Parkinson’s Disease webinar hosted by Griswold Home Care highlights the signs and symptoms of PD. Watch our recorded presentation and slideshow.The broadcast is now starting. All attendees are in listen-only mode. Good afternoon, everybody. Welcome to our webinar titled “Uncovering the Hidden Symptoms of Parkinson’s Disease.” this is our second national webinar as part of Griswold Home Care Solution Series. Actually, this is our first international webinar. We actually have a couple attendees today that are international, including some attendees from South Africa.
So welcome and thank you for making this part of our first international webinar today. Griswold Solution Series Webinar is a monthly webinar that connects practical tools with educational, timely topics. In the room today we have Chris Kelly, director of learning and development with Griswold Home Care; Kelly Howard, national event manager with Griswold Home Care; and myself, VP of marketing for Griswold Home Care. We’re very excited because April is all about celebrating National Parkinson’s Disease Awareness Month. If you’re at your computer or someplace today and you Googled Parkinson’s disease, you would see a lot of really great activity going on this month. You will see results like the Parkinson’s Outcome Project, Parkinson’s Moving Day, Aware and Care Program, and even some university students at the University of Texas just completed a Pancakes for Parkinson’s drive to raise money. So a lot of great activity going on around the country during this month of April.
A lot of great national organizations are helping celebrate and bring awareness to this disease, raise money for research, and help eradicate this disease. Those organizations are the National Parkinson’s Foundation, the Michael J. Fox foundation, and the Parkinson’s Disease Foundation, as well as many, many other national and local companies really helping to get behind this cause in April. Joyce Oberdorf, National Parkinson’s Foundation president and CEO, just had a really great quote that I think sets the table for this solution series webinar. She said, “Every person with Parkinson’s should know that they can help fight the impact of the disease. It is never too late to see improvements in one’s daily life. This campaign brings to life the many ways that anyone can take action and armed them with the resources they need to live their best life with Parkinson’s.” And that’s what the solution series webinar is all about is bringing practical tools to help anyone who might be on the webinar deal with the hidden symptoms of Parkinson’s disease. I want to thank you on the webinar. You are very much part of the solution series webinar.
And part of the webinar series involves bringing a variety of backgrounds on to this call. Health care providers, you may be a discharge planner, or a social worker, or an administrator that works with clients every day that have Parkinson’s. You may be a professional caregiver who is currently helping someone in the home and really from an organization, from Griswold Home Care, we thank you for your dedication. We see the great work you do with clients every day. Family caregivers, you’re supporting someone you love who has this disease in a very selfless way. We thank you and thank you for being here today. And those are living with Parkinson’s disease, this webinar is very much intended for you, as well, to help connect you with very practical tools on a topic that we think is very timely. Our goal for today is to put the focus on the hidden symptoms of Parkinson’s disease.
There’s certainly a lot of talk about the physical symptoms, which we’re very aware of, but we want to address the hidden symptoms and then provide each one of you on the call today with practical tools to help understand and overcome those hidden symptoms of Parkinson’s disease. So I want to introduce you to today’s speaker, Chris Kelly, who’s the director of learning and development at Griswold Home Care. Chris just has a great background for this topic. And with that, I’ll turn it over to Chris Kelly. Chris, welcome to the webinar. Great. Thanks, Derrick. Good afternoon, everyone. It’s hard to really describe how excited I am share the next hour with you. Some great tools, great information that we hope is helpful for everyone. As Eric mentioned, part of my current role, I worked for about 25 years in the advocacy space, in long-term care facilities, nursing homes, assisted living, primarily as a recreation therapist and dementia unit manager, and had the privilege of working with clients and family caregivers living with Parkinson’s every day. My message to you is that I’ve always admired your courage and your perseverance.
Very, very challenging condition, which we’ll talk through. Derrick mentioned, we also have health care providers. Again, admire the great work you’re doing, your dedication supporting those people with a very difficult condition. And then finally, we want to recognize our franchisees and owners that are doing such a great job out in the field supporting clients with Parkinson’s disease and other conditions. So let’s get started. As Derrick mentioned, our topic is the hidden symptoms of Parkinson’s disease, but we always like to start off with just one slide that captures a basic overview. So a common question, what is Parkinson’s disease? Parkinson’s belong to a group of conditions that are often called motor system disorders. You may also hear the term neuromuscular disorder or neurological disorder. The basic takeaway is that there are changes in the brain that impact movement. I’m a health educator, so I try to keep things as simple as possible. Also on that note, when you look to the right, you’ll see a graphic that is actually a really common graphic, not just with Parkinson’s disease, but what’s really any condition where there is a neurological change in the brain. What this is trying to show here is that there’s a chemical in the brain called dopamine, which is a messenger.
And for a person that is healthy, that does not have Parkinson’s disease, you can see on the left side of the graphic there is a good amount of neurotransmission, which means the messages are crossing from one neuron to the next. On the right-hand side of the graphic, you see what happens in the brain for someone with Parkinson’s where the belief is that there is less communication of dopamine between neurons. So one of my pet peeves when these graphics are used is that it’s not relatable. If you’re a person with Parkinson’s or a family caregiver, I’d be wondering what are these things? Where are they? They sort of float on the page. So one of the things that we love to do is actually look for analogies or metaphors that people can understand or relate to. So we wanted to share one that we thought was great. Dr. James Surmeier, chair department of physiology at Northwestern University, likens this process to the braking system on a car. So I’ll read through this with you. “Dopamine helps you adjust the pressure on the brake and gas pedals. It helps you learn when you see a red light at an intersection, you brake. And when the green light comes on, you take your foot off the brake and depress the gas pedal to go. People with Parkinson’s disease have lost the neurons that release dopamine, so they have their foot perpetually stuck on the brake. It becomes very difficult to control movement.” So the reason I like to put these two together is when you look at the graphic combined with the analogy, it makes it much easier to relate to and understand why these symptoms happen with Parkinson’s disease. What we’d like to do now is talk about the approach we took in developing this webinar and future webinars.
