Dr. James Beck 00:00:03
Hi there, and welcome to our last webinar in this series from the Parkinson’s Foundation Expert Briefing Series. This is our ninth series so far in our existence. The title of today’s talk is Living Alone, Home Safety and Management in PD. I’m Dr. James Beck, your host for today’s discussion.
I’ll tell you a little bit about our webinars. They’re not created in isolation. These are ones that have really been developed through the feedback of the community, and I’m really pleased that our regional Parkinson’s organizations, part of our Alliance of Independent Regional Parkinson’s Organizations, called AIRPO, are working with us together to help generate the topics for these and our webinars, which are coming up for our next series in 2018-2019. I’ll tell you a little bit about that at the end of our discussion today.
I’d also like to thank our sponsors. Our sponsors are critical for helping to support this series, and we’re very indebted to their generous support. AbbVie, Sunovion and Lundbeck, thank you for your support.
If you want the slides that are going to be presented, take a look at your screen. There’s a button in blue that says Download Slides. Just click on that button, and you’ll be able to download a PDF file that you can look at at any time during this webinar or even after.
If you’re a health professional, you have an opportunity to earn one free CEU through the American Society on Aging. If you’ve registered as a health professional during the registration process and indicated that you would like a CEU, you will receive an email by the end of today on how to collect this credit. Remember, you only have about 30 days, until July 5, to collect your free CEU. Act fast on that.
It’s my pleasure to welcome our guest speaker today. Dr. Erin Foster is an assistant professor of occupational therapy and neurology and psychiatry at Washington University School of Medicine in St. Louis. She just received her clinical doctorate in occupational therapy in rehabilitation science and has completed postdoctoral training in clinical neuroscience and cognitive neuropsychology at Wash U.
Dr. Foster’s research focuses on understanding how cognitive dysfunction in Parkinson’s disease impacts everyday life and how cognitive rehabilitation approaches for PD and general self-management can be used to improve PD. She has federal and foundation research grants related to this topic and is a licensed occupational therapist and consultant with Wash U’s program in occupational therapy and clinical practice. Dr. Foster helps guide therapists treating clients with Parkinson’s disease and related disorders. Dr. Foster, welcome to our conversation today.
Erin Foster 00:02:33
Thank you for the introduction. This talk is about managing home safety problems, and the title is Living Alone, but really most of the things I’ll be discussing today will also be relevant for people who live with others. I understand that there are care partners in the audience, so that’s good.
I also want to give the caveat that I understand there are people from a number of different countries listening in. I’m from the United States, and many of the examples and some of the details that I’ll be talking about might be specific to the United States, but there’s still plenty that you can take away if you live in other countries.
All right. First, I’m going to present a framework and a process for thinking about and solving home safety problems. The idea is that I’m going to give you some generic tools that you can start using to solve your own problems. The generic tools are going to be relevant to everyone in the audience, whereas the specific solutions that will result from using these tools are going to be highly individualized.
Then I’m going to apply the framework and the process to the home safety issue of falls in Parkinson’s disease as an example. Again, these frameworks and this process can be applied to any home safety issue or functional problem. That’s what you’ll have to work through and figure out and practice after this talk.
Then I’m going to cover a few other specific topics related to living alone. Again, many of them will be relevant for people who don’t live alone. I have a lot of information to cover and not a ton of time, so throughout the talk, I’ll be providing some resources that you’ll have to explore on your own after this talk.
I also want to remind you that, in addition to being able to download the slides, this will be recorded. It’ll be available on the Parkinson’s Foundation website after about a week if you want to listen again and review.
Erin Foster 00:04:46
All right. This figure is a synthesis or adaptation of models that occupational therapists use to understand someone’s function in daily life and to guide their treatment. Someone’s performance or participation in daily life is determined not only by their personal abilities, but also by the activity that’s being done and the context or the environment in which it’s being done.
Many of you with Parkinson’s disease, when you think about your daily function, probably attribute any functional problems or changes that have occurred to changes in your own personal abilities that have resulted from Parkinson’s disease itself.
However, activity and environmental factors also play a role in your daily function. Activity factors are characteristics and the demands of the things that you need and want to do, as well as how you do them. Environment factors are basically where you do things in terms of physical space, but social, political and cultural contexts are relevant as well.
It’s the dynamic interaction of all of these factors that result in your daily function, which for our purposes today is your safety at home. The nice thing about this model is that it provides multiple modes of entry or different types of solutions for functional problems.
In the case of falls in Parkinson’s disease, it’s possible to improve person factors or person abilities like balance or gait and reduce the risk for falls. However, at least with our currently available treatments right now, it’s unlikely that these abilities are going to return to normal levels, so the risk for falls is still elevated. Luckily, there are other avenues — changes that you can make to your activities and the environment — to further reduce your risk. We’ll spend some time talking about those today.
Okay, so that framework provides some content related to solving daily functional problems, and now I’ll walk you through a general process for doing so. Many of you may be familiar with this general problem-solving approach. We’ll go over it quickly now and then more concretely as we apply it to falls. One way to label it is Goal Plan Do Review. That describes the four main steps of this problem-solving process.
Starting in the top left with Goal, first, you need to define and understand the details of the problem, and then develop a goal or an end state that you want to be in. What realistically would it look like if this problem were solved? Then you plan.
Once you have a really good idea of what the problem is, you brainstorm potential solutions, and then you pick one or multiple to try. If it’s a complex solution, you might need to list the steps or make a detailed plan for exactly how you’re going to implement it, and that’ll increase the likelihood of actually doing it. Then you do it.
