Building a Parkinson's Care Team – The Key to Better Care and Quality of Life

🚀 Want better Parkinson’s care? It starts with the right team.

In this episode of Live Parkinson’s – Live an Exceptional Life, we dive into the essential role of a Parkinson’s care team and how assembling the right support system can drastically improve your treatment, symptom management, and overall quality of life. Whether newly diagnosed or looking to enhance your care, this episode will guide you through the who, what, and how of building a multidisciplinary Parkinson’s team.

🔹 In this episode, you’ll learn:
✔️ Why a care team is critical for managing Parkinson’s effectively
✔️ The key specialists you need—neurologists, physical therapists, speech therapists, and more
✔️ How to find the right doctors and support professionals
✔️ The role of caregivers and family in supporting your journey
✔️ How to use the Building Your Parkinson’s Care Team Resource Guide & Workbook to create a personalized care strategy

📖 Get your copy of the Resource Guide & Workbook:
👉 Liveparkinsons.com (Home Page)
👉 Ko-fi.com/liveparkinsons

📰 Read the latest article:
📌 Building Your Parkinson’s Care Team: Essential Guide to Multidisciplinary Support → Liveparkinsons.com

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Chapters

• 0:00 Tom's Story: From Isolation to Comprehensive Care
• 2:22 Why a Care Team is Essential for Parkinson's
• 4:04 The New Parkinson's Care Team Resource Guide
• 7:17 Building Your Core Medical Team
• 13:35 Beyond Medical: Specialized Therapy Support
• 18:45 The Role of Family and Respite Caregivers
• 26:05 Organizing Your Team and Resources
• 31:53 Inside the Resource Guide and Workbook
• 38:40 Taking Action and Final Thoughts

Transcript

Speaker 1: 0:11

Hello, welcome to Live Parkinson's Live an Exceptional Life. I'm your host, chris Kustenbotter, and I've been living with Parkinson's for 15 years. This podcast is all about helping you navigate and live a great quality of life with Parkinson's through sharing the latest research, personal experiences and actionable strategies to help you thrive. Today's topic is building a Parkinson's care team the key to better care and quality of life. I remember a conversation I had with a man named Tom. Tom had been living with Parkinson's for about five years, but he said he was feeling lonely and fighting an uphill battle. He said his doctor prescribed medications, but he said he had really not done any physical or speech therapy, was struggling to find nutritional advice and also emotional support through support groups. His wife Lisa was doing her best as his caregiver, but she also said she was overwhelmed and exhausted. They didn't know where to turn for help or how to put together the right team of professionals to support them. That's when I told Tom about the importance of building a Parkinson's care team a group of medical experts, therapists and supportive people who could work together to help him manage his symptoms and help take some of the stress and burden off of the caregiving of his wife Lisa. The care team could also help him maintain his mobility, stay active and engaged in social activities and live a great quality of life with Parkinson's. I told Tom that I built a Parkinson's care team 12 years ago and it has helped me live a great quality of life with Parkinson's since then. Tom listened to my story and took my advice seriously, and today he has a care team that includes a movement disorder specialist, physical therapist, speech therapist, occupational therapist, a fitness trainer and nutritionist, and then he's got family members and caregivers, and also now he attends a Parkinson's support group. He said he and Lisa are no longer alone on this journey and the difference in how he's living his life is incredible. That's exactly what we're talking about today how to build the right care team so you get the comprehensive care you need to live your best life with Parkinson's.

Speaker 1: 2:21

So let's look at why a Parkinson's care team matters. So you may be thinking to yourself so, Chris, why is a care team so important? You said you had developed one. Well, that is a great question, because my guess is that not a lot of people with Parkinson's have a care team, and the reason that they're so important and beneficial is because Parkinson's affects more than just our movement. It impacts our speech, our mental health, digestion, sleep, mood, all of those things.

