to have her around . So if you're listening , miss Martha , we love you very much . I've heard the term hospital kit . What is a hospital kit ? Can you tell us more about that ?

Speaker 4 1:43:52

Well , let me just start by saying one of the most frightening times in the life of anybody with Parkinson's is being hospitalized . It can be extremely terrifying , and it was for us on numerous occasions . So is there a hospital kit specifically ?

Speaker 3 1:44:08

for maybe so . Is there a hospital kit specifically for the baby ? Yeah , so the Parkinson's Foundation did research looking at the awareness and understanding of Parkinson's disease for nurses and physicians in a couple of hospitals and they found out that most people have little education and understanding about Parkinson's disease in the hospital , setting a way for people to help prepare them if they were to have to be hospitalized , whether it's because they need a hip replacement or an emergent or urgent care . The hospital kit provides little handoffs you can give to healthcare professionals that briefly talk about Parkinson's disease , medications that are contraindicated in Parkinson's , that it's important to get their medications on time , that Parkinson's can cause pain , that Parkinson's can . That there's an increased risk of hallucinations , delusions , whenever you're hospitalized . Usually it's due to delirium . Maybe someone has an infection or some other , maybe it's induced by medications . Oftentimes we know that there's a higher risk of decline due to hospitalization . Just the hospitalization itself not the reason for being hospitalized , but being in the hospital itself can contribute to a decline in Parkinson's symptoms Oftentimes . This is what the hospital kit is trying to avoid by making sure they don't get medicines that block dopamine , that they're given their medications on time and that the healthcare providers have resources about Parkinson's . Probably even with that resource , patients and caregivers , care partners , will say we still had difficulty . So I encourage most folks to don't hesitate to call your neurologist , your movement disorder specialist . I can't always directly intervene but I can do my best to try and say let me talk to the attending . Is there someone that I can correspond with and tell them that Zyprexa or whatever medication is contraindicated and provide some education when and where needed . Letter that you can fill out that says here's Parkinson's , here's the symptoms , and the physician can sign it for you so you can present it to the surgeon or give it to the anesthesiologist , because some of the medications that are commonly used block dopamine and temporarily make symptoms worse . It's not permanent , it's temporary , but still , if we can avoid it , it's important .

Speaker 3 1:47:33

The hospital kit can be downloaded , I believe , and we can give a link to that . Ideally every person would have it , every person would review it and have access and have it , so it's easy to grab . I had one individual that kept one in their car , which I thought that was great . But hospitalizations , unfortunately they happen . There is an increased risk of hospitalizations due to Parkinson's

Resources and Support Network Building

Speaker 3 1:48:04

because of falls and injuries and injuries . So , while we never want one , I would try to get that hospitalization kit or hospital kit is what they call it . Another term is aware in care done by the Parkinson's Foundation and just have kind of that knowledge base that when you go in there you are probably going to be the expert in Parkinson's , probably not the individuals that are caring for you . You are probably going to be educating them and advocating for your loved one . While that shouldn't be the case , that is unfortunately common .

Speaker 1 1:48:46

Everybody in the hospital needs an advocate . Absolutely Sabotru right .

Speaker 3 1:48:51

Absolutely . I've had personal experiences and it is very true you should , when at all possible , have someone with you something like this a dog can have ticks and fleas at the same time .

Speaker 1 1:49:12

Now , how is that related to Parkinson's ? Well , my dad , as his disease progressed , he ended up with dementia and , ignorant as we were , we thought , oh , he just happens to have two entirely separate bad diseases like ticks and fleas , separate diseases . So anyway , little did we know that it was just a different expression of the Parkinson's . It's called Lewy body dementia . It's usually made later on in the disease . But anyway , do me a favor and tell us , tell the audience , just a little bit about Lewy body dementia in association with Parkinson's .

Speaker 3 1:49:43

Okay , so there's a couple of terms . One is Parkinson's disease with dementia and one is dementia with Lewy body or Lewy body dementia . And what we believe we understand is that Parkinson's disease that starts off as that classic symptom where you mainly start with motor symptoms while you have multiple other symptoms . Oftentimes later on in the disease , which it can be several years , there is an effect on the brain in the area of cognition , reasoning . As the disease progresses , it affects those areas of the brain . It affects those areas of the brain including perception , vision and more autonomic dysfunction , fluctuations in blood pressure , alertness , things like that and this is when it progresses . We usually will call it Parkinson's disease with dementia or dementia with Lewy body . So it's an area of the brain as it's being affected , is going to increase symptoms like hallucinations where you see people or bugs or animals .