We have a theme that we call Solution Theories and a methodology we call SolutionsMinding. The word solutions gets to the idea that historically the information wasn’t out there for people, information about their condition and strategies that can help from a solution standpoint. We want to make sure that we bring the tools to you so that you don’t have to read through pages and pages of website. From the standpoint of mining, we also wanted to make sure that we were looking through all the different literature review and things online and tools to find the topics and the barriers that are very current. And also things that haven’t been discussed, so new issues that are relevant for every one. So what I’d like to do now is go through those four layers. Our first layer was to go through literature review. We reviewed eight peer-reviewed journal articles. What’s great about these articles is that they’re very reliable because of the rigor that goes into research. And from those eight articles, we gleaned a sample size of 8,000 people, so 8,000 clients and family caregivers. We took that finding of hidden symptoms, which surfaced through all these articles, and we wanted to test that by looking through social media. So we identified 500 different discussion boards and read through the postings from clients and family caregivers. And, again, this term hidden kept surfacing. And the great thing about social media is that it’s really raw, unfiltered data that we can go through. It’s basically clients and caregivers talking to each other. So we were excited about this theme, but wanted to further validate it by reaching out to one of the leading advocacy organizations in the country, the National Parkinson’s Foundation, to confirm that the topic was relevant and to make sure that we were on the right track with our webinar. The final layer really is today. And this is the part that’s really exciting, that most webinars are really one-way education, where a speaker like myself just basically provides information and then you have a five-minute Q and A at the end.
We actually want to make sure that we have an opportunity to learn from you. So we have a great new exercise that we call brain writing. And this is where we will go through the webinar, they’re will be certain places in the webinar where we’ll ask you to actually go into your chat bar. So we’re showing a graphic on the right and giving you an example of how you would actually enter your comments. So we would ask a question or give you a prompt, you would go into the chat function and, basically, don’t agonize or over-think. We just want to hear your thoughts, your stories, things that work for you, if it’s something that resonates with you, we would like to hear that. And then that way not only the presenters, but we can all learn from you. Right, so it’s a really neat exercise. So if you’re a health care provider and you’ve worked with a client who has had Parkinson’s, as we go through the presentation, please share that information. Type it into the panel. If you’re a family caregiver and you’ve helped take a family caregiver through maybe the early signs of Parkinson’s disease and you want to share a little bit of that story, please feel free to type that into the chat bar.
We’ll keep your name anonymous, as well, but that’s really going to help contribute to the webinar series. And one of the other benefits is once we’re done the webinar, we actually can pull all of your comments off as you’ve entered them, and we can actually communicate that back out to you following the webinar. So let’s dive into some of our findings. As I mentioned, our first layer of the process was to look through literature review. There was one quote that we’ve captured here that really jumped off the page for me. From the largest study of people living with Parkinson’s today called the Parkinson’s Outcomes Project. And this was funded and led by the National Parkinson’s Foundation. It actually included findings from 6,000 men and women with an age range from 25 to 95. So one of the largest studies to date. And the finding was that scientists showed that the impact of depression on health status is almost twice that of the motor impairments usually associated with Parkinson’s. Now I mentioned having worked with Parkinson’s and seeing how difficult the motor symptoms are, this really, really struck me and sort of stop me in my tracks. It’s sort of a breadcrumb to follow and eventually led us to this topic of hidden symptoms. The second component of our literature review was really when we look at depression and see that it’s so prominent, why is a prominent? Why is it that people with Parkinson’s have depression? Some of it is intuitive. Obviously it’s a difficult condition. But having worked in a number of different conditions, the words that kept jumping off the page to me when I read through the symptoms and when I read through the articles, were two words– “loss of.” So people actually use those words. Loss of mobility, loss of independence, loss of roles, or at least the change in roles, loss of balance, and that could be both the balance in life and obviously from a mobility standpoint loss of balance, and then loss or changes in facial expression.
So when I read those words, it reminded me of a great pioneer in the field of grieving and loss. Her name is Dr. Elizabeth Kubler-Ross. Sadly she’s no longer with us, but her work was all released in 1969 and it still lives today. And what she did is she took the grieving process and the process of loss and she developed what are called the stages of grief. One of the reasons why you never see the stages of grief mentioned in many disease states is that people typically liken it to death and dying. It’s a model that is used very often for people that are going through hospice or going through the death and dying process. However, she does note in her literature that people can also experience stages of grief when they’ve had loss of mobility and disability due to a health condition. So we thought there was something to this and wanted to definitely share this with you as part of the webinar. So I’m going to walk through each of the stages. It would be great, as we’re going through this, if you go to your chat function as you hear, think about if you’re living with Parkinson’s disease or you’re a family caregiver, sort of where do you see yourself as we’re going through each of the phases? So the first one is denial. So imagine, or you don’t have to imagine, some of you, when you’re first diagnosed with Parkinson’s disease.
There’s an initial shock that takes over. People often describe that they heard, they were diagnosed, and didn’t hear anything after that. So your mind is almost like a self-defense technique to keep you from feeling the emotion of the diagnosis. So there’s an avoidance of the diagnosis, confusion about how could this be, there’s a shock, there’s a fear. Many times people will say they’re going to get a second opinion, which in many cases good thing, but there’s an initial denial that this diagnosis is real and that it’s really happening. The second phase is anger. And again, all these phases make sense. The idea that once you’ve accept the fact that you have this condition and you’ve read about the symptoms and you’ve heard about it, there’s obviously a frustration, an irritation. And that irritation could be internal or it could be a towards other people like family members, people that you’re working with. And then along with the anger comes anxiety. And a lot of that is just uncertainty about the future. The third stage is depression. And again, just to call out, this was one of the most common findings in the Parkinson’s Outcome Project in that the depression was even more impactful than some of the motor symptoms. So some of the emotions around that are feeling overwhelmed, a sense of helplessness, particularly when you hear that treatments, in many cases, can reduce symptoms, but right now, today, there’s not a cure. Hostility.