Erin Foster 00:07:38
You try it out. You want to make sure you give it a good effort and a chance, because some things might take some practice or some time to settle in before you know what the effects are going to be. While you try it out, you pay attention to whether and how it’s working. So you review it.
You may find that it’s just not going to work and it needs to be scrapped, in which case you try something else from that list that you generated in the plan phase. Alternatively, it may just need some modifications to work.
Once you’ve found something that seems useful, you can kind of hang around in the do and review phases, making slight tweaks to optimize it so it’s the most efficient and effective that it can be. At this point, you can even consider layering in other solutions that you generated during that plan phase.
It sounds simple enough, right? Many of you probably already use this type of approach intuitively, but I’ve found that being very explicit about it, knowing what the steps are and where you are in the process, really improves its usefulness and reduces the likelihood that you might give up trying to solve a problem before you’ve considered all possible options. It helps you be thorough.
Okay, so now we’re going to apply these two models to the most common home safety concern in Parkinson’s disease, and that’s falls. Falls in people with PD occur at double the rate compared to the general older adult population. The risk for falls increases with disease duration and severity, but they’re also common early in the disease, so the problem is relevant for most anyone with Parkinson’s disease.
We all know there are many negative consequences of falls aside from the injury and possible pain caused by the fall itself. They can lead to difficulties performing activities and loss of independence. They contribute to caregiver burden and nursing home placement. They can also result in fear of falling, which is a risk factor itself for future falls and restricted activity, and they’re associated with reduced quality of life and participation.
There are a number of risk factors that can increase the risk of falls in people with Parkinson’s disease. Many of you probably know about the person changes caused by PD or its treatment that can contribute to falls. These are things like postural instability, gait problems and visual changes. There’s also orthostatic hypotension, that drop in blood pressure when you get up. Even things like anxiety and stress can increase other Parkinson’s disease motor symptoms and thus the risk for falls.
Erin Foster 00:10:20
Again, there are also activity- and environment-related factors that can interact with your personal abilities to cause falls. Some activity-related factors that contribute to falls in PD include dual tasking, or trying to do two things at once, specifically something that requires thinking while walking.
There are also temporal issues, or issues related to time. In Parkinson’s disease, your function can fluctuate throughout the day, and your risk for falls will correspondingly increase or decrease throughout the day. Also, when people are experiencing time pressure and start to hurry, that can increase their risk for falling.
Sometimes you go through the movements on autopilot or without thinking, which is especially problematic for people with PD, who lose some automaticity and thus need to pay more attention to what they’re doing. There are some specific activities that are associated with falls in people with Parkinson’s disease, and that includes reaching and bending, turning and transferring to and from surfaces.
Environment-related factors that contribute to falls in PD include tripping hazards like throw rugs and cords due to shuffling gait, inadequate lighting and, if you have problems with freezing, being in crowds or going through doorways. Those are some environmental factors that might trigger a freeze and a subsequent fall.
Remember, falls result from an interaction of these factors. It’s not only that you have poor balance because of Parkinson’s disease that causes falls, but it’s because you have poor balance and you were reaching to get something from the top shelf while being in a hurry.
All right, so how can we address this problem? Now we’re going to move on to Goal Plan Do Review, that problem-solving process. First, as I said, you really need to understand the problem. The previous slide helps us understand falls in general in Parkinson’s disease, but the key risk factors or their combination is going to be slightly different for everyone. It’s highly individualized.
The best way to understand your specific problem, if it is falls, is to start a fall diary or a log. This fall diary or log is not only for recording that a fall happened, but for really analyzing the falls, really understanding the circumstances under which they happen. You also probably want to do this for near falls, because prevention is important.
I would say that it’s best to try to complete the log or the diary right away, but I know that’s not always possible, so you might need to set aside some time each night or each week to review your falls.
Erin Foster 00:12:58
Your fall log should serve the purpose of prompting you to answer these questions, and you really want to be specific in your answers. Where was I? What was I doing? An example of being specific would be, instead of saying, “Oh, I was making dinner,” you’re going to want to say, “I was getting the bowl from the top right cabinet while I was making dinner.”
When did it happen? That could be the time of day. It could be your medication status. It could be before or after certain events. It happened after the grandkids left. How did I feel? Was I tired? Was I on or off medications? Was I stressed? Or did I feel just fine?
Then you’re going to take some time and really try to think about why it might have happened. You might not know for sure, but I encourage you to take a guess, and you may start to notice patterns. You can use that person, activity, environment framework to help you think of all possible reasons and really be thorough.
This is really important, and it leads into the next step of the process, but try to come up with answers to the following questions: Is there any way that the fall could have been avoided, or anything you could have done differently or would do differently next time to avoid it? You’re going to want to be as creative as you can for these last questions. Remember that you’re the one who has expertise about yourself and your situation, so don’t be afraid to answer these questions creatively. Like I said, you might start to notice patterns.
At the same time, it may also help to share your fall log with someone else and get their input, because they might think of things that you didn’t think of.
You’ll gather data, you’ll start to grasp the problem, and then it’s time to come up with possible solutions. This is where thinking about the person, activity, environment framework can be very helpful. As prompts to brainstorm solutions, ask yourself these questions: What can I change about myself or the person? What can I change about the activity — what I’m doing, how I’m doing it, when I’m doing it? What can I change about the environment, or where I’m doing it? Also, this is sort of outside of that framework, but who can I ask for help?
Erin Foster 00:15:08
There are lots of different answers to these questions, and the answers are highly personal and individualized. Now I’m going to go through some common and relevant answers for people with Parkinson’s disease.
