Dan Keller 0:08 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow, the Parkinson's Foundation is introducing its new hospital safety guide, building upon the former Aware in Care kit. The guide provides updated and new information for staying safe and empowered during a hospital visit. Its expanded format provides all the essentials that one should consider before a hospital encounter. Annie Brooks, Director of Strategic Initiatives at the Parkinson's Foundation, explains some of the features of the new hospital safety guide and how best to use it. When we spoke, I first asked her how she came to her current position. Just to begin, why don't you share a little bit about yourself and how you got involved in the Parkinson's area?
Annie Brooks 1:33 I have been working at the Parkinson's Foundation now just over nine years, and I started at one of our chapters as a community program manager, and have shifted over the years, and now I'm really proud to focus on our hospital care initiative, both working with institutions and clinicians to change how they care for people with Parkinson's in the hospital, and what we'll be talking about today, the community facing hospital safety resources that we offer
Dan Keller 2:16 for people who've been listening to the podcast for a while or familiar with the Parkinson's Foundation website or the foundation itself, they probably know about the Aware and Care Hospital Safety Kit, but that's now evolved into the hospital safety guide. How are the two different?
Annie Brooks 2:36 Yes, it's a great question. The new hospital safety guide, you can think about it as the updated and improved version of the Aware and Care Hospital Safety Kit. This new guide incorporates diverse feedback from the broader Parkinson's community, including the Parkinson's Foundation people with Parkinson's Advisory Council, as well as other community members, and we brought together some folks from our helpline. We brought together health professionals who worked in the hospital setting, and we brought together health professionals who are Parkinson's experts to really make sure it had everything that we needed, and nothing that we didn't need, so it has a new look and a new name, but it remains that tangible critical resource that people with Parkinson's can bring with them to the hospital to advocate for what they need.
Dan Keller 3:37 Volunteers who did outreach have been called owner and care ambassadors, now they're called Parkinson's Foundation ambassadors. Is there any difference?
Annie Brooks 3:46 So, volunteers continue to be a huge part of how we reach out into the community, and so Parkinson's Foundation ambassadors generally can speak a little bit about our hospital care initiative and the hospital safety resources that we offer, but we did just launch a new online course for Parkinson's Foundation ambassadors to prepare them to go out and talk about the hospital safety guide in support groups, in exercise groups, at community programs, so that Aware and Care Ambassador title is gone, but we still are working with our volunteers to go out and speak to the folks who need to know what they need when they're headed to the hospital.
Dan Keller 4:37 The hospital safety guide replaces the kit. What's new or updated in it that was not in the wearing care kit?
Annie Brooks 4:46 So, there's actually a lot of new helpful information. We took what was in the wearing care kit and kept what we liked, but we really tried. Guide to align it directly with our hospital care recommendations, which were developed for clinicians and hospital leaders, so that people with Parkinson's and the clinicians who are treating them are working towards the same goals, they're speaking sort of the same language, so sort of at the heart of the hospital safety guide are the five Parkinson's needs, where we're really direct, and it's giving folks with Parkinson's and their loved ones the language they need to say this is what I need, and then we provide additional information about why you need it, what you can do while you're in the hospital to get it, and what challenges you may face
Dan Keller 5:46 now that you bring it up. Why don't we go over some of those five care needs? Can you walk me through them?
Annie Brooks 5:51 Yes, absolutely. So, first I'll say broadly, these five needs focus on three priority areas. There's, of course, medication management, but we also, within the guide, now talk about needs focused on movement and on swallowing, so those are pretty new, and so I'm excited to walk you through them.
Dan Keller 6:16 Okay,
Annie Brooks 6:18 our first Parkinson's care need is I need my hospital chart to include my exact medications and match my at-home schedule, so this is tricky because hospitals typically in the electronic health record are saying how many times a day you take a medication rather than what time you take your medication, and so just because someone with Parkinson's takes those medications four times doesn't mean it's the four times that the nurse is going to come through and give it to them, unless they put the specific times in, so getting the medications timing ordered correctly is that first need. Need number two is still focused on Parkinson's medications. It says I need to take my Parkinson's medications within 15 minutes of my usual schedule. So first need you need to order them correctly, and the second need is you need to give them to me correctly, and the third need is also focused on medications, but rather than focusing on the medications you take for your Parkinson's, it's focused on medications that you shouldn't take because of your Parkinson's. So, it says I need to avoid medications that make my Parkinson's worse, and this can include those that block dopamine, sedatives, and certain pain medications.