And then just the feeling like if you don’t look, it’ll go away. Sort of a flight response. The fourth phase Dr. Ross called bargaining, where you may still be depressed, but now you’re really struggling to find meaning. Why is this happening to me, from a philosophical standpoint. At that point, you may start to reach out to others. This may be when we see people reaching out to discussion boards or trying to reach out to support groups. There’s often a desire to tell one’s story. As we went through the social media to different blogs and discussion boards, it was amazing the number of people that just pages and pages where they started from the very beginning and just felt this need to get their story out, which is the great part of social media. And then finally, there’s the acceptance phase. You basically are starting to realize, I have this condition, I was angry, I was depressed. Now I’m starting to find my way. I have my feet under me. One of the key words for this webinar, I hope everybody takes away this idea of adjustment, that Parkinson’s is a chronic, degenerative disease, but that there are ways that you can move on by adjusting your life and by adjusting the things that are going on around you. At the bottom of the stages of grief, you see that there are three distinct approaches that can help.
The first one being information and communication when you’re in the denial and anger phase. When you’re going through the depression phase, it makes sense that you would be more emotional support. And then when you’re in the bargaining and acceptance phase, you’re more looking for OK, I get it. I have it, I understand it, now what do I do? And that’s where the solution series is so impactful. And on the area of adjustment, we wanted to pull up a tool that we found that is terrific on the Parkinson’s website. And it’s basically taking Dr. Kubler-Ross’ adjustment phase and breaking it down into different steps that people can take. The denial, belief, and shock. Take time to explore your feelings. Be honest with yourself and others. I also like this tool because there are interactive check boxes where it literally could be an action plan that people could work through each thing and actually check things off when they get done. So once we saw this tool, that again really helped to validate that these stages of grief are not just relevant for death and dying, but they’re also relevant for people that are living with Parkinson’s disease. We wanted to talk now about the idea of psychosocial assessment. So for health care providers that are on the webinar, social workers, clinicians, nurses, we weeded through health education assessment models, nursing assessment models, social services assessment models, and there were five common themes that we came away with that you want to think about when you’re supporting someone with Parkinson’s disease. And for those who are out there with Parkinson’s and family caregivers, these are things that you want to think about when you’re going into your office visit and things you want to talk about and share.
So starting from the top, towards the right, the first influencer is what are your values, emotions, beliefs, and attitudes about your condition? And some things that fall under that. What is your level of anxiety? What is your level of depression? Talk about your uncertainty, just the fear of what’s coming in the future. Are you feeling angry? And what is driving that anger? And then are all these things combining to cause isolation? Very commonly, when people are diagnosed or they start to progress, they stop spending time with friends, stop going out, and it’s a reality, especially with Parkinson’s, where there are challenges with driving and movement. Moving down, we see knowledge. So from a knowledge standpoint, we want to make sure, how much do you understand about your condition? What questions do you have specifically about Parkinson’s, what causes it, what the symptoms are, what the treatments are? And then most importantly to this model, do you have the tools and the information so that you can self-manage? And when we say self-manage, we don’t mean that you’re working on this alone, but between your office visits, and when you’re not with your care team, do you have the tools to do the things that you need to do in between visits to maximize your quality of life? Below that, confidence.
Very, very important that you want to believe in your diagnosis, you want to believe that your care team, in particular your prescriber, have prescribed the right treatment and are supporting you through the process. Believing in your treatment, and also believing in your ability to manage treatment. Obviously, treatments help, but they also come with side effects, so it’s important for people to believe that the treatment they’ve tried that the benefits outweigh the risks. The next layer is support network. Your awareness of your support network, your access to family that could support you, friends, peers, advocacy. And then finally, surrounding environment. Obviously Parkinson’s itself is enough of a challenge, but life happens. So there are financial issues, competing needs, there could be a childcare issue if you’re younger person with Parkinson’s disease, and then also making sure that you have access to the care and services that can help you specifically related to Parkinson’s. So, Chris, if you’re a family caregiver or health care provider taking a look at this model, how can someone who’s working directly with someone with Parkinson’s really take a look at this model to assist someone who might be living with Parkinson’s? Yeah, great question, Derrick.
What we’ve tried to do here is take a number of different models and actually more show themes and influencers. When we get to the tool section, there are actual specific Parkinson’s disease quality of life assessment tools that had been developed, proven, and validated. A number of tools that you can use. But the great thing about this is if you’re not someone who has the time to go through all the clinical tools, it’s basically when you meet with someone and you know you have the 15 or 20 minutes, aside from talking about the visible symptoms, the tremors and the things that you see, this model can give you sort of a snapshot, quick guide and so forth. So for the clients and family caregivers, these are the things to talk about. For health care providers, these are things to ask about. OK. So the next finding from our literature review, which really is the primary theme around this idea of hidden symptoms, is that there’s a disconnect. And this is actually very common, even beyond Parkinson’s, particularly in the neuroscience space where you have prescribers who have limited time who in many cases have prescribed treatments that primarily impact motor symptoms or what we’ll call physical symptoms. Some examples, and this is on your left, some examples of motor symptoms are resting tremor, slowed movement, meaning that in your mind you want to move at a certain speed, but your body’s not following, which could be very frustrating. Rigidity.
So you just don’t feel, you feel very stiff in your movement. Unstable posture. So leaning forward, which in many cases can impact balance and falls. Some of the secondary motor symptoms, freezing gate where you’re standing with both feet on the ground and you want to take a step, but your feet are just basically, they almost feel frozen, which is where that term came from. Difficulty with handwriting, mask-like expression where you don’t have an expression on your face that actually mirrors how you feel internally. Unwanted acceleration of movement. So this is, from all the different symptoms that I’ve seen in person, this one feels like the most challenging where without any warning, people with Parkinson’s disease can basically start moving. Their feet start moving and they start to move forward without wanting to. And there’s a lot of unpredictability with that, which is very scary, it creates a lot of fear and uncertainty. So obviously as I read through these symptoms, the fact that we’re focusing on hidden symptoms is by no means minimizing how impactful these physical symptoms are. What we’re trying to say is these are things that are seen and discussed and, in many cases, this is the focus of the office visit. However, on the right-hand side, all of the studies, including the outcomes project, said when we talk to clients and caregivers, they have another focus. They’re focusing on, and this word hidden came up all over the map, they’re focusing on depression, anxiety, isolation, insomnia, needing to use the bathroom frequently, fatigue, loss of energy. A percentage of people with Parkinson’s develop memory challenges and maybe even dementia. Excessive saliva, vision, dental problems. So these are top of mind for clients.