I’m not going to spend too much time on person factors because Dr. Fay Horak actually gave a great webinar on the best solution related to person factors earlier this year, so I encourage you to check that out. Basically, the solution with the most supportive evidence at the moment is exercise or training to improve your balance, your gait and your functional mobility.
Other possible ways to address some of the person-related risk factors for falls are speaking with your doctor about adjusting your medications to potentially deal with wearing off issues, dyskinesias or orthostatic hypotension. You probably should even share your fall log with him or her because they might be able to notice patterns that may be associated with your medication regimen, so it might help them tweak your meds.
Practicing mindfulness may help to reduce stress or anxiety, which could reduce falls, and also ensure that you aren’t hurrying, but instead are attending to the act of walking and how your body feels so you don’t act before you’re ready. It can reduce that autopilot mode that I talked about, where we move without thinking.
To the extent possible, you’re going to want to practice good sleep hygiene or seek treatment for any sleep disturbances to possibly reduce fatigue and daytime sleepiness.
Now on to activity- and environment-related changes. I want to note that these are common and anecdotally, clinically effective solutions, but there isn’t much research or evidence on these strategies specifically in PD to date. That’s something that we’re working on. As I said, these are well-known types of solutions that many people have found, or say are, useful.
In thinking about what you’re doing or how you’re doing it, activity-related factors, first of all, dual tasking or doing something else while you’re walking is a known contributor to falls in PD. You want to try to avoid that as much as possible. Dr. Horak actually presented some evidence related to training and getting better at dual tasking, but in your day-to-day life, especially if you’re alone, it’s probably best to avoid it altogether until you’ve potentially gone through that training and are confident, and other people are confident, in your ability to dual task.
Erin Foster 00:17:42
You’re going to want to wait until you’re sitting to talk on the phone. If you want to have a conversation with someone, stand still or find a place to sit. You can also sit down while you’re performing other daily activities like dressing or cooking.
Along the same lines, you’ll want to keep your hands free while you’re walking, so use a fanny pack, a bag or your pockets for items that you want to keep close at hand. This will help you avoid dual tasking, but it can also help you keep your weight centered, and it can allow you to swing your arms appropriately, possibly catch yourself if you fall or at least grab onto things for support.
There are a number of strategies for freezing specifically that people find effective. For example, if you freeze while you’re walking forward, you can try changing directions. You can try moving to the side for a couple of steps. Also, shifting your weight from side to side can often help you take that first step if you have gait initiation freezing.
Stepping over things is thought to help people come out of freezes. You can either step over a crack on the sidewalk or something that’s actually on the ground, a laser light, or you can try to visualize an item to physically step over. Creating an auditory rhythm might help, so singing, humming, counting or sometimes just stopping and taking a deep breath can help come out of those freezes.
While turning, instead of pivoting, try to make a rounded U-turn like in the picture.
Another way to change complex activities is to break them down into steps and focus on doing each step subsequently. This can make the task less overwhelming, and then it also helps you focus on each piece, again reducing that autopilot mode that I talked about.
Here’s an example on the slide of how to get out of a chair safely in a stepwise approach. Here’s one for getting out of bed. I actually had a better example specifically for getting out of bed for people with Parkinson’s disease, but they were a real person’s photos from a long time ago, and I didn’t have permission to use them here, so I found this on the internet.
It’s actually for someone with back pain, which could be relevant, and it’s very similar to what we advise people with PD, except not necessarily with the pillow. In between steps three and four, to roll over to your side, we actually have the person use their far arm to reach across and help them twist their upper body. I just wanted to point that out about that specific picture, but it’s just an example of how you can break down more complex activities into steps.
Erin Foster 00:20:24
Once you come up with the steps, you can create short versions or acronyms for those steps, and you can recite them out loud while you’re doing them, or you can use signs or reminders strategically placed around your home to remind yourself of the steps or to use this stepwise approach.
Other activity-related strategies have to do with taking a broader look at your day and planning your daily routine. You’re going to want to plan to do your more physically demanding or high fall-risk activities at the time of day when you’re feeling your best, and then potentially more sedentary activities when your functional mobility might not be at its peak.
If you have fatigue, you might need to build in rest breaks or short naps throughout the day. In general, you’re probably going to want to start giving yourself extra time to get things done to reduce some of that time pressure. It always takes me more time to get things done than I think it will. In thinking about people with Parkinson’s disease, where you move more slowly and have to be more deliberate about things, this is going to be even more important. This follows that you might have to cut your to-do list down a little bit each day.
There’s a plethora of adaptive equipment or devices available to help people do all sorts of things on a day-to-day basis around their home and to stay safe. I have some pictures at the end of the presentation that will be cycled through just for some examples that are particularly helpful for people with Parkinson’s disease. As I said, there are so many available to suit whatever need that you might have. This equipment or these devices don’t have to be used all the time. They can be used on an as-needed basis.
Once you’ve gone through that goal phase and you’ve thoroughly analyzed and understood your problem, you’ll be able to know when you may or may not need to use assistive equipment and devices. You might only need your walker for at night when you need to use the restroom. You might only need a scooter for community mobility, but not at home. You might only need to sit while you’re cooking dinner, but not necessarily breakfast or lunch.
Finally, in terms of clothing, you’re going to want to avoid changing the types of footwear that you wear to reduce the need to adapt to different types of footwear. You also probably want to avoid long, loose clothing that could cause tripping or get caught on things.
Erin Foster 00:23:07
In terms of environment-related changes, when we’re talking about home safety, these are often called home modifications. These are some general principles with a few examples, and again, I have pictures of some of these examples at the end of the presentation.