Speaker 3 1:51:00

There are some individuals that are not distressed by this and I can't tell you why . I think it's just one of those unique things . Well , they think they're very real . They think they're very real . And then there's other people that have false beliefs that counter to any reasoning . They cannot let them go . Those are called delusions , and delusions are false beliefs and you cannot let them go . One delusion can be something like you think your spouse is unfaithful . There's no evidence to this , but your mind has convinced you of that . There's also another phenomenon that are illusions . An illusion is a misperception of an object , like , for example , you look on the floor and there's something crumbled up and you think it's a cat that's now entered your house and you get closer to the crumbled up object and you realize oh , that's a shirt that I dropped on the ground . That's different than a hallucination . There was an object there and your mind misperceived it temporarily , hopefully .

Speaker 3 1:52:16

But dementia with Lewy bodies usually entails the combination not always , but you can have hallucinations . By the way , the hallucinations aren't always visual . You can have olfactory , where you think you smell something and it's not there . You can have sensory , where you think something is touching you and it's not there . So you can have auditory , where you think something like someone's knocking at the door and it's not occurring . So if there's a sense involved , there's a potential that there's a misperception of that sense , and vision is probably one of the more commons . It can be very alarming to the point where you think someone has maybe invaded your home or there's an animal loose in your house and that is real to the person experiencing them . It's extremely real , and trying to convince them that it's not real is almost impossible .

Speaker 1 1:53:20

It's impossible . We tried , it's impossible , yeah .

Speaker 3 1:53:22

So oftentimes we want to look at is there anything exacerbating these symptoms ? So our medicines are working where ? Where are most of the Parkinson's medicines working In the brain ? And even if they don't work in the brain , there's plenty of medicines . Benadryl is a great example . It can give you acute confusion in the right stages in your life . Older individuals can have that happen . So you look at are there causes for this to be worse , outside of the disease itself , something exacerbating this symptom ? Amantadine is a classic medication that will make these symptoms worse . So not only do you want to look at how the disease is affecting the brain , you want to look at the medicines , all of the medicines . You want to look at the environment . Do you have appropriate lighting that might reduce the misperception of something ? You want to look at your hydration and also make sure that the individual , especially if they have a sudden change in these symptoms . You want to assess for an infection like a UTI .

Speaker 3 1:54:37

There are treatments for hallucinations and delusions caused by Parkinson's disease with dementia , and one of them is Pemivanserin , and it takes a while for it to work . It is effective for many people , but it doesn't mean it's the right treatment for everyone . You definitely in the early stages . If someone with Parkinson's has the very early symptoms , usually they'll say you know , I saw somebody walking past me , or they'll start to hint that there's something going on . You want to call your provider as soon as they start to say something's going on . I have a little bit of a funny story where I've had someone say that they were seeing roaches and the family said , oh , that's probably a hallucination . And no , they were seeing roaches . So don't dismiss everything as a potential hallucination .

Speaker 3 1:55:39

If someone is experiencing it , I highly recommend not arguing . Maybe say are you seeing someone ? Ask them maybe , what they're seeing . Try to provide reassurance we are safe . I'm going to make sure that person's safe and then maybe consider redirecting them to another room . Think about something else . Give their mind an opportunity to let go of what they're focused on and we do have some specialists in memory disorders that can also help address these symptoms as well . And in general , I would say the other resource I really love is the Lewy Body Disease Association has some really great resources for care partners , including videos and handouts . But you want to let your providers know so they can at least make sure . At the very least can we reduce or change something that's adding to the problem . It is a horrific thing to be sitting there and believing that you are . Usually it's a feeling of being attacked and I can't imagine what it feels like , but most people describe it as fearful and scary .

Speaker 1 1:57:09

And very real in their minds . Okay , we've learned so much from you guys today . Thank you so much , but we're going to start to wrap this up . Just a few more questions , and so what are some of the biggest misconceptions about Parkinson's that you'd like to clear up ?

Speaker 4 1:57:22

I think one is that Parkinson's is a disease of a tremor and there is so much more as we've been talking about all the non-motor symptoms that can be listed on several pages . And there is so much more as we've been talking about all the non-motor symptoms that can be listed on several pages . And it doesn't mean that anybody with Parkinson's is going to get every one of those . Nobody's going to get every one of them . But it's so much more than just a tremor and I think that's why I was so confused with our dad , because his tremor was very , very mild and it was just hard to believe that he really had Parkinson's . Another misconception is that it's a disease of the elderly . As Laura said , michael J Fox was diagnosed when he was 29 . We have a mutual friend who was diagnosed when she was 37 . And so it does affect people earlier .