Speaker 1: 2:50

And having a single doctor isn't enough. You need a team of experts who work together to address each of the aspects of your health, as well as a group of caregivers to help you manage your care and live your best life. This way, you have people experienced in a broad range of areas that impact your care, so you have someone that can take care of your balance and your gait. You have someone that can help you with, let's say, you have anxiety, someone to help you with your sleep. You can have a nutritionist. All these people can help you. So one of the benefits of having a strong care team help you is that they can help you manage your symptoms more effectively, improve your mobility and independence, reduce your stress and the stress for caregivers as well, and they can help you stay informed about the latest Parkinson's treatments and strategies.

Speaker 1: 3:38

But how do you find the right people to put together a team that works best for you? That's where my new Building your Parkinson's Care Team Resource Guide and Supplemental Workbook come in. Now I created a 35-page Building your Parkinson's Care Team Resource Guide and a 22-page Supplemental Workbook that was based on my experience on building a Parkinson's care team, as well as input from all the different specialties on a Parkinson's care team and the ones that I've had interactions with over the course of my Parkinson's journey. So it's a collaborative effort of personal experience and working with medical and health professionals to put together a document that can help you build a Parkinson's care team to get the best care that you can possibly get. So the intent was to make the process easy for you. So it's really it's a step-by-step roadmap to help guide you and help you identify key professionals that you're going to need, from a movement disorder specialist, neurologist, to the different types of therapies that are out there Physical therapy, speech and occupational therapy. It addresses a nutritionist, mental health professionals for anxiety, depression and any other type of issues that you may have. A fitness trainer, which a lot of people don't think about, but we talked before about the importance of exercise and how it's one of the keys to help you maintain your mobility and independence. So a certified fitness trainer, preferably one that has some experience with Parkinson's, is very beneficial.

Speaker 1: 5:12

And then the guide helps you communicate effectively with your care team. It helps you organize your medical records, appointments and medications. It includes how to find support groups and community service resources. It includes how to find support groups and community service resources. It discusses how to reduce caregiver stress and improve communication between family members and your health care providers, because sometimes there's a disconnect between what you think and what your health care provider thinks. It also includes a section on financial planning and insurance, which a lot of times we don't think about. But whether we're staying independent and living in our house, or whether we're moving to assisted living or we need skilled nursing, we need to be able to plan for those, and so there's a section on financial planning and insurance to make sure that you're covering yourself. And then staying organized and overcoming challenges are part of the plan, as well as resources to help you with the process.

Speaker 1: 6:06

It's a soup to nuts guide on starting from step one and working through until you have your Parkinson's care team put together and you can grab your copy. It's available on liveparkinsonscom. On the homepage, underneath the mission, you'll see it'll say new building your Parkinson's care team resource guide and you can click to get your copy. Or you can visit my Ko-fi page, ko-ficom slash live Parkinson's and it'll take you to the shop and you can get it there, and then I'll leave links in the podcast description. Now I've developed a lot of free resources in the past several years, for instance, nine balance exercises for improving your balance with Parkinson's, and we have the free monthly newsletter. I have a free resource guide on there as well as a free symptom tracker. Now, unfortunately in this case, due to the time commitment and development and production cost, I do have to charge a nominal fee for the document, and the proceeds are going to be used to help support the podcast, the website and developing future resources, as well as donating to Parkinson's foundations to help push forward Parkinson's research.

Speaker 1: 7:12

All right, so let's look at the key steps on how to build your Parkinson's care team. Now, I don't know about you, but I'm a very simple person and I like to break things down into smaller, simpler tasks, especially things that are a little bit more complex. So that's what I decided to do with the podcast is to take how to build a Parkinson's care team and we'll break it down into a step-by-step manner. I thought it'd be easier that way and hopefully it's easier to follow along. So let's start off with step one and start with your core medical team. I'll share my Parkinson's diagnosis story and then how I came to select the doctor that I see now and I've been seeing him for the past 14 years and then we'll talk about some of the other core medical people that you need on your team.