Changing the layout to increase walking and turning space is a good idea. Adding different forms of support around the house, so that could be grab bars, especially in the bathroom; railings, walkways and stairways; and also places to rest. Raising the surfaces, your transfer surfaces, so your beds, your toilets, your chairs. Removing fall hazards and obstacles. Reorganizing the items in your home to avoid bending and reaching.
Also, keeping commonly used items close at hand or with other items that they’re used with. This idea has to do with better organizing your home so that it’s more convenient and safe for you to use.
You want to make sure that your lighting is adequate in general, so bright enough and reducing glare, but also that you have additional lighting as needed. That could be night lights or flashlights.
In terms of cognitive home safety supports, you’re going to want to reduce distractions, so turn the TV off or the radio off. You can also add signage, reminders or prompts throughout the home to remind you to use, for example, your fall prevention strategies or your stepwise activity approach.
Then I have this section on external cues for gait and freezing. There are various options for this. It can be highly individualized in terms of what works for whom. There’s a ton of research in this area, so it’s actually probably a talk in and of itself. I’m just mentioning it here as an option, and I encourage you to see a professional if you do want to pursue that option. I have some pictures, too, at the end of some cues that are helpful for people with PD.
All right, so you’ve brainstormed a bunch of possible solutions, and now it’s time to pick one or a few and try it out. As I mentioned before, if it’s a complex solution, you might need to list the steps or make a detailed plan for exactly how you’re going to carry it out.
Say you’ve come up with a solution of starting to exercise. It’s not necessarily as simple as just going out and starting to exercise. You need to figure out what it is that you want to do for exercise. You might need to locate a gym or a class or somebody to do it with and figure out the schedule. Those are the steps that you need to list out to make sure that you can achieve that goal.
Erin Foster 00:25:51
Also, if you decide to implement some home modifications or get some adaptive equipment, you'll need to figure out how to access those services. This is a great idea, which I can't take credit for, but you can ask family or friends for some of these things as gifts. These days, people ask me what I need for my birthday or a holiday, and I can never think of anything. This would be the perfect opportunity to ask for some of these items that you might actually need. I'm sure that your gift givers would probably love the idea of getting you something that would actually help you out more than getting you another tie or a candle, or whatever it is they were going to get you.
Don't be afraid to ask.
All right, you picked your solution, and now you start testing it. I want you to think of it in terms of testing or trial and error because not everything is going to work for everyone all the time, and probably definitely not the first time. You really need to approach it like an experiment. You're going to try it out, and you're going to think about what's working or not working about it. You might give up on it and try something else, or you might just need to make some changes to it and try again, etcetera. As I said before, you want to make sure you give it a fair chance. Once you've found something that seems useful, you can work on optimizing it, and then you can even layer in other solutions.
At least with falls and Parkinson's disease, I think all of you should, if you aren't already, definitely adopt the exercise training solution for sure, and then try to layer in activity and environmental changes to further reduce your risk.
I've quickly gone through some examples of potential solutions for falls, but there actually exists a great tool developed by the Occupational Therapy Geriatric Group at the University of Buffalo that people can use on their own to prevent falls at home. It's called the Home Safety Self-Assessment Tool. The whole thing is freely available online. I've provided the link, but you can also just Google it, and it'll come up.
This tool is so practical and useful. It provides a number of different things. It provides a checklist with common home safety problems and solutions for 10 different areas of the home. It provides a list of 31 vetted assistive devices and products, step-by-step instructions and pictures for some common home improvements, and a list of additional fall prevention strategies.
If you live in Erie County, New York, there's a list of providers of home modification services, durable medical equipment, and other organizations. It also has Americans with Disabilities Act guidelines for the home environment, so how to make your home environment accessible, and an action log so you can keep track of your home hazard removal process.
I know this slide isn't very readable, but I'm just providing it as an example of the home safety checklist. This is the kitchen, and you can see on the left side that it has pictures and a list of potential problems or hazards, and then on the right side, a list of solutions for each of the hazards and references for those solutions and problems. Again, this is designed for anyone to use, and it's freely available online, so I encourage you to check it out. It'll really help you with your home safety problem-solving.
Finally, these are a couple other particularly useful links with strategies for improving home safety, especially related to falls, that I found online. Our very own Parkinson's Foundation has a page about home safety, and then AARP has this great infographic with 31 tips for future-proofing, they call it, your home.
You can do this process alone or with input from friends and family, but I also strongly encourage you to seek professional help. There are people out there who are professionals in this realm. You want to look for occupational and physical therapists in the area who specialize in movement disorders, Parkinson's disease, neurological rehabilitation, or even home safety. You might want to look into your university movement disorder centers or contact your local PD organization for referrals. For home safety, it's really ideal to find someone who will come to your home.
Erin Foster 00:30:30
But I've also done this sort of thing by using pictures that people have brought to me of their homes, so it can be done remotely. I would say that it's probably worth traveling to a specialist. That might be more important, to find somebody who specializes in Parkinson's disease or home safety, than trying to find somebody close by.
These professionals can walk you through that problem-solving process and help identify and implement the best person-, activity-, and environment-related solutions. They can also provide assistance with procurement of those solutions. They can help you locate resources, help you actually purchase the stuff, get the best deal, navigate the insurance system, etcetera.
A few things to keep in mind as you embark upon this problem-solving journey. First of all, there's not going to be one magic solution. Many functional problems are complex and multifactorial, and they may require multiple different solutions that depend on a number of variables. Along those lines, I want you to remember that it's an iterative process. It'll require some trial and error. It's important to be persistent and adopt the perspective that if your plan or solution doesn't work, it's not a problem with you. It's simply a problem with the plan. You just have to come up with or try another one.