Speaker 3 1:58:19

So that's all I have . I think one of the misconceptions I usually talk a lot about is that we are able to kind of predict the progression for each individual . While I think that we have ways to maybe help us understand , we still don't know how to do that . Another one that I sometimes myself take for granted is if an individual with Parkinson's disease looks pretty good , that they feel good and that's not always the case we need to talk about all the things that they may be experiencing , Because even if you don't see a tremor , you don't really notice much change because the medicines are working well or they really have mild symptoms . We want to make sure we assess for , as Cindy mentioned earlier , all of the non-motor symptoms , because quality of life is greatly impacted by them and we have potential ways to help , or just sometimes , just sharing it in itself is therapeutic , just the sharing and letting people know .

Speaker 3 1:59:19

Also , one that I sometimes get asked is will the medicine stop working for me after so many years ? Parkinson's is gradually progressing . So we do adjust the medications and adapt . You know how you do certain things , but the medications usually are having a benefit throughout the person's walk with Parkinson's disease . But we just have to manage . Am I going to create more adverse effect than benefit , or what am I doing in regards to their quality of life with this treatment option and you have to be thinking about that on an ongoing basis . It's not one treatment and we're done . This is a continual process with your care team , and I think that is kind of what I would encourage most folks to know is that there's usually either new treatments or adjustments in treatments that we have , and not to just say , oh well , I read that it's going to stop working in 10 years . That is not true .

Speaker 1 2:00:26

Yeah , and that segues into a misconception I'd like to mention . I think sometimes people think , well , gee , we need to hold off on the medication the carbidopa , levodopa and just suffer with the symptoms for another five , 10 years because it's only going to have a five 10-year lifespan . But that's not true . You can go ahead and start it . It's going to improve your quality of life and if you don't start it , you've lost that window of really having some good quality there and then , as your disease progresses , you can adjust the dose and it'll stay active . So I think that's an important misconception there . That's right , I agree , okay , well , let's see now , if you could change one thing about how we approach Parkinson's in the medical community or as a society , what would it be ?

Speaker 3 2:01:05

This is a deep question . So I think , one of the biggest challenges we have some knowledge and understanding , but how would I go about removing some of these risk factors in our culture , in our society ? How can we do this ? How can we successfully address ways that we know can impact the risk of not only Parkinson's , by the way ? So if you were to ask me , my goal would be that nobody had Parkinson's disease or any neurologic disorder that impairs their life . And if we know that there are these risk factors , I think as health care providers , we think about treatments .

Speaker 3 2:01:53

I think that a lot of us are now thinking about prevention more and more . So that's probably one of my . We need to all get together and start thinking about our global health , or our community health , If you want to think just within your little community . What can be done ? There's also outside challenges you mentioned before , where we don't have enough medical providers .

Speaker 3 2:02:25

So part of me thinks in the future , if I have a way to slow or reduce the progression of Parkinson's , how am I going to help that person that has very early prodromal symptoms , before they start to develop motor symptoms ? So thinking ahead in those ways , I think , is a challenge that we should be discussing in those ways , I think , is a challenge that we should be discussing . We may not have a formalized way that we're aware of , but when we do , are we going to be ready to help folks ? How are we going to walk forward and not be chasing but go ? Oh , I already have this mapped out . We have two or three steps we already have planned and instead of that reactive process that kind of is what our healthcare system has utilized for many , many years .

Speaker 1 2:03:24

So if someone listening wants to support research or advocacy for Parkinson's , where would they start ?

Speaker 3 2:03:30

This is a good question I typically recommend . For example , I work with the American Parkinson's Disease Association . They collaborate with UAB to help support people in the state of Alabama . So we have information on the website that can help people find information about research and advocacy . But there's a lot of other great programs and resources with other organizations . We mentioned the Parkinson's Foundation . Uab does have many clinical trials .

