What should you expect after a Parkinson's diagnosis? (No Doom...

By: Invigorate Physical Therapy and Wellness

- Hey guys, welcome back to another Facebook Live broadcast. My name is Sarah King. I am a Parkinson's physical therapist, and owner of Invigorate Physical Therapy and Wellness here in Austin, Texas.

And at my practice, I'm 100 specialized in helping those diagnosed with Parkinson's, empower themselves, educate themselves, and build a personalized Parkinson's plan that helps not only improve their vitality, and their mobility, and their independence now, but also for the long run. So, I am so excited to talk with you guys today all about what you can expect once you've been diagnosed with Parkinson's. And this a really sensitive subject.

And so I'm going to just preface this entire thing with I promise there's no doomsday talk in this segment, because I know that there are plenty of naysayers, plenty of fear mongers all over the interwebs. And I promise that this is going to be a space that is only encouraging, end empowering, and educative, so that you can feel safe here. So, please don't run away. I know that a lot of you stray away from this type of talk, but I promise to respect your fears and only keep it on the positive side, because there are so many positive sides to be seen.

We don't have to play in the what-ifs, we don't have to play in the fear. So we are going to talk about two of the most powerful things that you can do immediately after a Parkinson's diagnosis. Then we're going to walk through a little bit of how to start building your individualized Parkinson's plan, and then give a little shout out and a little love to the crucial and delicate role of a Parkinson's care partner. So I want you guys to stay tuned. As you guys roll in here, please just say hello in the comment section below. As I mention different resources, we have our wonderful moderator Lauren in here to give you links in the comments section below. Depending on when you're watching this, they may also be listed below this video.

What should you expect after a Parkinson's diagnosis? (No Doom...

So we're going to give you plenty of resources, plenty of things to empower yourself with. And with that being said, the first thing that I do want to mention is that I wrote a short ebook, which just means an electronic book. That's available for download for free for you guys, and the link should be either above or below this video. It's invigoratept.com/ebook. And what I did was I had so many people contacting me, asking me what they could be doing around their Parkinson's diagnosis, that I wrote an eight-step ebook called Building a Foundation, an eight-step guide to getting the most out of your Parkinson's treatment program.

So there are eight steps in there. They're pretty simple, a great way to get started. And when you download the ebook, you also get weekly emails from me, covering all of those topics, helping you implement those new strategies, answering your questions, just being that form of support for you. And that's all for free. I promise, no strings attached, just something from me to you, to help you empower yourself and really feel like you have some control over your diagnosis and your future with Parkinson's. So like I said, as you guys file in, please just say hello in the comment section below. I should be able to see them.

If you're watching this live, I would love to hear where you're coming in from. So, without further ado, let's go ahead and get started, because this is a topic that is really important to me. And it's actually a great question that spurred Invigorate's Genesis. The beginning of Invigorate was a lot of my frustration around expectations that have been set for people who have neurological diagnosis, most specifically Parkinson's disease. And what I find that I hear a lot, being completely Parkinson's specialized is that people come and see me, and this might be you, between like less than three years after diagnosis. A lot of you come to me after, and I'm welcoming you with big open arms. But those people who come to see me almost immediately after their diagnosis, they come to me and they say, "I've heard that Parkinson's is a neurological, "degenerative disease, "and they are..." And you have been so scarred by those three words that you are really reeling to figure out what that means, what the impact is on you now and in the future.

And often times what I hear is that your experience at diagnosis was subpar to say the least. That's probably the best word of your experience at diagnosis. And at worst, it was terrifying and traumatic. Throughout this broadcast, you can interact with me, give me a thumbs up, a happy face, sad face, a heart, something that may resonate with you that you can give me a response to is if your physician looked and you and said, "You have Parkinson's disease "because I've noticed that you have a tremor, "you're moving slow. "I'm sorry, and "you'll probably be in a wheelchair five years from now, "and "there's no cure. "So here's your medication prescription, "and yeah, good luck." And so, if that was your experience at diagnosis, just give me a thumbs up or a sad face, or whichever one resonates for you. That is terrifying. That's one of the..