Definitely try to seek outside input from friends, families, and professionals every step of the way. You aren't expected to be able to think of everything. Oftentimes, different perspectives help, so they can help you think outside of the box.
You may have to manage your own expectations a bit. You aren't going to be able to completely eliminate every problem, but maybe a 70% reduction in a problem is still considered a success.
In general, I talked about this a little bit, but you need to make sure that what you're expecting from yourself on a day-to-day basis is realistic and necessary. For example, that fuzz ball on the floor doesn't need to be picked up right now. It can wait until you're feeling better or until somebody comes home to pick it up.
Also remember the ultimate goal, so keep your eye on the prize. The purpose of walking isn't to walk, per se, but it's to get from place to place. When it isn't safe for you to walk, try a different way of getting from place to place. Maybe a wheelchair, maybe a scooter. Think about why you do the activities you do and how you can still get that fulfillment or achieve that end goal in a different way.
All right, now moving on to some specific tips related to making living alone easier and safer.
A lot of it just has to do with planning and organization. For example, you want a place for everything. Always put important things in the same place: your glasses, your keys, your wallet, your medications. Think about the things that you use a lot or information that you access a lot, and consider having multiples around the house to reduce the need for walking around to get them. It's just more convenient that way, and it'll improve your safety.
You can also consider automating as much as you can in your home so that you don't have to think of it all yourself and so that you can control things remotely if, for example, you forget to close the garage door before you leave on vacation. You can do things like get timers or motion sensors for your lights and get automatic features on your appliances, like something that shuts a burner off after a certain amount of time. There are a number of fancy integrated smart home systems that allow you to do all sorts of things these days, so they're worth checking out.
Erin Foster 00:34:18
In terms of medical emergencies, you're going to want to make sure that you have a way to contact emergency response very easily, especially if you live alone because somebody's not going to be there to do it for you. Make sure that 911 is a click away or that you have a personal emergency response system like a Lifeline.
You'll also want to make sure that your medical information is easily accessible to others. That could be either in the form of a bracelet or a card. The iPhone Health app actually has an option to create a medical ID that's accessible from your lock screen, so anybody could access it from your lock screen. You're going to want to make sure that you include the fact that you have Parkinson's disease in that medical information.
You can also contact your local law enforcement, emergency medical services, or 911 operations to provide them with information so that responders know of your Parkinson's or that you live alone. In my community, the police department's dispatch system allows them to flag any address to alert dispatch and officers of just about any situation, so that they know what they're getting into if there's a call placed to your address. My community also has an Access and Functional Needs Registry, and that's a confidential emergency preparedness registry for a resident who has any condition that might warrant the provision of additional assistance during disasters.
I encourage you to look and see what resources are available in your community for emergency response, so people know that you might have special sorts of needs.
Finally, since Parkinson's disease can cause swallowing problems, you should learn to self-Heimlich. FYI, if you do ever have to self-Heimlich and it works, and you're not choking anymore, you still need to seek medical attention to make sure that everything's okay after that.
We all know that Parkinson's disease is a complex condition, so even non-emergent medical care is a lot for one person to manage on their own. Again, the main tip along the lines of planning and organization is to prepare for your appointments ahead of time. You want to think of and record questions to ask, and then have a mechanism for recording the answers and anything else that was said during the appointment. I put write on the slide. I know that's hard for many people with PD. You can also type or, better yet, use an audio recorder. Or even better, take somebody with you to do this while you're talking with the doctor.
The Parkinson's Foundation actually has this really great Aware in Care Kit to help people with PD receive the best care possible while they're in the hospital. It especially has a lot of information in terms of receiving the appropriate medications. I'll show that on the next slide, but the link is also right here on this slide.
In the event that you become unable to participate in medical treatment decisions, you're going to want to make sure you've designated somebody with durable power of attorney and that you've completed an advance medical directive, so that it's clear what you want to happen in terms of the medical care you receive. Again, relevant for anybody, really.
This is just a picture of the Aware in Care Kit. There's a lot of detailed information on the website. On the right is the table of contents for the Hospital Action Plan. You can see that it has detailed and practical information on what to do before, during, and after a hospital stay, and how to communicate about your condition. Very practical.
Erin Foster 00:38:03
All right, this is, I think, almost the last topic, but it's possibly the most salient for those in the audience who live alone.
Social isolation and loneliness is now recognized as a significant societal concern and a health risk, so much so that the UK now actually has a Minister of Loneliness. About a month ago or so, I was listening to public radio, and our past Surgeon General was talking about it. Social isolation and loneliness have been linked to all sorts of negative health effects, some of which are listed on the slide.
On the flip side, social engagement has been linked to numerous psychological, cognitive, and physical health benefits.
For your health, for your daily function, and for your safety, it's really important to try to stay socially connected. There are many ways that you can do this. You can become involved with your local Parkinson's disease organization, not only for social interaction and social support, but also for wellness and educational programming.
You're going to want to keep people in the loop as to what you're doing. Schedule regular social appointments or check-ins. Join a class or a club related to your interests. Volunteer. These things aren't only good for your health and well-being, but they also serve the purpose that if you don't show up, someone is going to notice.
You can also designate helpers from your social connections, so specific people for specific jobs that you might need help with. Use different people for different jobs so that you don't feel like you're relying all on one person or burdening one person.
Importantly, you can be their go-to for something. You likely have some skills or knowledge that you can contribute, so the relationship can be mutually beneficial. That's a way that you can ask people for help without feeling like you're burdening them in some way.