Speaker 1: 7:57

When I was 46, I started to experience a tremor in my left hand and I was dragging my leg when I walked. We'd go for a walk in the evening and my wife would. And I was dragging my leg when I walked. We'd go for a walk in the evening and my wife would say you're dragging your leg. So we decided to see a neurologist to see if they could diagnose what the problem is. So, after the initial wait to get an appointment with the neurologist, I was able to get an appointment with Dr R and DrR really listened to me explain my symptoms and I also told him what an emergency room doctor told me when I was on vacation.

Speaker 1: 8:29

When my hands started shaking, my wife said You're going to the emergency room and I said no, I'm not. She said yes, you are, and I said no, I'm not. Well, a half hour later I'm sitting in the emergency room and they told me that it's probably stress. So he did an examination and said Well, sometimes there is underlying stress which can cause shaking. He said let's see if we can rule that out. So he prescribed some medication and said that let's have you try some meditation and mindfulness exercises as well. So we scheduled a follow-up appointment in six weeks to see if that solved the issue or if anything else needed to be done.

Speaker 1: 9:10

Well, during that six-week period my leg dragging was getting worse and so was my tremor. So I called the office and Dr R said come in. And so I went in and he said well, it looks like we've ruled out stress and anxiety. Maybe you have a nerve conduction issue. So we scheduled a nerve conduction test to see if this was the issue. Now, while the nerve conduction test was fun and all well, no, not really. The good thing is the results were negative in terms of having a nerve conduction problem.

Speaker 1: 9:40

So then Dr Ars decided to try a Parkinson's medication at a low dose, and after the second day the tremor had almost stopped and Dr R said he believed that I had Parkinson's and said that he suggested that I see a movement disorder specialist Because they have expertise in managing Parkinson's patients. He suggested that I go to the University of Maryland Neurology Group. He said that's where he went to medical school and they have an excellent Parkinson's program. So he referred me to the University of Maryland Neurology and I've been a patient there for the past 15 years and I have to say I've had great quality of care and very pleased with my movement disorder specialist and my quality of life after 15 years with Parkinson's. Not only did I receive great care from the movement disorder specialist, but going down to a research center like the University of Maryland also gave me the opportunity to participate in a number of clinical studies, and the most memorable study for me was a double-blind placebo-controlled study that followed by a 12-week open-label study that was for an inhaled form of dopamine, and the benefit was I had the opportunity to work closely with the movement disorder specialist, the clinical staff and I even got to work with the pulmonary group because they had to test if there was any pulmonary issues with the drug, and it was a great learning experience in the drug development process and the study I was in. The drug ended up being reviewed and approved by the FDA for market about 12 to 18 months after I completed the study. So I felt good that I was able to participate and help bring a beneficial drug to the market. All right.

Speaker 1: 11:22

So one of the questions I get asked a lot is well, why should you see a movement disorder specialist? Who are they and how are they different from a general neurologist? Well, first, it's important to note that movement disorder specialists are neurologists, but they have additional training in diagnosing and treating conditions that affect movement, like Parkinson's dystonia. Where they're different from general neurologists is first, they get more specialized training. So after they complete their neurology residency, the movement disorder specialists typically spend an additional one to two years doing a fellowship training focused specifically on movement disorders, and this extra training is going to equip them with in-depth knowledge of their conditions and the treatments that are available. And then, second, is their expertise in complex cases. Movement disorder specialists are skilled at managing challenging cases. They can fine-tune your medications and they can even help address a lot of the side effects that you either see from Parkinson's or some of the medications. They're also familiar with advanced therapies like deep brain stimulation surgery, as well as the new focused ultrasound. And then, third, is their focus on their movement disorders. While general neurology tends to treat a wide range of conditions like epilepsy, multiple sclerosis, they see Parkinson's patients.