So when they have their office visit with their prescriber, what we’re hearing through our research is that there is not enough time spent talking about the hidden symptoms. And again, there’s no blame here. We’re not saying that it’s the prescriber’s fault or the client’s fault. We’re just acknowledging that something needs to change. And obviously all of these symptoms together impact work, financial issues, roles, family, hobbies, and relationships. So one solution, in the spirit of solutions, is that we don’t need to just limit care teams to the client and then the prescriber. There are tremendous health care providers out there. Many of you are actually on this webinar who are actually in the front lines. There’s a great, great term that we want to introduce here, if you haven’t heard it before, that the Center for Disease Control has started to use. And the term is health care extenders. The idea here is that there are professionals out there that are non-MDs, so they’re not physicians, however they’re on the front line and their specific training is actually in the area psychosocial issues. So the hidden symptoms that we’re talking about, this is their focus. They do have the time and they do have the skills to help manage it. So what we’re showing here is sort of an aerial view of what they care team and what the services should be for a person with Parkinson’s and also for families. And the reason we put the National Parkinson’s Foundation first is that they have a 1 800 number. So I’ll say the number, 1-800-4PD.INFO. And we’ve also given you the numeric number here, as well.
The idea here is to save you the trouble of having to search through online. You can call the 800 number, share your information, and it’s almost like a triage point where they can direct you to the providers and the information in your area that is relevant to your situation. And I just want to go through a couple of these very quickly, and I want to mention these are not soft recommendations. Everything that’s listed here in the literature was proven to be a benefit for people living with Parkinson’s. So physical therapy, speech makes absolute sense from a movement standpoint and flexibility. Occupational therapy, especially for younger people. You’ve heard that there were people 25 years and over in the Parkinson’s Outcomes Project. So if you’re younger and working, Parkinson’s can create challenges in work, so you would want to see an occupational therapist. Massage therapy can actually drive oxygen and blood flow to the parts of the body that are rigid and stiff. Discharge planners. Many people with Parkinson’s are in the hospital. They need to go from the hospital to home. Home care and discharge planners can play a great role in making sure there’s a smooth and safe transition. Social workers know all the resources in a specific area and can guide people where they need to go. Specific call-out for yoga, Tai Chi, Pilates. Those three modalities have been proven to have a significant impact on flexibility, mobility, and balance for people with Parkinson’s, and will talk a little bit about that later. And then we also want to mention government agencies, the area Agency on Aging, and you also have other local Parkinson’s organizations. If someone can’t afford these services for can’t find these services, you have, again, another triage point where you get the information that you need. Obviously nurses, health coaches, pharmacists. So what we’re trying to show here is that we want to expand the team and extend the team to include these health care extenders. So we want to shift now and talk through some really moving quotes. These are real stories and quotes that we received from people with Parkinson’s and caregivers on discussion boards. This was the first one that really, really again stopped me in my tracks and I’ll read it. “If you happen to come across some with Parkinson’s, you’re likely to notice the tremor and shuffling, unsteady walk. The symptoms you won’t see are the feelings of restricted movement, the frustrating disobedience the body has for sufferers’ conscious will, and the subsequent feeling that you are a puppet whose strings are controlled by Parkinson’s.
You’ll miss the sheer mind-numbing exhaustion, the feelings of helplessness and depression, the irresistible need to urinate every five minutes, the food that gets stuck in your throat because swallowing is affected, the irresistible sleepiness and the battle not close yourself down in the face of all this.” So this is obviously a very emotional quote. It covers the frustration, but primarily, when you read through all these symptoms that are described, they’re all hidden. These are all things that are very difficult to bring up in an office visit because it takes more than the time allotted to talk through them and to process them. So this was found, and we’ve given you the link here, this was found on the National Parkinson’s Foundation open forum. The next thing that we did is we started to analyze the subjects that clients and family caregivers used when they were coasting on discussion boards. And the reason we did that is if you think about it, when you send an email or post on a discussion board, when you write the subject, you really have to stop and think about how to say the most important point in the fewest words. So I’ll read through some, and these are basically common themes that surface. Starting from the top right, “Adapting to life with Parkinson’s.” So this was basically a person who was diagnosed, started to have more symptoms, and they basically said that it was impacting every aspect of their lives and they were asking other people so how did you adapt? How did you adapt at work? How did you adapt in terms of how you’ve modified your home? Towards the bottom right, “Am I disabled now?” So this was a person that was not able to work because of their condition, were interested in finding out what types of disability support that they could get, but didn’t really didn’t understand if they qualified for disability or not. So they were asking other clients to give them information about that. The next one, bottom left, that I’ve seen first-hand and can’t imagine is “Afraid I will choke.” So, obviously, we need to eat, nutrition is a big part of our health. With Parkinson’s, when you have difficulty swallowing, it’s very difficult, when you’re having that symptom, not to think about it.