I've talked about this a little bit, but again, many communities have a wealth of resources available for people. Use them. That's why they're there. For Parkinson's disease, organizations like the Parkinson's Foundation or the American Parkinson Disease Association have disease-specific support, education, services, and programs. In the U.S., we have Area Agencies on Aging for people over 60 that provide transportation, home repair and chores, and meal provision. Other community resources like religious organizations, community centers, and even libraries have these sorts of services.
Erin Foster 00:40:47
211 is a free and confidential service in the U.S. and part of Canada that helps people get local resources. Lots of options.
These days, you can find almost anyone to do anything on the internet. These are a few of the recommended and vetted websites. Sites like TaskRabbit, Thumbtack, and HomeAdvisor can actually hook you up with people to do home repairs and help you get the best bid.
GoGoGrandparent is actually a great way to get transportation. It allows you to access the popular ride-sharing services of Lyft or Uber without needing to have a smartphone. You can go to the website or call this phone number, and they have operators available 24/7 to help you get rides. You can even schedule regular rides as well. You can set it up where it alerts family members just to keep them in the loop.
Again, Parkinson's disease is a complex condition. Daily self-management, preparing for the future, and making treatment-related decisions can be a lot for one person to consider and keep track of. Oftentimes, having another person around is helpful for that. It's also helpful for big things like falls and potential medical emergencies, but also even for little day-to-day tasks like changing light bulbs and preparing meals.
But these challenges are not insurmountable for people who live alone with Parkinson's disease. They just take extra planning, organization, and a willingness to reach out for support as needed. If you live alone or if you don't, you have control over this process. You have a lot of expertise and knowledge and skills to help yourself and to help others and to seek help when you need it.
Another point I want to make is that addressing all of these issues early is key for prevention and for maintaining your safety. It's going to be harder to make changes once problems start happening because you're going to be burdened by the problems, and it's going to become more stressful. It's best to try to anticipate challenges, plan, and take action so that you avoid problems before they happen.
With that, I will end, and I thank you for your attention. I think it will be time for questions.
Dr. James Beck 00:43:31
That's right. Thank you very much, Dr. Foster. Fantastic presentation. It was great to see, as you presented, that the questions that came in were just answered if people waited another slide. You really, I think, did an excellent job anticipating what people were asking.
But there are still some questions coming in that I think people would like to know, and maybe we can get a little more depth on them. One of the things you're showing, we're seeing some of the adaptive equipment that's being scrolled through right now on some of the slides. Is that equipment covered by insurance? Who pays for this stuff? If it's not covered, how do you prioritize what you should do first?
Erin Foster 00:44:12
Right, that's a good question. I can speak in general to what I know about how it works in the United States. Insurance like Medicare, and most insurance for older adults because it follows Medicare, typically will cover what they call durable medical equipment: special beds, things like canes, walkers, wheelchairs, commode chairs. But it won't really cover home modifications or adaptive equipment. If you're a veteran, VA insurance actually covers more. It will cover durable medical equipment and equipment and devices. I'm not sure about home modifications, though.
Most insurance, so a lot of this stuff, you're left to find and pay for on your own. But I will say that almost all insurance does cover OT and PT services, and those therapists can often help you. Speaking to your other question, they can help you prioritize which are the most important changes to make or equipment to buy. Then they can help you identify the specific pieces of equipment or modifications that best meet your budget. They can help get provider discounts. They oftentimes know of loan closets or places to get these sorts of things for low or no cost.
That's one way to navigate the system. Unfortunately, insurance doesn't pay for everything, but the thought is that as we do more research and we develop evidence for the usefulness of these products and changes, they will eventually be covered.
Dr. James Beck 00:45:53
Okay, that's fantastic. Speaking of the questions that are coming in, I want to give a shout-out real quick to Dan, my colleague Dan in Ohio, who's got 10 people there at a listening party. We've got people from all over the United States and 16 countries. We've got over 1,800 people registered for this call to listen to you, Dr. Foster, and we've got a number of folks: allied health professionals, nurses, people with Parkinson's, and the gamut who've really just been captivated by what you've been presenting.
Speaking of some of these tools and where to get them, I've got a question coming in from a care manager in Georgia. This person asks whether there's a central resource for ADA-compliant companies that can provide these kinds of services, like building ramps and chair lifts and things like that. Or is it, as you suggested, finding the local services through your occupational therapists who can do these home visits and know stuff? What is a practical way in each community to grapple with this situation, trying to find out who to get this from?
Erin Foster 00:46:56
Sure. I may be biased as an OT, but I think that a therapist who specializes in home safety would be the first and most ideal person to go to because they will have had lots of experience with possibly different providers and companies in the area, and they'll know which ones might work the best.
I would guess that these days there are a lot of providers that you could find through the internet that, if they do work that's ADA compliant or if they use universal design principles, it would say so on their website or they would advertise those services.
Another starting point would be to look at that Home Safety Self-Assessment list of providers in Erie County. That might have some providers that are specifically in Erie County, New York, but that might also have a national presence. I would just start googling ADA home modification providers or universal design home modification providers and go from there.
Dr. James Beck 00:48:18
Okay. One of the things that I really liked was this general problem-solving approach that you had, the four different things, and one of them was creating this fall log. How detailed does this fall log need to be? When do you stop collecting data? Is it the first fall, second fall, or do you just do this ongoing until your next physician's appointment or therapist's appointment where you can go over this information with them?
Erin Foster 00:48:50
Yeah. Sorry, did you have more?
Dr. James Beck 00:48:55
No, I just want to make sure I was clear because I was kind of rambling.