I hear that more and more. I don't know where some physicians got this five-year number and wheelchair associated with it, but I tell you what, I hear so many people coming to me and saying, "This is my experience, five years in a wheel chair." That was my very first Parkinson's client before I started Invigorate. My very first Parkinson's client came to me and said, "My doctor old me I would be in a wheelchair in five years, "so I don't know what you can do for me." And if you're watching this, you're probably a big believer in empowering yourself, and you know that, that doesn't have to be true, and it's not true for everyone. It's not even true for the majority. And everyone is different, which we'll get into. So, a lot of people have this traumatic experience at diagnosis. And then they come to Invigorate and they say, "What can I expect?" I give a little bit of different perspective, and so people want to know.

What can I expect? How is this whole thing going to play out. And the truth is I don't know. I don't know you. I don't know my clients. I don't have a crystal ball. And the things is neither does your physician.

No one knows what's in store for your future, whether you have Parkinson's or not. And you can either look at this at terrifying, at first it is, because you want something to hold on to, but you can also look at this as empowering because, in the end, your healthcare provider's word isn't gold. My word isn't gold. Nobody knows the future. And yes, it's true that Parkinson's is classified as a neurological degenerative disease, and that it's true, we do not have a cure for Parkinson's at this time. However, that is all we know about Parkinson's as far as prognosis is concerned. And I've heard from thousands, and I'm not exaggerating, I've heard from thousands of people who've been diagnosed with Parkinson's, and every single one of them is different. You have a different background.

You have a different presentation. You have a different support system. You have so many different individual things going on that it's impossible to predict what your experience will be with Parkinson's. Now we have a lot of research that's developing. We have a lot of really smart people who are doing research on Parkinson's, what can be done to prevent Parkinson's, to prevent the worsening of symptoms, what's been know to help with symptoms. We have all of that information, and I think that's what's important to focus on, is the things that we do know that help you improve your symptoms now and maximize your longevity and your independence for the long run. I'm going to share with you a lot of those things today, but I want to just encourage you to do two things.

These are the two most powerful things that you can immediately after diagnosis. Number one is educate yourself, and number two is empower yourself. Those go hand in hand pretty well, educating and empowering yourself.

But the more you know about what you can do to be proactive right now to help yourself with your symptoms, the better your outcomes will be. And I tell you this. 100% specialized in Parkinson's, every single client I see is Parkinson's, everything I do every single day is Parkinson's.

And I will tell you the people who are invested in their own health as you are, because you're watching this video, you wouldn't be watching this video if you weren't invested in your own health, those people, you guys that are watching this do the best. So I want to just give that power back to you, because I know it's been taken away from you. You think that someone else holds the key to your diagnosis. And I just tell you that you can empower yourself with information and resources. Invigorate is a great place to start, so that you can make the most out of your diagnosis and your future.

So I'm not going to sit here and say that Parkinson's isn't challenging. I'm not going to say that everything is roses or that if you do all of these things, your Parkinson's symptoms will disappear. That's not what I'm saying. But you can do everything in your power to learn.

And there are people on this call that I've seen check in that I know do that. And I'm going to give a special shout out to Nora Parham, because she does everything she possibly can. She goes to every single resource and person that she possibly can. I admire the heck out of you, Nora. People like Nora, people like you who are tuning in, I just want to say give yourself some credit. You are doing so much. You're doing enough to learn, and that's the important thing, learn, educate yourself, and empower yourself every single day. And if you do that, then your tomorrow will be better than it would have been otherwise.

So, I want to jump into these two areas, all right? I want to jump first into how to educate yourself. And my biggest message for you and for all of my clients is to start building your Parkinson's plan of attack. I've talked about this before, and I could go into detail, and I will at a later time. But essentially, there are three parts of a Parkinson's plan, and they all revolve around how to maximize your dopamine and protect it in the long run, but they all revolve around dopamine.

Okay, so your three parts of your Parkinson's plan. The first part has to do with maximizing your dopamine. So, dopamine is that brain chemical that's depleted in Parkinson's. And the way that you can maximize the amount of dopamine that you have left circulating in your system is exercise. And what does is it enhances your body's ability to uptake that dopamine into your brain. Okay, so you want to maximize the dopamine that you have. You want to protect the dopamine production cells in your brain that you still have left.