Speaker 1: 12:47

Movement disorder specialists dedicate their practice to movement disorders and that allows them to stay updated on the latest research and treatments that are available. So they usually attend a lot of like the World Parkinson's Conference and a number of other conferences where they can learn from other movement disorder specialists as well as from corporate and governmental agencies. And then, finally, you get a comprehensive care with a movement disorder specialist, because they often work with multidisciplinary teams like physical, speech and occupational therapy. They often have connections with behavioral health. Maybe some of them have connections to nutritionists, so they're able to refer you to these particular specialties to help give you a holistic approach to your care and to address both your motor and non-motor symptoms.

Speaker 1: 13:42

Okay, so now that we understand how a movement disorder specialist is different than a general neurologist, what are some of the benefits of seeing a movement disorder specialist? Well, first is they can provide an accurate diagnosis. Movement disorder specialists are skilled in distinguishing Parkinson's from similar conditions and in ensuring a precise diagnosis, because nobody wants to be told, hey, you have Parkinson's, and then two or three years later you find out, no, I don't have Parkinson's. Secondly, they optimize your treatment plans. They have expertise in managing both your motor and non-motor symptoms, and they can fine-tune your medications and address side effects. According to the article what Does a Movement Disorder Specialist Do? By the American Parkinson's Disease Association, movement disorder specialists do by the American Parkinson's Disease Association. And then third is the access to advanced therapies. Movement disorder specialists are often involved in clinical research and are aware of the latest treatments and technologies they provide, so they give you comprehensive care. And again, it's by working across our multidisciplinary teams, including physical, speech and occupational therapy, sleep doctors, mental health. And if you want to learn more, I wrote an article on liveparkinsonscom titled Five Authentic Benefits of Seeing a Movement Disorder Specialist. And again, if you go to liveparkinsonscom and look under the blog section, you'll be able to see the article that I wrote.

Speaker 1: 15:07

Some interesting data published by the Michael J Fox Foundation looked at a study using 2019 Medicare data, and what the study revealed was that only 9% of people with Parkinson's in the US received care from a movement disorder specialist, despite evidence showing that specialized care improves your quality of life. So patients under the care of a movement disorder specialist are more likely to receive personalized treatment plans and better symptom management. So that's why I personally and highly recommend seeing a movement disorder specialist. Now, does that mean you won't get good quality care seeing a general neurologist? No, absolutely not. General neurologists can provide great quality of care as well. Sometimes there are limiting factors to seeing a movement disorder specialist. So, for instance, where you live. You might live in a rural area where there's not great access to movement disorder specialists, so you see a neurologist. Now I'm not insinuating that you get less care with a general neurologist, but I still do recommend seeing a movement disorder specialist because of the benefits that I discussed.

Speaker 1: 16:16

All right now, movement disorder specialists are just one part of your medical care team. Other key players on your core care team is your primary care physician and they're going to work in conjunction with your movement disorder specialist to provide ongoing care for you. And then physical therapy Physical therapists can provide plans to help you with your balance, your gait, your flexibility, pain and now. I've personally visited and conducted physical therapy training three times a week for four to six weeks during the course of my 15-year journey with Parkinson's, and one of the things I really liked is they developed a plan to help me improve my balance and my gait because I was dragging my left leg when I was walking. Now, the nice thing about the plans that the physical therapists put together are that they can be done both in office and at home, and preferably they want you to do them at home as well, to reinforce what you're doing in the office and you're actually going to help reach your goal a lot faster as well.

Speaker 1: 17:16

Now I will tell you that there are no gentle stroll through the park exercises. So when you go to physical therapy, they push you to improve, but they also know what your limitations are and how far to push. Now, all three times I visited a physical therapist, I was able to improve from where I was at baseline, and so if you're having mobility, balance or gait issues, don't be afraid to ask your doctor for a referral to see a physical therapist. Most of the time they'd be more than happy to send you there because they want to see you improve in your mobility and your gait. So if you feel like you're having trouble, just say hey, can you refer me to a physical therapist, and then they'll contact you and you go in and they'll do an assessment and then put a plan together for you. All right, in addition to the core medical team, there are other specialist support personnel who can play a key role in your care.