And every time you drink, every time you eat, there are a number of people just talking about number one the fear, and then also asking how are other people dealing with not only the fear, but also just things they can do to improve their swallowing function. And then on the top left, again, this was a younger adult that said “Parkinson’s and dating.” And was asking a lot about when you meet someone, do you tell them you have Parkinson’s? If you have told them you had Parkinson’s, what was their reaction? Just a lot of posting around relationships. Great. You know, a lot of the topics seem to not be the clinical topics, really kind of pointing to the topic of those invisible symptoms. For anyone that’s on the line today, if you share or have shared your stories on other social media sites, if you’re involved in any discussion boards that are out there on Parkinson’s, feel free to enter those into the chat panel, and we’ll be sure to share those with the rest of the audience after the webinar, as well. Awesome. Thanks Derrick. So now let’s look at some of the subjects that family caregivers posted. Obviously this condition impacts, obviously, the person with Parkinson’s, but has a tremendous impact on spouses, it could be a grandparent, it could be a child, family member, or friend. So we have some quotes that, again, capture some of the common themes. Starting from the top right, “Driving problems. What to do?” So in this case, this is a family caregiver that, in their mind, they notice that their spouse was not driving as well as they used to, weren’t sure they were aware of it, didn’t know how to bring it up, worried that if they brought it up it would be an argument. A lot of posts around people that acknowledged that they had driving problems and wondering if there was anything that could be done about it. So driving was a huge topic. “Dealing with depression and anger.”
Again, two primary hidden symptoms that were part of the outcomes project findings were depression and anger. So people were looking for validation or other people dealing with this, and then also looking for tips and strategies for overcoming them. Loneliness. I mentioned the difficulty with travel, especially once got Parkinson’s progressed. People feeling isolated and wondering how they could connect with other people when they weren’t able to leave the home as much as they would like. And then on the top left, this was a spouse that started to notice memory changes in their husband and wondered is this normal aging? Is this a part of Parkinson’s? If it is, how could a person get tested? What does this mean? Is the memory going to get worse? Just a lot of uncertainty and anxiety about that memory loss. So the next two slides I’m going to go over, I have to be honest, of all the information that we’re sharing, this really blew me away. The perseverance, courage, amazing courage that people with Parkinson’s exhibit, to me it’s very moving. We talked a little bit earlier around the stage of grief around adjustment. I just want to call out that we each cope differently. And that that’s the case with Parkinson’s disease. And in this case we see someone who obviously was going through a really challenging time with symptoms, but decided to cope through humor. And again, just a caveat that we’re by no means minimizing how serious this condition is, but also want to call out that there are people out there that are responding and coping and moving on to just through humor, and in this case some sarcasm. So I’ll read through this. The topic of the blog, and again this was on the Parkinson’s Foundation site, was “My pet peeves.”
So starting from the left. “Buttons. Why don’t they make Velcro shirts?” Speaking to just the challenge with the fine dexterity that it takes to button your shirt. And just think as I’m going through these, these are simple things that if you don’t have Parkinson’s that you do every day without thinking. Drinking coffee, buttoning a shirt. “A toothbrush, hard to use, however the alternative is not pretty.” On the bottom right, “Stress. I shake uncontrollably when under stress. A great tool when I want to win an argument with my spouse.” And then on the next slide, “Sleep, can I can never find the perfect position. I’m thinking of trying hammocks. Will let you know how it works out.” And then the bottom right, I think it’s telling given all the things that are described here, that this person says it’s their biggest frustration, “writing, I avoid it like the plague. I love the look I get from immigration officers when they read my customs forms. I just say sorry, rough flight. There was a lot of turbulence.” So I won’t read through all of these, but what would be great is, again, you have your chat function, if there are any statements here that resonate with you, that you like, repeat them in the chat function. Or if there are any other analogies, any other similar pieces of humor or tidbits that would help others to process and respond to some of these symptoms, you could also type them in. So the fourth phase in our social mining process was, as I mentioned, to reach out to advocacy. In this case I had great, great discussion with the National Parkinson’s Foundation. And I can say from the standpoint of being a health educator and a professional caregiver, their website and their tools and their spirit are just phenomenal.
They have a campaign today that’s called “Whatever it Takes to Beat Parkinson’s.” And when we talked about this idea of hidden symptoms, we heard that the topic was really relevant, but we also heard that let’s not stay there, let’s not stay in the depression and anxiety. Let’s talk about it, acknowledge it, but let’s move onto the fight. Let’s move on to the solutions and the tools and things that they can do to manage their condition and some of these challenges, which we thought was great advice and we tried to capture that in this webinar. So what we’ll do now is we’re going to transition from, what we’ve just done, really talk through our findings, through the literature review, through social media, through, again, a great collaboration with the National Parkinson’s Foundation, and actually dig down and show you some of the tools that we think could be helpful not only for clients and family caregivers, but some of these are also really helpful for health care providers, health care extenders that are working in the field. So starting on the left, the National Parkinson’s Foundation has a great page that is solely dedicated to depression. So when you go on to this page, there are some great tools. There’s an overview of depression. There is some information highlighting outcomes from the Parkinson’s outcomes project, which we just talked about. There’s a recommendation to get screened at least once a year, to talk about mood changes, which again is the spirit of this webinar. And then what I really like is there is an online research survey so that, again, in the spirit of making sure that you’re not only supporting yourself, but that your feedback and your survey can help others. This is a great, great web page. And then down at the bottom is an article related to how depression impacts quality of life. We also have, in the center of the slide, and I’ll go through a couple of these and then we’ll dig down into the links. We have a web page related to treatment options for anxiety. We spend a lot of time talking about depression, but as you can imagine with the uncertainty and the fear that comes with Parkinson’s, there’s a significant layer anxiety. So here, which is great, there’s a brief paragraph acknowledging the different types of anxiety, and then the Parkinson’s Foundation very quickly talks about the different treatment options. So they’re giving you the names of different treatments. They talk about benzodiazepines, which are the most common medication prescribed for anxiety. So again, just a very easy to read page. When you get down towards the bottom of the page, in addition to medication, a key approach to managing anxiety is second psychotherapy, or the other terms you’ll hear often is talk therapy. There’s a therapy called cognitive behavioral therapy, or CBT, which is proven to help people understand their anxiety, to talk about it, process it, and figure out ways to overcome it.