Erin Foster 00:48:58
I think I got it, but let me know. From my perspective, the more detailed the better, especially at first. Once you have enough data, and hopefully you don't have too much data because that would mean that you have many falls, you'll start to be able to notice patterns and pick out the details or the information that is important. I would recommend doing the fall log for as long as possible until you feel like you've addressed the problem to the best of your ability.
You do the fall log to understand the problem and to come up with possible solutions, but you should still continue to do it to track the outcomes of your solutions. You can do things like counting up the number of falls that you had before you implemented said solution and then how many you had afterward. Then you'll be able to tell what percentage reduction you've had in your falls. I think it can be something to initiate, and then it should be done on an ongoing basis until you feel like the problem is adequately addressed.
Dr. James Beck 00:50:10
Okay. Dr. Foster, do you know if there's a sample log online to take a look at, or is it just, as you mentioned, the kind of who, what, where, when type of information to capture?
Erin Foster 00:50:21
That's a good question. There may be a sample log online. I haven't looked. I have some samples that, if people are interested, I believe they can get my contact information, and I could send them out.
Dr. James Beck 00:50:39
We certainly can make that available. If you were to, our colleagues on the back end can add that to the presentation as a slide with some information. We can fix this in post.
Erin Foster 00:50:50
Okay, I'll do that, sure.
Dr. James Beck 00:50:52
Some more questions are coming in. When you think about these practical steps you had on getting up and issues like that, how easy is it to learn? As you know, many people with Parkinson's disease have, at the very least, executive dysfunction, many of them do, and then some cognitive dysfunction as their disease progresses that they have to grapple with. How easy is this stuff to pick up on a practical level?
Erin Foster 00:51:21
Sure. The process itself, because it is a very explicit stepwise process, and you can put it into writing so you can use prompts to guide you through each step of the process, people can just follow the rules. It's not like they necessarily have to memorize every step of the problem-solving process.
I would say the hardest thing to do, and this is for people with executive dysfunction and even without, if you don't necessarily have the requisite knowledge, is to come up with solutions for the problem. That's where brainstorming and not being afraid to be creative and coming up with anything you think of is very helpful. Just kind of let yourself go, but it's also where seeking advice or input from other people can be very useful.
The process itself, because it's a stepwise process and the steps are listed, they tell you exactly what to do. It's not so hard to learn, but it's some of the details on the inside, coming up with the solutions and maybe implementing them, where I would, if people are struggling with that, suggest they seek help again from family, from friends, from professionals, from that home safety assessment tool. There are resources out there to help with the details.
Dr. James Beck 00:52:46
Okay, that's perfect. One of the slides going through there was just talking about our ATTP program for allied health professionals, and I have a follow-up question to that, which we were just talking about, Dr. Foster.
About falls and the steps of dealing with it, one allied health professional in Tennessee is asking what your best single piece of advice might be for people who repeatedly fall in order to try to avoid falls. Can you do that? Is there a single piece?
Erin Foster 00:53:17
Oh man, again, it's hard because it can be so individualized. Gosh, I would say the dual tasking and thinking about those environmental changes that I listed on the environment slide, which I know is a number of different changes, but...
Dr. James Beck 00:53:45
It seems like the very practical one of just decluttering your house seems like a really inexpensive and simple fix to really help people navigate their environment all the time. Would you say that's kind of a good thing to do?
Erin Foster 00:54:00
Yeah, I would.
Dr. James Beck 00:54:02
Okay, perfect.
Erin Foster 00:54:03
Good answer.
Dr. James Beck 00:54:04
Thanks. I paid attention.
I want to tell our audience, we've got our survey for this Expert Briefing that's online now, and I encourage everyone to take it. This information we utilize to provide feedback to Dr. Foster, but also utilize to make certain that every year, our Expert Briefing series is the best it can be. I know for our tenth year next fall, it's going to be superb based upon the effort everyone has been putting into it to give us the feedback on direction and guidance.
Some more questions, Dr. Foster, and they relate around the bedroom. A purchase like a mattress is often an expensive purchase. A care partner in Rhode Island is asking about what kind of mattress to purchase. They want to buy one. Her husband has Parkinson's disease now, and it's not an issue because it's an early stage, but they want to anticipate his future needs. Specific type of mattress, I mean, should you stay away from foam mattresses or pillow top? What's your advice?
Erin Foster 00:55:05
Oh yeah, that's... I would say probably stay away from those memory foam mattresses and pillow tops. You want something that's high, but that's a little more firm, so it's easier to move around. Not only can getting in and out of bed become difficult, but moving around in bed can become difficult as people lose some of their mobility. Something that's on the firm side would be better for that.
Dr. James Beck 00:55:32
Okay, and then, there's in bed, but getting in and out of bed. We had some pictures of some of the equipment. Is there any in particular, I guess, to help people make that transfer? Is it familiar to you guys?
Erin Foster 00:55:50
Back through these slides, or?
Dr. James Beck 00:55:52
Yes, yeah, we can.
Erin Foster 00:55:54
Okay, something that I have found that has been particularly helpful for people with Parkinson's disease is on... oh, I just tried to click on it.
Dr. James Beck 00:56:08
Should be coming up, I think.
Erin Foster 00:56:09
Control. Okay. It's a bed, it's called a bed cane.
Dr. James Beck 00:56:13
Go to the right slide. There we go, perfect.
Erin Foster 00:56:16
Wait, I'm not seeing it. Okay, are we on it now?
Dr. James Beck 00:56:21
I don't see it yet. There's a slight delay, but we're getting there. There we go.