Speaker 1: 18:07

Now these would include speech therapy, and speech therapies not only can help you with a soft speech, but they can also help you with address swallowing issues, because a lot of times we know, as Parkinson's progresses, people start having some difficulty with swallowing issues. I've personally visited a speech therapist on two different occasions. Gabrielle, because my friends were and family were telling me I was hard to hear and that I needed to speak up. Now, of course, I told them they probably had a hearing problem, and Gabrielle was wonderful and helped me not only to improve my volume, but she also taught me to be able to project and that way people could understand what I was saying a lot better. Now my friends and family said they definitely saw and heard an improvement after I saw the speech therapist. So I highly recommend speech therapy because it can definitely help you address soft voice and any type of swallowing problems that you may have.

Speaker 1: 19:09

And then next up is occupational therapy, and they can help you with daily tasks by giving you specific exercises to work on, and they can even do home visits. You know, you can say call up and say can you. I'd like an occupational therapist to come and assess my home and ensure things are safe around your house. They may make recommendations for adding things like grab bars or more lightened hallways, removing loose rugs, those type of things. Now I have seen a occupational therapist and the reason I went was to help me with my fine motor skills, especially in my hand with the tremor. I had seen a drastic reduction in my fine motor skills and it was really becoming difficult to do some of the tasks that I needed to do, as well as it was really hard to participate in two of my favorite hobbies, which were playing the guitar and fly fishing and fly tying. So fly tying requires a lot of, you know, fine motor skills, even just to put the hook in the vice, and so I was, you know, having trouble with that, and the occupational therapist gave me specific exercises that I could do daily to help me improve my fine motor skills, and one of the things they also recommended was using a weighted glove to help with the tremor and reduce the tremor and make it easier to complete the things that I wanted to complete.

Speaker 1: 20:28

Now, another specialty area that is often overlooked is mental health specialist. Now, I know there's often a stigma of seeing a mental health specialist because people often think that, well, there's me, think that I'm have a mental health problem, or you know that I'm crazy, you know but it is important to keep in mind that a large percentage of people with Parkinson's experience anxiety and depression. Now, I have no issues telling people that I went to see a mental health professional because I was having anxiety and panic attacks which were related to the Parkinson's, and so they gave me techniques to work on, and one of those techniques was cognitive behavioral therapy. So I have very few problems with anxiety anymore or panic, and so I still use cognitive behavioral therapy today to help manage issues with anxiety or stress, and if you want to learn more about it, you can listen to my podcast that's entitled Parkinson's and Anxiety how Cognitive Behavioral Therapy Can Help you Take Back Control. Now, I've always believed you need to do what's best for you and not worry about what others think, so if you're experiencing some issues, please consult a mental health specialist. They can really help you out.

Speaker 1: 21:44

Another specialist to consider as well is a sleep disorder specialist. Another specialist to consider as well is a sleep disorder specialist and, as my Parkinson's symptoms have progressed. One of the major non-motor symptoms that I have issues with is the effect on my quality of sleep sleep issues. Now I have no problem falling asleep. It's I often wake up several times to use the restroom and then have trouble falling back to sleep. Or I start waking up at 2 am and then by most days I'm out of bed between 2.30 and 3.15, regardless of what time I go to bed. So if I stay up till 11 pm, I'm still waking up between 2 and 3. So that only gives me about three to four hours of sleep and you do that over a number of days and it really does begin to take a toll on you All. Right now, one of the benefits of the sleep specialist and I've seen one of those as well, so I pretty much run the whole gambit of seeing everybody on the Parkinson's care team but she gave me some sleep hygiene tips and she also made some adjustments to my CPAP machine for sleep apnea and they definitely have helped. So after seeing a sleep specialist and implementing the recommendations, I actually do feel more refreshed when I wake up in the morning and don't experience as much sleepiness and fatigue as I did in the past. Finally, last but not least, is a nutritionist or dietitian, and they can help you evaluate your current diet and make recommendations to help you to health your diet and ensure you're getting the appropriate amount of macronutrients the proteins, fats and carbohydrates, as well as micronutrients the proteins, fats and carbohydrates, as well as micronutrients, your vitamins, minerals and antioxidants. And I met with a nutritionist as well and she put together a recommended nutritional plan based on the foods I like and that would help me on my Parkinson's journey.