And then again, in their learn more call-out, there is a great manual on mind, mood, and memory. We actually went through this website to figure out how many clicks it would take to get to these different tools, and on most websites, it takes about seven to eight clicks. So if you have Parkinson’s disease and you have tremors and it’s difficult for you to search on a computer, if you’re a family caregiver and you’re exhausted, it’s hard to read and find what you’re looking for. Health care providers are busy, they don’t have the time to search. Our whole focus of the solutions here it is to take these tools, which are tremendous, and to bring them to you. So the last tool is the Depression videos and webcasts. So what I love, again, about this, very quickly you can see that it’s easy on the eyes. Not a lot of reading. A lot of different topics that we talked about. The social media comments, relationships, treatments, how it affects family and social network, tips for talking with a physician, non-motor symptoms of Parkinson’s disease and depression, which is a webcast. So again, very, very easy to find it, very easy to find the information that is relevant to you. And it’s also video, so it’s another way that people learn without having to read and do a lot of searching. So the other organization we wanted to call out, and I should say the other person we want to call out, is Michael J. Fox. Obviously a well-known actor who you have to admire his courage and perseverance as he single-handedly created a lot of visibility for Parkinson’s disease. We wanted to make sure that we called out a few tools on their site. And again, they’re primarily focused on research and fund raising, which is obviously important, but they also have some great ideas and tools that we’ll go through. The first one is called “Emotions and Parkinson’s Disease.” So this is a great blog or magazine format where it’s a person talking about their anxiety, a person with Parkinson’s, so you’re hearing their real story. You see anxiety and depression acknowledged.
There’s an Ask the MD portion here where you can link out to a video, surveys, information, more information that if there’s something you want to dig deeper on related to anxiety it’s there for you. So it’s just a great web page with the ability to hear real stories from people and how they manage their challenges. In the center, in the center and on the right-hand side we have two videos, which I’m not going to go through because they’re pretty lengthy, “How Are Depression and Parkinson’s Linked?” And, really quickly, the spirit of that video is that in addition to dopamine, there’s another chemical in the brain called serotonin. And when that is low, people can develop depression. So it’s not just the blues. There are people that actually have, as part of their Parkinson’s, the changes in the brain can develop depression due to a chemical change. And then I love the title of the third video, “I Have Parkinson’s Disease, but it Doesn’t Have Me.” Which is in keeping with this spirit of fighting and persevering. So Chris, if someone gets access to these tools after the webinar, if you’re a health care provider, are these tools and links that you would recommend they send to someone who maybe is newly diagnosed or a family caregiver who might be helping a loved one who may be going through some of these emotional times? Yeah. Great question. So what we’re hoping happens here is that if you’re a client or a family caregiver, these are obviously relevant. You’re getting to hear from people like yourself. If you’re a health care provider, and again a lot of times they’re are time limitations, people don’t have the time to read or the desire to read, that if you’re a health care provider, this is something you could pull up on your iPad. Or something that, if you have a waiting room area and you have a TV, or a place where people can watch DVDs or videos, something people can watch before the visit. And then it’s also something that if someone brings up depression or brings up anxiety and you don’t have the time to talk about it, you could, as you mentioned Derrick, you could just basically quickly link them to a video, which is, I think, the way people learn the best because they see it, hear it, can relate to the people in the video. So good question. And as we’re going through these videos and all these tools, for the health care providers out there, you have your chat bar there, we would love to hear about other tools that you’re using. If you’re using these tools, we’d love to hear it and how they’re helping you.
But even more important, if there are things here that we’ve not captured, that we’ve not included, that you could share, that would be great. And then for clients and family caregivers, we would love to hear, again, your thoughts on these tools. Have used them? Are there other tools that you’ve used that have helped you? Videos, movies, anything that has helped you specifically with the hidden symptoms? And then again, at the end of the webinar, we’ll be able to go through, take all the ideas that you’ve shared, and pulse back out to everybody as a follow up publication. So the next page is we’re going to move out of that advocacy space and talk a little bit about some of them the government organizations and Dr. Ross’ foundation. I want to start with the American Academy of Neurology. They offer a practice parameter that focuses on the treatment of non-motor symptoms of Parkinson’s disease. So this is really a more clinical guide where you can go in and not only learn about the hidden symptoms of Parkinson’s, but it actually gives you guidelines for treating people. This guideline clearinghouse is a great place where you can very quickly find new guidelines. I just remember when I was back in the field, it’s very difficult to find the time to get caught up with guidelines as they come out. This guideline clearinghouse basically is the first portal that you would want to go to the about new guidelines. And what’s great is these guidelines directly relate to our topic. So it saves you the time of searching through articles, it gives you the guidelines that you need to best support the people that you’re caring for with Parkinson’s and also family caregivers. On the bottom left, we have the National Institute of Neurological Disorders and Stroke, which has a great web page. And I love the image related to that at the Tai Chi. And again, what I really want to emphasize is how often you hear about Tai Chi, you hear about diet, you hear about wellness. You hear about that so much that I think we just get numb to it. I really want to emphasize that through research, and I think that’s why it’s called out on this page, we know for a fact that Tai Chi, Pilates, and yoga, all of those, as you can see in this image, help people with Parkinson’s. They help your balance, they help your strength, they help your mobility. I think there are many people that see this as sort of off the mainstream path. I’m embarrassed to do this in front of people, which is why I really wanted to show this image of people all ages using a proven modality that you can find, again, at your local wellness center. If you’re seeing a physical therapist or occupational therapist, they can direct you to a program near you, and so could the National Parkinson’s Foundation.