Dan Keller 7:52 You had mentioned the need to move, so how is that implemented or instructed to the hospital staff?
Annie Brooks 7:59 Yeah, so what we recommend folks say is that I need to move my body as safely and regularly as possible, ideally three times a day. Now, if you're in with a broken hip, you're probably not going to get up and walk around, that wouldn't be appropriate. It has to be tailored to what is safe for you in that moment, but overly limiting movement is only going to make your Parkinson's symptoms worse.
Dan Keller 8:30 As far as swallowing goes, would that be a one-time assessment when the person comes in, or is that throughout the hospital stay?
Annie Brooks 8:39 It's a good question. We really want to see folks with Parkinson's being screened early, but also really thoughtful approaches to how any swallowing issues are managed. So, what we have in the guide, I need to be screened for swallowing changes in order to safely maintain my medication routine and minimize my risk of aspiration, pneumonia, and weight loss. So, we want to make sure that we know if swallowing has been impacted. We want to make sure that we're addressing it, but we also want to make sure that we're not withholding medication for minor swallowing issues that might be made worse by missing the Parkinson's medication, so as you can see this one's really tricky, and to be honest with you, there's a lot that we're doing in our clinician-facing work to really iron out where those lines are, where if you get to this point in issues with swallowing, then you need to stop Parkinson's medications. Those lines aren't all that clear right now. So, what we really need for folks with Parkinson's and their loved ones to know is to talk about this and. And to advocate for themselves to be assessed, and that medication holds should be very intentional. You need to think hard before you tell a person with Parkinson's not to take their Parkinson's meds.
Dan Keller 10:17 If the guide specifies what medication someone is on, and when they take them, how do they keep it current and work with their providers, so that they have current stuff to bring in to show the people in the hospital.
Annie Brooks 10:31 We recommend that any time your medications change, you need to fill out the medication form again. So, within the guide there are multiple copies of the medication form, but you also can go on to parkinson.org's and pull up the form there. If writing is challenging, as we know it is for people with Parkinson's, you can type directly onto that form and print it, and the benefit there is you can print multiple copies, you can make sure that you're keeping some in with your guide, maybe you keep one in your glove box in your car, so that you have the medication schedule with you, and it's the current one. And one more thing, I want to say about medications and the medication schedule, you really want to make sure you're being specific, so if you take carbidopa levodopa, specify whether it's the immediate release tablets, the controlled release tablets, or the extended release capsules, those are all different forms, and you want to make sure that you're including the two numbers that are associated with your carbidopa levodopa, one of those numbers is for the carbidopa, and the other is for the levodopa. So you want to make sure you're really clear about what the medicine is, and then the actual time that you take each dose. So the more specific you are on that form, the more information you're able to convey to the nurse or the doctor or the pharmacist who is going to use that as their resource, especially if you are not able to communicate as well as you usually would, based on whatever brought you to the hospital.
Dan Keller 12:18 A basic question would be, Who's the guide for and how do they access it?
Annie Brooks 12:23 The Parkinson's Foundation Hospital Safety Guide is a resource for people with Parkinson's and their care partners, and it's filled with tools to really help them navigate a hospital stay and prepare to navigate a hospital stay. So the two main ways to get your hands on one of these free guides is by visiting our website, parkinson.org/hospital's safety, will take you right there to the page, and the other way to order is by calling our helpline. The
Dan Keller 12:58 guide is pretty long, it's like 68 pages, but it's not all text. There's infographics, and it's pretty accessible, and it's easy to go through. But where would someone begin? What are the top recommendations for starting with the guide?
Annie Brooks 13:14 I would recommend that every person, when they receive their hospital safety guide, that you start with the step by step hospital safety plan. This will help you build a hospital go bag. You can think of this as a similar concept as someone might pack when they know they're going to have a baby. You want to have everything you need ready to grab, so that in the chaos of the moment, when an emergency happens, you're ready, and so building the go bag is a piece of that, that step by step planning guide, and the other piece that's really important is making sure you have designated a hospital care partner, this may be your spouse, the person who maybe is your regular care partner who's navigating Parkinson's with you every day, but it may not be. It may be that your neighbor has medical background and feels good about accompanying you to the hospital to be the person who helps you navigate. It may be that an adult child is going to step in rather than that primary care partner, but you want to make sure whoever it is that they know this is a role they're taking on and that they understand your needs in case you are not able to communicate them because of that injury or illness that brought you into the hospital.