Speaker 1: 23:30

Okay, well, your core medical team is the driver for managing most of your Parkinson's motor and non-motor symptoms and your overall quality of life. It's important to note that Parkinson's, again, isn't just physical. It impacts your mood, your cognitive function and your quality of life. A specialized therapist or counselor can help you address the non-motor symptoms that are impacting your daily life. So it's important to involve caregivers and family members into your care plan Spouses, children and friends who can provide the emotional support and the practical support like getting your medications or driving you to appointments or sitting in the visit when you go to the doctor, taking notes so you don't miss anything that the doctor might be stressing during the visit. They can drive you to appointments. They can help you fill out your insurance paperwork, they can help you with financial planning or just any of the daily finances or daily tasks that you need to do. So it's important to have a strong network of friends and family that are there to support you so that your primary caregiver, whether it's a spouse or whoever it happens to be, doesn't experience burnout and frustration.

Speaker 1: 24:43

Now, as a personal example, I don't drive long distances anymore because I get fatigued and I don't want to cause an accident and kill somebody else. So when I'm visiting my family where I grew up, which is about two hours from where I live, my brother or a friend usually drive down to my house and pick me up and drive me back up, and a lot of times my wife, mary and I will meet them somewhere halfway between. And now I hate not being able to drive myself long distances and I feel like a burden on my family and friends. It's the best option for me and it helps keep me from driving off the road after being on the road for a long time. Also, they said that if the rules were reversed, I would do the same thing for them, which is true.

Speaker 1: 25:31

Now, another area to consider is respite caregivers. Now, another area to consider is respite caregivers, and they can assist your family members and help you reduce the burden and potential burnout for caregivers. So remember, being a caregiver is tough, but support is available to take advantage of so that you can get all the help and support you need. And so respite caregivers they'll come in and I'll be with you while your spouse or caregiver goes and gets some you know personal time to do what they want to do. So I guess my public service announcement is you know, if you're a caregiver, don't try to do it alone.

Speaker 1: 26:09

The next step is to connect with community resources. But you know, make sure that you include help as part of your care team, because you need to take some time for yourself as well. And finally, you want to connect with community resources. So what does this mean? Well, you can identify and attend Parkinson's support groups to help you stay actively engaged, because one of the things you don't want to do is become socially isolated, because then that just tends to spiral down into the black hole and you become lonely and it just goes on from there. So one of the benefits of being in a Parkinson's support group is you get to hear other people's stories and how they overcome their challenges, especially the ones that come with you know Parkinson's. And then many support groups also have activities that you can get involved in, like whether it's a bus trip or, you know, painting day, or maybe it's something with music dance. So there's a lot of different activities that support groups have available and other support group resources besides in-person you can have. They have their different online communities, like. There's a Facebook, several Facebook communities that you can join and participate in. There's Reddit and other places on the internet and you can learn from others in an online format. So if you don't like to go out and interact, they're available there as well. And then, finally, look for local programs, which are often supported by grants and are free to use, and consider participating in local exercise programs like Rock Steady Boxing, or I teach a weekly Pedaling for Parkinson's class, which is sponsored by the Davis Phinney Foundation. There's also a dance, yoga and tai chi classes that you can find locally to help you with your balance, flexibility and gait. So consider surrounding yourself with people who understand your journey and it really can make a big difference in your quality of life. So visit the Parkinson's Foundation website and they have a support group finder to help you find the resources in your area.