And you have enough of them to function because you're still alive. So you want to protect those like they're gold because they are. And the way that you do that is exercise again, nutrition, avoiding toxins, managing your stress, getting great sleep, anything that is anti-inflammatory is protecting your brain. So you want to protect your brain. So we have maximize your dopamine, protect the dopamine that's left, and then finally, the third part of your Parkinson's plan will be to supplement whatever you, supplement the dopamine up to a level that you need to function properly. So that's typically through your Parkinson's medications.

By no means am I anti-medication. I think that they should be used as a tool to bring you up to a point where you can function and you can exercise, and you've got enough energy to exercise, and you've got enough energy to go see your kids and your grand kids, and have the quality of life that you deserve, because that's what we're here for, right? So, as you start to build your Parkinson's plan, when you're maximizing your dopamine, you're protecting your brain, the number one most important thing that you can do is exercise. Now, when someone ask me the question, what can I expect now that I have a Parkinson's diagnosis? I say, "You can expect to exercise every single day, "exactly like you would take your medication." That's just part of life now, because exercise is medicine. It doesn't replace... Well, let me back track.

Exercise is your medicine. So you wouldn't skip exercise in the same way that you wouldn't skip your medication. Okay? So, I preach this all the time, exercise. I'm a physical therapist. I have a doctorate in physical therapy.

I studied movement, I studied exercise, and specialize in Parkinson's. I have a seven elements checklist, which walks you through the seven elements of an effective Parkinson's exercise program. You can give me a thumbs up if you've read it. If you know the seven elements and you're using them, kudos to you. If you're not, I made a free checklist. You can download it and you can read it over, and use it in your Parkinson's exercise program. And Lauren will go ahead and put the link below. But you want to make sure that you're using an exercise program that has those seven elements that are specific to Parkinson's, because exercise is crucial.

So you can expect to be exercising every single day, day in and day out, even if it's just a little walk or stretch on days that you're really super fatigued, still need to be moving. Okay. The second thing that I wanted to encourage you to do, as you're educating yourself about your Parkinson's plan, is to really investigate the connection between your gut, which is your tummy and your intestines, and your brain. So a lot of you, if you've followed me pretty closely, you know how passionate I am about gut health and the brain.

It's an exploding area of research for Parkinson's, and for a variety of reasons, which is why I created a four-part video series all about how to maximize your gut health. And it's all about nutrition and supplementation for Parkinson's. It's free, and, excuse me, Lauren is going to go ahead and put the link in the comments section below. But know that as you are venturing into this new diagnosis of Parkinson's, one of the best things that you can be doing after exercise is to be getting your nutrition in order and be eating in a way that's healthy for your gut, because your gut and your brain are connected. Okay. Then as far as building your Parkinson's plan, I always get the question about when to start medication. If you've been newly diagnosis, you're probably wondering what you can expect as far as when do I start medication, how long do I take it, what's it for, all of those things.

And I've talked ad nauseam about Parkinson's medications in the past, but here's what I want to encourage you to think about when you're considering your Parkinson's medication plan. You are looking to balance the quality of life that you have and the amount of medication you're taking. It's a balance between how well do you function and how much medication do you take. Okay, so we want to bring you up taking enough medication to where you can function in your daily life, but you're not overly medicated so that your symptoms are wonky, you're feeling fatigued. There's a way to balance it out. But you should be looking at your medication as a tool to help you achieve the highest quality of life possible without inducing secondary symptoms, and that's a challenging balance. We're going to talk about a good way to make sure that you have that check and balance on your team here in a second.

But that's the thought about medication if you're considering taking it. I've also done Facebook Live broadcast, free videos on when to start Parkinson's medications. So that could be the great place to go, which Lauren will share a link here in the comment section below. Okay, so, if you guys are doing okay, just give me a thumbs up. I actually can't see very many of the comments right now, so I was going to give some shout outs, but I can't see... Oh, actually, let me check.