Speaker 3 2:04:07

Even if you just want to learn about what's going on in your area , we have people that are in the physical therapy department studying Parkinson's disease . So if you think , well , I'm not interested in this one area , but I would love to learn more about therapy or exercise . We do have some of that information . If you are interested in advocating for Parkinson's disease , I would first connect with the person that's spurring you on to do that . If it's yourself , what are you interested in ? And then I can maybe help connect you to ways to develop that more , even if it's just talking to somebody else that's done one of these bicycling events We've had them here at Oak Mountain State Park . So I would say connecting either through one of these organizations . Of course you can contact me . I'll leave my information and just making those connections to find what is it that you're interested in and how you can make a way forward in Parkinson's disease through that interest , because really it's going to be about people coming together that are diverse , thinking in ways that nobody else has thought about .

Speaker 4 2:05:29

Also with organizations like Rock Steady Boxing . They always need volunteers .

Speaker 1 2:05:35

Yeah , years ago I heard this really wonderful thing on NPR about park and dance and it was pretty cool , and they actually have volunteers who come in and dance with these park and dance patients , and so that's kind of cool as well . Well , all right . Well , and you mentioned physical therapy . I'll just do a quick shout out to them . A lot of the neurologists have physical therapists they can refer to who specialize in people with neurologic issues like Parkinson's .

Speaker 3 2:05:58

Absolutely LSVT . Absolutely . Ideally , you want someone that's specialized and you know , collaborative you know .

Speaker 1 2:06:07

So is there anything that I've not asked you about that you'd like to share with us before we close ? Have we covered it ?

Speaker 3 2:06:15

I would say you've covered a huge amount . It's amazing and I just would encourage someone diagnosed with Parkinson's disease , that you are not alone . Like Cindy mentioned , parkinson's does try to isolate , but you're not alone and there's a lot of folks that are probably closer than you realize resources or just a listening ear . So I encourage everyone that feels that way to reach out and just know that folks like myself and other people across the state are here for you .

Speaker 1 2:06:53

Well , that's great . As we wrap this up , do either of you have a story of a particular patient or family that really stuck with you you'd like to share with us ?

Speaker 3 2:07:02

I do have one story about how Parkinson's really impacts probably every person listening . They probably know someone . So when I first came to UAB , I was a clinical nurse and would go in and do the what we call interval history , meaning how are you doing since your last visit ? And I would document that for the physician since your last visit , and I would document that for the physician . And about

Final Thoughts and Personal Connections

Speaker 3 2:07:35

my second day working there , I opened the door and I see a gentleman that I had known since I was seven years old and of course he didn't know . You know , I was seven or eight or nine when he knew me and then you know , by the time you're a teenager , you look a little different when you're in your 30s . So he didn't know who I was .

Speaker 3 2:07:55

But when I said , hey , it's me , you know Drayton Lieb's daughter , and his whole demeanor changed and we made a connection . And so I realized in that moment , like just my second day , I was like I realized that there's a connection out there , whether I know it or not , with someone with Parkinson's disease , probably even beyond this gentleman that I had known all my life and that I in that moment I felt like okay , he's here , he's giving , he's giving what I would consider every effort and everything he did , and so I felt like he's here to teach me , and I just want to encourage folks in that you probably have a connection and your connection you can have a positive impact for that person with Parkinson's disease . And never in the back of my mind would have been someone that I had known since I was a little girl . And that gentleman , his wife , led the local Parkinson's support group , and so she taught me the importance of support groups . Mary taught me the importance of support groups and her husband taught me the importance of listening .

Speaker 1 2:09:31

Well , that's a great story . Thank you so much for sharing . So if y'all want to leave your contact information , I'll be sure to put it on the website at mcminnmdcom . It'll be there on the homepage at the very bottom , but also I'll have the guest bios and at the bottom of the guest bio I'll have contact information for you . But that should about do it for our discussion of Parkinson's disease and I thank you so much , laura and Cindy , for joining us today and for bringing your passion , your experience , your knowledge . It's just wonderful to hear it . Thank you so much , and I found it so informative and I hope that our audience did too .

Speaker 4 2:10:02

Thank you , I really enjoyed it , thank you .

Speaker 1 2:10:04

Well , that about does it for this discussion of Parkinson's disease . Thank you so much for listening . We hope we were able to share something with you that was helpful and interesting to you . That's why we do the show . Please do take a moment to rate us on iTunes . These reviews really do make a difference for us . Also , if you like the podcast , then take a moment today to tell a friend about it and help us spread the word on evidence-based , holistic , functional and integrative medicine . If you'd like to reach out to me to comment on the show or to make recommendations for future topics , then you may do so at drmcminn at yahoocom . This is Dr McMinn signing out . Take care and be well .