So if you’re anyone on the webinar and you’ve tried Tai Chi and you know local resources or great recommendations of areas in your community where you’ve attended Tai Chi, we’d love to hear about those. Feel free to type it in the chat bar. Awesome. So then that last tool on this page that we want to talk about, I mentioned earlier Elisabeth Kubler-Ross, again, someone that has inspired me from the time I really started my career, she has passed on. It was a huge loss for the health care community, but you can actually purchase her book, The Five Stages of Grief. And dig a little bit deeper than what we’ve done here. And the thing that I loved that she said is there’s no right or wrong stage. There’s no time limit. If you’re in the anger phase, obviously you don’t want to be there, but that’s where you are. So she helps you to understand the feelings that you have and the things that you can do to move through the process. But she makes it feel normal. She makes it feel like something everybody’s going through. So this is a great website for more articles if you’re interested in that. And again, not just death and dying, but also related to chronic illnesses like Parkinson’s disease. And then this tool, again, I know I keep saying this, but just blew me away from a design standpoint. The National Parkinson’s Foundation did something extraordinary. They basically took their blue ribbon symbol and they’ve taken smaller symbols, put them together, and as you roll over each symbol, there is a treatment recommendation or something, a lot of these are related to invisible symptoms, where they’re giving you a technique. Like massage therapy, which we talked about. Click on “learn more,” and it drives you to an action plan. Just absolutely spectacular. Something that I’ve never seen done on any other advocacy website, to that point, any other website.
To take a visual graphic and not require people to read a lot of text. It’s interactive, it’s engaging. It’s something that, it’s almost like if I had Parkinson’s, or if I were a family caregiver, or even a professional caregiver, each day, go in and look at one. Click on it, learn more, and think about how you could possibly incorporate that into your care plan. Within that ribbon, there are over 100 tools available, most of which are designed to address these invisible symptoms, the non-clinical, non-physical symptoms. What a great tool. Nice find, Chris. Absolutely. And again, we really credit the Michael J. Fox Foundation, the National Parkinson’s Foundation, for amazing work. Derrick mentioned some of their programs, advocacy, public policy, education, support, all over the map. And they’ve done a great job with their website. So let’s shift and talk about some of our key take-aways and then we’ll transition to Derrick and take some questions. We always like to end with two take-aways. Obviously we hope you take away more than two things. The main points are first that quality of life for clients with Parkinson’s disease and their family caregivers is directly related to psychosocial issues or what we’re calling hidden symptoms. That these are rarely addressed. Again, nobody’s fault. We’re not blaming, but we’re calling it out and we’re giving people the tools to overcome that. And that it’s also many times not discussed with prescribers, primarily due to time constraints. I’ve also heard clients say, you know, I can’t find the words, or I’m embarrassed to bring up some of these things. We’re hoping that the tools that we’ve shared can help people to feel more comfortable and also can help prescribers and health care extenders to support clients in talking about them. And then finally, health care extenders tools and resources can uncover the hidden symptoms and provide solutions to overcome them. Again, for all the people on the line who are working within the Griswold family, home care, the area agency on aging nurses, social workers, all the people that are on that one this webinar, we recognize you here and the important work that you do and really love the idea of your role in extending the health care outside the prescriber. Great. Great tools, and I think it back to the first take-away that Chris mentioned, I think it’s a great point that the hidden symptoms are OK to talk about. If your anyone that’s dealing with a family or you’re living with Parkinson’s today, that hopefully these tools inspire you to one, know and acknowledge that it’s OK to bring these up and there is a community out there that is willing to discuss and help share tools to help you overcome the invisible symptoms. So with that, we’re going to open it up to questions and answers.
On your Go To Meeting panel, there is a orange arrow in the upper right-hand corner of your screen. If you click that button, it will expand the window out to the left and you’ll have the ability to open up the chat function at the bottom of the Go To Meeting panel. If the panel is closed, you’ll need to hit the plus button on the chat panel and that will open up and you can enter questions. And what we’re hoping is you can walk through. We already have a number of questions here, but not only questions, but if you’re someone living with Parkinson’s and you have additional tools or you’re a health care provider and you want to share any additional information with any attendees, we’d love to hear those. So we’ll take a moment while we compile the questions and answers and then we will address those. So while we’re compiling the Q and A, we do have a few comments. This comment comes from Sandra who says, “I am a care supervisor for a senior care agency and a couple of our clients have Parkinson’s disease. This webinar is speaking to me directly.” Well, Sandra, we really appreciate that. Hopefully you can pass along some of these tools to the clients and the caregivers that may be assisting them in the home. We also have a couple other questions that have come in. Let’s see, another comment from Sandra. She’s commenting that she also, so Sandra is commenting, when we review some of the social media blogs, we heard a lot of these non-clinical statements. They weren’t talking about that the medication, they were not talking about the physical symptoms, but Sandra says she’s also seen clients who say things like I’m afraid I will choke. She’s heard that directly from clients. So Sandra, great validation. Thanks for sharing that information. So we have another question from Cheryl. “Just by looking or talking with someone, how would you know if they have Parkinson’s disease?” Chris, do you want to take that? Cheryl, great question. One of the things that I would say is there are times where you don’t know. When they’re in the early stages of Parkinson’s, they may have a more mild tremor sometimes in their hand or their finger. As Parkinson’s progresses a bit more, that’s where, if you think back to some of the symptoms that we described, you might see someone that’s a more pronounced tremor in their hands. You might see people that look like they’re walking a little bit more slowly than usual. When they go to take their first step, a lot of times their foot might get caught. It looks like their foot gets caught on the carpet or the floor, they might trip.
But in many cases, you either don’t know it’s there or you might see a symptom, some of the symptoms that I’ve just described. Great. Thanks, Chris. Let’s see. We have a question from Heather. Heather asks, “Do any of the foundations or government organizations provide a list of providers for counseling, home care, et cetera? And are there lists on their websites, or does anyone have to request them?” I think this question refers to the health care extenders on that network of health care extenders. Chris, how might someone get in touch with all those health care extenders? Absolutely. So a couple slides back, we had the National Parkinson’s Foundation 800 number and I’ll give that again– 1-800-4PD-INFO. And again, the number for PD Info is 473-4636. And to be honest, that would be, Heather, that would be my first stop, because they basically keep directories of services, many times by nation, but they also give you an opportunity by zip code to search for the chapter in your area. And if you reach out to the local chapter, most local chapters keep a directory of services. The other government organization for really serving older adults that have Parkinson’s is the area Agency on Aging. So most, if not all in the US have a Department of Health, and then under the Department of Health, each county has an area Agency on Aging. And they would also keep directories services. And what’s great is they also in many cases have financial support program and respite support programs that can help to pay for some of the services. Great. Thanks, Chris. We have a comment from Rae. Rae [? Guiseburg ?] just mentions that she’s also seen the book from Kubler-Ross. So, Rae, thanks. Feel free to spread the knowledge of that book around with clients, as well. We also have a comment from Cathy. Cathy notes that in many states the Parkinson’s Association has a grant for respite home care.