Dan Keller 14:36 People have a relationship with their neurologist or movement disease specialist. When they go into the hospital, they're all new. These people don't know them, and it sounds like the guide is a great way for the hospital staff to get up to speed. By the same token, if you're traveling and you're in a different area, those people don't know you. So, is the guide useful to take with you when. You travel
Annie Brooks 15:01 definitely bring the guide with you. Having everything you need for a hospital visit prepared in advance will help you in case an emergency happens while you're traveling. You can use the trip preparation period as an excuse to make sure that your medication form is up to date and aligned with how you take your medications, you can use this as a reason to check in with your Parkinson's doctor and say, "Hey, I'm going to be traveling. Is there anything I should know? Is there anything I should bring? If you haven't gotten the doctor's letter, which is within the guide signed by your doctor, this would be a great time to do so. And I'll just mention, if you're flying and potentially checking bags, we always recommend keeping your medications and your Parkinson's Foundation Hospital Safety Guide in your carry-on, because you never know when that checked luggage is going to get delayed or even lost,
Dan Keller 15:56 especially with summer travel and crowds. Yeah, absolutely, so if you could identify one or two action items for people new to the guide, what should they start doing?
Annie Brooks 16:10 The first thing is to order or download the guide from the Parkinson's Foundation, again either at parkinson.org/hospital's safety, or by calling the helpline at one 800 for PD info, and then once you have the guide, you want to start with that step by step hospital safety plan to make sure you have a plan, and then when you've gone through that checklist, really dig into those five Parkinson's needs, so that you understand your needs and feel confident talking about them in real time when an emergency occurs.
Dan Keller 16:52 In terms of the hospital safety guide, have we missed anything, or is there anything interesting to add?
Annie Brooks 16:58 I think we've covered most of it. I will say that, as you said, it feels like a big book when you hold it in your hands, and that's a good thing, because it has a lot of resources in it, but it can be intimidating. So, I would just say to folks who are listening, whether you are a person with Parkinson's or the loved one of a person with Parkinson's is to not be intimidated to take a look at that step by step hospital safety planning tool, and at least get the ball rolling, because anything that you do in this moment before a crisis occurs is going to help you in that future crisis moment, because the unfortunate reality with Parkinson's, and frankly with all of us, is that it is not a question of if, it's a question of when you will need to go to the hospital, and so when that time comes, you want to have all the tools at your disposal, and as much knowledge of what those tools are, while you are figuring it out in the moment,
Dan Keller 18:14 and it's probably worth noting, we're not talking just about getting hospitalized for Parkinson's disease, but with it, people get injury, sprain an ankle or twist something, or get a cut. So this probably serves anybody who ends up going to the hospital, or an urgent care, or whatever.
Annie Brooks 18:34 Yeah, absolutely. It could be a planned knee surgery, it could be a car accident, it could be anything that brings you to the hospital, but you're bringing your Parkinson's with you, and so your Parkinson's needs have to be in your mind as a priority, because, especially like in the emergency department, they're going to be focused on what brought you there, not on your Parkinson's, but your Parkinson's is there with you, and those needs don't go away just because you broke your wrist.
Dan Keller 19:04 Absolutely, I think we covered a lot. This is a great introduction to the new hospital safety guide, and I hope people take advantage of it, fill it out, carry it with them, and never need to use it.
Annie Brooks 19:18 If you never use it, that's fantastic, but much better to have it and not need it than to need it and not have it.
Dan Keller 19:35 As Annie mentioned, there are a few ways to get the free hospital safety guide. You can go to our website at parkinson.org/hospital's safety to view and download it immediately, or place an order to have it delivered to your home. You can also speak with one of our helpline information specialists to order it. Our information specialist can also help you now. Navigate the guide, and remember the hospital safety guide is not only for hospitalizations, it's a resource to keep handy for when you travel, in case you have an unexpected medical situation. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback's If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till next time, for more information and resources, visit parkinson.org's or call our toll-free helpline at one 804 pd info, that's 1-800-473-4636 Thank you for listening.