Before we go into the second part of what to expect with Parkinson's, where I'm going to talk about how to empower yourself and some strategies that you can take, including some notes for your caregivers, I just wanted to say hi to some people who are probably checking in via the comments. It looks like Cyril is here. Welcome from Tulsa.

Liz is in Australia. Thank you so much for all this information, so empowering. I'm 46 and was diagnosed a year ago. Liz, welcome from Australia.

I cannot wait to go to Australia to visit. I'm so glad that you're here. Welcome. Okay, we've got John Dos asking a question about medication. I'll respond to you individually, John. I'll put a little link for you. Actually, Lauren just put a link.

If you're wondering about Parkinson's medications, look in the comment section below if you're watching this on Facebook. If you're watching this on YouTube later, the link will also be below this video, but it's Parkinson's Medication 101. It's a Facebook Live broadcast, it's also on YouTube, and Lauren put it in the comments section below.

Okay, that will walk you through all of those signs and symptoms that you're over medicated. Okay? Okay, looks like Judy is coming in from Colleyville, Texas. I'm not sure where that's at, Colleyville, necessarily, but I hope you are dry. It seems like if you've got internet access, you're probably dry.

Hurricane Harvey hit us hard here in Texas, although in Austin it's pretty cool, nothing crazy. All right, Tyler Tracey from Cibolo. Welcome Tyler, welcome back. Okay. Oh my goodness, Ronald. Ronald's back. We haven't seen you in a while, from California.

All right. Judy is in DFW, yep. You guys are doing okay, it sounds like. Okay, thanks for sticking with us, guys.

You're ready for part two? Okay, just give me a thumbs up. I always love seeing those. All right, so, the second most powerful thing that you can do once you've been diagnosed with Parkinson's is to start empowering yourself.

And again, since you're here and you're watching, you're empowering yourself just by educating yourself, but there are some strategies that you can use to further empower yourself and become and empowered client, okay. I call them client, my clients or patients, to be a empowered patient, to really take control of your health and your care. And the first thing that I wanted to do, in case you haven't read it yet, I wrote a letter to my clients that I put on the blog, and it's a letter that I wrote that I wish I could give everyone the day they were diagnosed with Parkinson's disease. Because like I said, the initial diagnosis can be really traumatic, and I think it's important to emphasize that the expectations that are set up for you now, in the early stages of your diagnosis, what you expect, you get.

And so if you're expecting to decline rapidly, because that's what someone told you, you're going to look for symptoms that you are, and it'll be self-fulfilling prophecy. So what I want to do is come in and say, "Listen, if you empower yourself, "tomorrow can be better than today." And I've seen that over and over, And a lot of my PT colleagues will tell you that as well. People at five years diagnosis may possibly move better and feel better than they did at diagnosis because they're caring for themselves better five years into a Parkinson's diagnosis than they ever did in their entire life.

So, I would love for you to read that blog post that I wrote. Lauren is going to put it in the comment section below. And I just want to reframe your beliefs around a Parkinson's diagnosis, that we can reset and layer on some positives, instead of some dark gloomy gloominess. Because fear can be really more of a limiting factor than a lot of the symptoms themselves. Okay, so the next thing about empowering yourself is building a team, a healthcare team and a support system. So, I'm going to list off some of the people that I always recommend that you have on your Parkinson's core team, your healthcare, okay. So you're going to want a movement disorder specialist, which is a neurologist that specialized in movement disorders in Parkinson's.

Parkinson's is a movement disorder. So you're going to find a movement disorder specialist, hopefully in your area. The next person on your team should always be a Parkinson's trained physical therapist.

Then you, I always encourage people to have a psychologist or even a neuropsychologist on board, because getting a Parkinson's diagnosis can be really traumatic, and there are a lot of emotions that pop up, and I know we don't like to talk about emotions, and feelings, and we think that they can just be discarded. But the way that you feel and the emotions you have, and the thoughts you have around your diagnosis contribute to your symptoms and your overall health. So I always recommend having a psychologist on board, even if it's for one session or two, just to talk about your diagnosis is really, really, really valuable. Then the fourth person I always recommend to have on your core team is a nutritionist. Like I said, your gut health and your brain health are directly connected. Your gut is your second brain. And so you want to have a nutritionist on board that is really familiar with neurological diagnosis so that they can help you prescribe some nutrient-dense eating programs to help you really heal and fuel your body with good powerful things.