Depending on the state, clients or family caregivers could check with the local Parkinson’s chapter for more information, specifically in Connecticut where Cathy is at. So, great information. We’re not completely certain if that’s for all 50 states, but in Connecticut, Cathy has mentioned that that is available and through that grant, home care services are available. So thank you for that information, Cathy. And, Cheryl, I just wanted to jump back to your question about how would you know if someone has Parkinson’s from looking at them? I was just thinking with all the videos that we’ve included in the presentation, that just simply by watching some videos, maybe testimonial videos with real people with Parkinson’s talking, in many cases, the Tai Chi video, for example, actually shows people with Parkinson’s moving. So better than words, that would give you an opportunity to actually see people with Parkinson’s and some of the symptoms that they experience. Yeah, great, great comment there, Chris. And also, in the social media mining that Chris went through, really digging into the blogs, Chris is absolutely right. There are patients who have been affected with Parkinson’s that have left very detailed statements from where they first even thought that they may have something different going on with their physical abilities, where they were not even diagnosed or had never seen a clinician for. And if you go through those stories, a lot of those are real, firsthand experiences of someone who went through it, how they recognized it, and then of course the physical symptoms that they experienced once they were diagnosed. Derrick, there’s a great question here from Linda.
“Drinking is a problem. Are small mugs with handles very useful? And only filling halfway?” A great question and great recommendation. I wanted to call out on that topic, so there’s a whole field of what we call assistive devices. So when people have tremors, when they have some of the symptoms of Parkinson’s, in many cases the sense is they are not going to be able to drink a cup of coffee or eat their soup without spilling it. And that is a real, real challenge. But there are organizations, and you could definitely get this through the National Parkinson’s Foundation, that solely focus on designing devices that can help people with Parkinson’s still maintain as much of the activities of daily living as they can and help them to adapt and adjust, but still have a drink of coffee, eat without spilling their food. There are special chairs, there are desks, there are all kinds of assistive devices that could help people to maintain their quality of life and level of activity. Great. We have a couple more questions. One from Christina who says, “If a client has a schizo-affective disorder on top of Parkinson’s, what would be some tips for caregivers in dealing with both the mood swings and anger, being that they are also magnified by both disorders of having an schizo-affective disorder and also Parkinson’s?” Chris? Great question, Christina. And very challenging. So that term we use in the field for something like this is dual diagnosis. So a person has Parkinson’s. There are some people that have Parkinson’s and have separate schizo-affective disorder or even other types of neurological disorders, and then there are other people that have Parkinson’s disease, but also have features or symptoms that are similar to schizo-affective disorder or schizophrenia, things like hallucinations. The best recommendation for caregivers is to really make sure that you get educated about both conditions.
So much like the National Parkinson’s Foundation supports people with Parkinson’s, there’s an organization called the National Association of Mental Illness, NAMI, and another great website, schizophrenia.com, where you can learn about schizophrenia and schizoaffective disorder. And both organizations could probably give you brochures and information, videos, very similar to what we’ve just done now. The other thing I would commit to doing is if you provide your contact information, we could send out more information about that. But really, get educated and the other organization to reach out to would be NAMI, the National Association of Mental Illness. Great. Thanks, Chris. We’ll take one more question or comment here. This comment comes from Elysa Washington. Hey, Elysa.
“As a licensed mental health counselor, I have worked extensively with families experiencing grief and I’m familiar with the Kubler-Ross model. I just wanted to mention that even though the model uses the term stages, people do not necessarily move through them sequentially, and often times people will experience various stages multiple times.” Yeah. Great, great point, Elysa. In fact, when you think about the depression piece and why that’s so common with the Parkinson’s outcomes project findings, if you think about it, it’s a progressive condition. So when someone first gets diagnosed, they start to go through those stages and have depression, you can start to get comfortable and accept your condition, but then when it progresses again and your systems become more severe, or let’s say it starts to impact after work or your relationships, you almost go back to the beginning. And that’s one of the challenges with a progressive condition is that it’s not as sequential and perfectly laid out as her model. People go through the stages in different orders, and also it’s important to understand, as I mentioned earlier, that there’s no right or wrong. That wherever you are, trying to understand that phase and move through it. Great. Thanks, Chris.
That will conclude our webinar. Thank you so much for your participation today. Just want to remind you that this webinar will be made available in recap on Griswold Home Care’s blog, on griswoldhomecare.com/blog. The slides will also be made available on slideshare.net/g riswoldhomecare. Just to conclude the webinar, I want to thank our attendees Chris Kelly, the director of training and development at Griswold Home Care, Kelly Howard, our national event manager for setting up the webinar. And I want to conclude by saying that Griswold Home Care is a mission-driven care services company that celebrates, educates, and advocates the choice to remain independent at home. Our founder, Jean Griswold, life of a Presbyterian minister, started the company 31 years ago after being diagnosed with MS. Today, Jean’s mission of compassionate care extends over 32 states. We want to thank you for your time on the webinar today. Have a great week.
In case you missed it, you can see a recording of last month’s webinar on Multiple Sclerosis here.
Griswold Home Care hosted a free webinar for professional caregivers, healthcare providers, and families living with Parkinson’s Disease.
Clients with Parkinson’s Disease (PD), family caregivers, and healthcare providers are invited to view this recorded webinar that includes:
- Recent research highlighting the importance of treating the “hidden” symptoms of Parkinson’s Disease
- Stories and experiences shared by clients and family caregivers through social media
- Practical strategies for managing depression, anxiety, and grieving
- A PD Solutions toolkit offering interactive tools and resources