Speaker 1: 28:20

Now, another key piece of building your care team is reviewing your insurance coverage and finances and developing a financial plan. Now I've included a unit in the Building your Parkinson's Care Team Resource Guide and a fillable worksheet in the workbook. So staying organized and overcoming challenges is another key piece of that. So make sure that you consider finances and insurance, because that's going to be one of the key drivers going down the road as well. In addition, as a team, you need to figure out how you're staying organized. Are you going to communicate over email, phone, in person, through letters? There's all kinds of different sites out there that you can almost do like a project management. There's one called ClickUp where everybody has tasks and you can put in the dates and times and things like that when they're due. So staying organized and then overcoming challenges is another key piece of the puzzle, and I've included sections on these two topics, including some of the websites and apps that you can use for communication, tracking and organization, and then how to overcome challenges.

Speaker 1: 29:30

Other tools that can be used to help you and your care team be successful are you know a symptom tracker which you can use to track and monitor your symptoms, both motor and non-motor symptoms, and in terms of the type of symptom, the severity, the time of day, how bothersome it is for you, and you can share this with your doctor and that can help them get a picture of when you're having the most difficulty throughout the day and they can make medication adjustments to help you with that. In terms of the symptom tracker, if you visit liveparkinsonscom, there's a free symptom tracker on there as well that you can use, and another key area to track it is your list of current medications and there's a free medication tracker in the resource guide for voting your Parkinson's care team. So you list your medications, the dosage, the color, all that, so when you go to the doctor you can have a list all ready to go and that way they make sure that the medications you're taking are the ones that they have in your records as well. And, finally, if you need to keep a medical notebook to write down any key information, like your insurance information, notes from your doctor, any correspondence with the doctor you receive in terms of clinical summary notes from your visit, notes and requests you sent to your doctor, and your next steps and action plan.

Speaker 1: 30:54

Now, remember you don't have to do it all at once. So start with one or two professionals, build your care team over time. The key is just to start. You know, as the Indian proverb used to state, that the journey of a thousand miles begins with a single footstep, and that's so true. So realize that it takes a little bit of time to develop a care team, so it's not going to be perfect. So if we at least get started and we're making progress, we can make adjustments. But if we don't start in paralyzing ourselves because of, well, I need to plan more, I need to do some more research, then you're not going to get the comprehensive care that you need.

Speaker 1: 31:52

So, as we wrap up today's episode, I wanted to leave you with one key takeaway, and that's you don't have to face Parkinson's alone. The right care team can be the difference between just managing your symptoms and truly thriving with Parkinson's. So having the right doctors, therapists, caregivers and support network in place is going to allow you to stay active, independent and in control of your health. And that's, again, that's why I created the Building your Parkinson's Care Team Resource Guide and Supplemental Workbook. It's to give you a clear, step-by-step plan to assemble the support system you need to live your best life.

Speaker 1: 32:28

And again, it's based on my own personal experiences living with Parkinson's and, believe me, I've had struggles along the way because I wasn't sure where to turn when issues arose. So the first three years before I had a Parkinson's care team, I was lost in the desert myself because I'm thinking where do I go to get all these resources? And so, luckily, my movement disorder specialist helped me find some of the specific care I needed by referring me to various specialists like physical and speech therapy, sleep specialist and a nutritionist, and I was fortunate and made many friends in those areas, and they provided me with all kinds of information on their experiences, which I've included in the guide as well. So I want to mention the importance of exercise in a possible and include a certified personal trainer with experience in Parkinson's as part of your care team. And one of the most important things I learned when talking to the specialist was when I was developing the guide is that many people with Parkinson's don't take advantage of the services they provide, and that's why I felt compelled to put this resource guide together, because, whether you're newly diagnosed or you're confused or frightened of what's ahead and what's next and you're not sure what to do, or your caregiver is looking to provide you with the best care, or if you're a person living with Parkinson's looking to improve their quality of life, hopefully the resource guide will get you the right resources so that you can say, oh, that's what physical therapists do and here's why I need to go see one. Hopefully, the resource guide is going to be a tool to get you the best care you need so that you live your best quality of life, meaning you stay active and engaged in the activities and the hobbies you enjoy. Okay, so what's inside the resource guide? Now, as I mentioned, it's your roadmap for creating a care team that truly works for you, and the guide is you want to personalize it to get the best possible care for your specific needs. So here's what's inside the resource guide.