Okay, so that's the main core of your Parkinson's team. Then we're going to kind of spread out to the fringe of people that may be bringing in here and there, because there are a lot of facets that can go into a Parkinson's diagnosis. So the first person I'd recommend potentially having on your fringe team would be a urologist, then we have a social... So a urologist has to do with urine, has to do with your kidney, your bladder, your urethra, everything to do with going to the bathroom.

Then you're going to have a social worker, potentially helping you find resources for you and your family that you may not know about, that can help you in a lot of different areas. A speech therapist if you're having trouble with cognition, or swallowing, or drooling, facial expression, voice projection, those are good things to call in a speech therapist for. And I always recommend checking with one of those at initial diagnosis, and then once a year at least if you're having some, some speech issues.

Then also seeking out a sleep specialist, a majority of people who've been diagnosed with Parkinson's have issues with sleep. The major population has issues with sleep. So, seeing a sleep specialist to see how you can optimize your sleep. Bringing in a sexologist. I just saw Claire pop in, who's a colleague of mine, a PT in California. Her and I have had many discussions about the important of talking about issues with your reproductive system.

Sex is really important as a part of a human function. And so bringing a sexologist in to help you and your partner figure out how to make that relationship work with this new diagnosis, and symptoms, and feelings, and all kinds of crazy things going on can be really, really helpful. So don't let that tabooness scare you away, okay? Then this is a personal preference of mine. I always recommend, if you have the ability and the resources in your area, part of your fringe team could be going to see a functional medicine practitioner, at least once, if not maybe a few times a year or more. And the functional medicine practitioner is trained in traditional medicine, but they have a specialty in functional medicine which helps you identify the origin of different symptoms, instead of simply prescribing medication to mask a symptom, so if that makes sense.

So, say you're having headaches and joint pain. Instead of prescribing you Excedrin and Aleve for those two different symptoms, they're going to look at you and say, "Let's identify why your head hurts "and your shoulder hurts." You may have, for example, gluten sensitivity, or you may be lactose intolerant if your having dairy issues, digestive issues and congestion. So anyway, a functional medicine practitioner can be a great person to have on the fringe of your team to help you identify really where a lot of your symptoms are originating from, instead of covering them up with more medication. If you've been following me for a while, you know how much I love functional medicine.

Okay, so that's buildings your team. And as you're building, as you're empowering yourself around your diagnosis, you really want to build a support system. So every one needs a tribe.

I'm grateful that you're part of mine. You're tuning in. You're welcome in our tribe. It's a virtual tribe obviously, and so it's always great to connect with people one on one. So if you can find a support group or even just two or three people that you can meet with once a week to really get things off your chest, to share your life, if you know that there are people around you that you can count on no matter what, your health is so much better and your outcomes are so much better. So a support system, look for at the local non-profit level.

There are plenty of support groups or just exercise groups that you meet with once a week. It doesn't have to be sitting in a circle, sharing your feelings if you're not comfortable with that. But if you don't have anything nearby, I would love to invite you to be part of our community.

The Invigorate Community is a private Facebook group that we have just for people who've been diagnosed with Parkinson's. And you can find that by searching the Facebook groups for the Invigorated Community, or Lauren will put a link down below. But we'd love to have you inside. We have such a supportive group, a lot of compassionate, enthusiastic wonderful people inside of our community, including myself and my wonderful community manager, Lauren.

So hop in there, say hello. Let us know who you are, and we'll welcome you to our tribe without any strings attached ever. Okay. So now, let's talk a little bit about caregivers. If you're in here watching, and you're a caregiver, just give me a heart because you guys are wonderful, and I love, I love how dedicated you are to your care partner, to your partner who's been diagnosed with Parkinson's.

Some people are care partner and have been diagnosed with Parkinson's. So, as a care partner, you're a part of this too. You're the other half of this relationship, or if you are a sibling or a child, that's the word I'm looking for, child, you are part of this relationship, and you are part of this too, and you definitely have needs. And finding that balance of give and take between the two of you take a lot of communication. As you know, I'm probably preaching to the choir. But I want to give you just a little bit of encouragement to do the same for yourself as far as educate yourself and empower yourself. It just may look a little bit different.

So, first of all, just make sure that you are... I'm not going to say make sure, but here is the feedback that I get. If you're listening compassionately, this goes both directions too. But listen compassionately, speak compassionately, right? So we speak and we listen on both ends of this relationship. So when you're working your loved one who's been diagnosed with Parkinson's, speaking compassionately and listening compassionately, and making sure that they're also doing the same thing. Ask for help, build a tribe. You need the people around you as much as the person that you care for does.

You need people who are outside of that to go out and express yourself individually to go still be your own independent human being. And maintain your interesting, maintain your passion, so that you can bring those things back and share them with the person that you love. And that could even break up some of the isolation that you guys may be feelings. So I really want to encourage you to be vocal, be compassionate, maintain your independence, and that goes for you too. If you've been diagnosed with Parkinson's, it's okay to go do things without your care partner, and go have hobbies and bring them back together, guys. You're two different people in this relationship. I'm not a relationship therapist, but as a care partner, and a person diagnosed with Parkinson's, you all have to form that plan together.

And that's one of my favorite times, when I see clients, is to sit down at the initial evaluation and say, "What are your expectations? "How about your expectations? "What are your goals for therapy? "What are your goals? "What are we bringing together?" Because often times those conversations haven't happened, and you may need a mediator to do that with, to talk about expectations, and feelings, and needs. But if those lines of communication should be wide open, and they should also be super, super compassionate, because you guys are each other's best friend, and support system, so it goes both ways. And I just want to tell you all that as a care partner, I kudos and I appreciate you for tuning in, and I feel like you guys know about being care partners a lot better than I can give advice for. So, just give yourself permission to care for yourself as well. Because if you're not taking care of yourself, you can't take care of anybody else, right? Right. Okay. So, to summarize all in all, no one has a crystal ball.

And if someone's put a fearful image into your head about what to expect when it comes to a diagnosis of Parkinson's, I invite you, I encourage you to dump that thought, and start replacing it with empowering ones. You get what you expect. And so, if you're educating yourself and you're empowering yourself, tomorrow can be a better day than today is. Just do that consistently over and over, reach out to your support system, and just know that there are many, many, many things that you can be doing every single day to help you improve your vitality, your independence, and your mobility for the long run. So, take those small steps, gain momentum. And if you haven't downloaded the free ebook that I created, which puts you on my newsletter list, those ones a week emails just walking you through movement, and gut health, and nutrition, and sleep, and mindset, and all those wonderful things, you can go to invigoratept.com/ebook, and download a free copy. The link should be either above or below this video as well. So if you found this helpful, I would appreciate if you shared it with someone you know.

And I would also love to hear from you guys. So if you have a moment and you feel comfortable, go ahead and just share your experience as far as maybe your diagnosis, or maybe a mindset that's been put into your head for you that you didn't even realize you were carrying around. Do you notice that you have a fearful mindset around the progression of Parkinson's? Is there something that you can do to replace that mindset with something a little bit more empowering? Or is there something that you can do today to help you feel less fearful about the future? How can you educate yourself even in little ways? How can you form a plan to make you feel a little bit more settled about how things will go? And none of us have a crystal ball, none of us can fully control what the future holds, but you have a lot more power than people may have been telling you. So I want to encourage you to use that. And like I said, if you just share your experience in the comment section below, I'd love to hear from you, And that's it from today.

I'm just going to go ahead and sign off. Let's see. It looks like we had Gerry Lind checking in from Michigan. It's so good to see you. We have rogers, says hello, and Karen.

Beautiful. Okay, guys, so I am going to go ahead and sign off here, but until next time. Obviously keep moving, and I'm sending you lots of big hugs. Okay. Bye.

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