Speaker 1: 34:26

Chapter 1 is why a strong care team matters, and you'll learn the benefits of a care team and identify your specific care needs. Chapter 2 is understanding the roles in the care team and identify your specific care needs. Chapter two is understanding the roles in the care team. It discusses the role of the movement disorder specialist, what physical, occupational and speech therapists do, mental health professionals and so on and so forth. Chapter three is building and maintaining a cohesive Parkinson's care team. So this chapter is going to provide some specific questions to help you identify and select the best specialist for you. So it has questions to help you select a movement disorder specialist, physical and occupational and speech therapist, and it's important that you have a good rapport and connection with your specialist so that they get the best care for you that you can possibly get. And the chapter also has you evaluate your team needs and tips for building trust and communication within your team.

Speaker 1: 35:24

And then chapter four covers creating the core plan and it outlines the smart framework for setting goals, tools for tracking progress and coordinating your goals across your care team. Chapter five discusses financial planning and understanding the cost of Parkinson's care, and it gives you some tips for managing costs and navigating insurance, finding affordable care and planning for the future with wills, trust and funds and charitable contributions. And then chapter six is all about staying organized and it provides a lot of recommended tools to help keep you and your team organized within the process. Chapter 7 is going to help you overcome challenges and provides a lot of the different common challenges that you may experience, and then it gives you strategies for overcoming them and includes a section on staying optimistic, resilient, on your Parkinson's journey. And then, finally, chapter 8 provides a list of resources that you can reference and use to help you build the best possible care team. So let's provide an overview on how to use the supplemental workbook just to get the most out of the resource guide.

Speaker 1: 36:33

The workbook is really more than just a companion document. It's a practical tool that's going to help you take action, and it includes care team planning sheets and that helps you map out your doctor, specialist and caregivers and how to evaluate your care team In terms of creating your plan. There's a section for setting specific goals for the team, how you're going to track your progress. There's a section for setting specific goals for the team, how you're going to track your progress and identifying your short and long-term goals and how you're going to maintain a good quality of life. There's a financial planning workbook to help with financial and insurance needs, a section on staying organized and defining roles and responsibilities within the team and then anticipating challenges and developing plans to overcome the challenges. And then, finally, there is a medication tracking tool to help you prepare for your doctor visits.

Speaker 1: 37:25

Okay, chris, this sounds nice, but why do I need this guide? No, that's a good question. Ask yourself this question have you ever felt overwhelmed by Parkinson's, struggled to find the right doctors or specialists, or just wish you had a clear plan to manage your care? Now, if you answered yes, then this guide is for you. It's for anyone living with Parkinson's, their caregivers and family members who want to be proactive about their personal care their personal care Now. Remember, parkinson's has an impact on the entire family, so don't wait until symptoms, progress or challenges arise. Build your care team now so that you're prepared for whatever comes down the road, and building your Parkinson's care team resource guide and workbook is your action plan to take control of your Parkinson's journey.

Speaker 1: 38:11

Now to get your copy again, visit liveparkinsonscom and on the homepage under the mission statement, you'll see a new Parkinson's care team guide. Just click on the guide and the button to access the document, or visit my co-fee page at co-feecom. Slash libparkinsons and visit the shop, and I'll leave links in the podcast description. Now I do have to charge again a nominal fee for these documents because of the research and production cost, and I mentioned earlier what the funds will be used for supporting the podcast, the website and developing new materials and donations to Parkinson's foundations. So the intent is to help others live their best life with Parkinson's. So also don't forget to subscribe to the free monthly newsletter on liveparkinsonscom. And thank you for listening and until next time, stay healthy, stay strong, stay informed and keep moving forward. And remember live your best life with Parkinson's.