Erin Foster 00:56:24
Okay, it's called a bed cane. You can see that on the bottom center is one bed rail, but then the picture on the rightmost side, that's a bed cane. That is actually one of the most favorite devices that my clients with Parkinson's disease have used. It's a way to help you turn in bed, and then it can also be used to help you get in and out of bed.
Dr. James Beck 00:56:55
Oh, very interesting. I've seen some people talk about using that pole. There's a pole that goes right beside the bed. Is that useful too, or what is your experience with that?
Erin Foster 00:57:09
It is, yeah, so that's useful. The other longer sort of rail can be useful. There's also a strap that can hook down, and if you have a footboard at the foot of your bed, there's a strap that can go around that, and then you can just use it to pull yourself up from laying. All of these things can be useful. It's just a matter of finding what works the best for you.
Dr. James Beck 00:57:39
So it's a little bit of trial and error, then, on trying to do that.
Erin Foster 00:57:42
Yeah, it can be, or talking with somebody or figuring out what specifically you need this piece of equipment to do. It's not going to be practical for people to buy a bunch of devices and return them, although that is possible. You just kind of, that's again where understanding the problem comes in and really understanding what specifically your needs are in terms of function, as well as aesthetics, because that matters.
Dr. James Beck 00:58:11
Yeah, absolutely. I know that my in-laws have moved in with us, and we modified our bathroom for them and were able to get grab bars that look really nice, and not terribly expensive either. It doesn't all have to look like it's institutional.
Erin Foster 00:58:29
Mhm.
Dr. James Beck 00:58:30
Some more questions. For people who aren't yet having these problems, can they do this on a prophylactic or preventative basis to try to make certain they're ready for the next stage of their disease? I mean, do you have to have falls before you can start seeing an OT or PT?
Erin Foster 00:58:50
No, you can do it preventatively, and I encourage you to do so. I should have said that from the very beginning, but yeah, prevention is key. Many of the things that I talked about and just thinking about home safety and what's coming down the road can and should be implemented preventatively, because oftentimes it's harder to make these changes once you've had a problem.
You can see an OT. You can also see therapists preventatively, so you can start thinking about it on your own or seeing professionals, and they can help you better plan for the future.
I'll also say that some of these principles go along with the concept of universal design, and going back to our discussion about aesthetics and what you want your home to look like. Universal design is a way to make spaces more accessible for everyone. Something that might help you now, if you're worried about resale value or something like that, typically these changes are things that are seen as being good for any sort of person, so you don't have to necessarily worry about that.
Dr. James Beck 01:00:02
Okay, that's good to know. I want to give you some feedback since you're here, Dr. Foster. I know we're coming up towards the top of the hour. Excellent presentation, very resourceful. Thank you so much. Great presentation with so much information, from New York.
An allied health professional in Illinois said, very good presentation, it was person-centered, and they said they hope to incorporate the general problem-solving approach to falls as part of a patient education approach. They thank you so much for learning about that.
Two more questions, if I may, as we go through. What's the best way for, this is a person with Parkinson's in Arizona, who live in remote and rural areas. How are they able to live alone? What kind of, how do they find the resources that they need to do that?
Erin Foster 01:00:53
Right. I know it's harder to access lots of stuff in rural areas. There are OTs and PTs usually that can be accessed from any area. It might take longer to get somebody, but home health people can come out to your house. Again, lots of information and resources on the internet.
Telehealth or telerehab might be an option to pursue if you do have internet access so you can talk to people remotely. I know that there are some services, I don't remember the details of them, where you can actually take a camera around your home and show therapists what's going on, and they can help provide recommendations there.
But also, as I said, I truly believe that it's worth traveling to see somebody if needed to get some of this assistance, even just for one or two sessions. If you can find an OT or somebody that specializes in Parkinson's disease or home safety somewhere nearby that you can travel to them and see them and take pictures of your home and discuss your problems to get some of that input, I think that would be helpful.
Dr. James Beck 01:02:14
Okay. I just want to mention that our Expert Briefing series is going to start again in the fall, Tuesday, September 18, so mark your calendar. Same time and place, online and at 1 p.m. Eastern Time. I want to thank again our sponsors for this, AbbVie, Sunovion, and Lundbeck. They're helping to make this series possible. We're doing everything we can to use your feedback and the surveys that were on the screen to improve our webinars and what we're going to be doing next.
For those who want to remember this and were too busy trying to take notes or listen, we'll have an archive of this. It's going to be posted next week on Tuesday, June 12, at Parkinson.org. For people who have questions, of course, you can feel free to call our Helpline: 1-800-4PD-INFO. That's 1-800-4PD-INFO.
Dr. Foster, my final question for you, and this is from a person in California. We've talked about living alone and everything that you need to do to do that, but how do you decide when you're no longer able to live alone? What do you use to make that decision?
Erin Foster 01:03:25
Oh. Hmm, that's a good question. I think that if at any time you're starting to feel uncomfortable yourself about living alone, it's worth exploring other options and maybe talking to people to get an outside perspective. If there are home safety issues that are severe that don't seem like they can be rectified or mitigated to your satisfaction, that might also prompt you to consider seeking alternative living situations.
In general, if you just feel like you're ready to live somewhere else and not live alone anymore, there are a lot of great benefits of moving to assisted living facilities or long-term care facilities in terms of social interaction, things to do, people that are available to offer you assistance.
Again, I think it's highly individualized, but it's also worth seeking input and advice from your friends, your family, and also your physicians or other medical professionals about their perspective on where you should be living.
Dr. James Beck 01:04:52
Okay. With that, Dr. Erin Foster, thank you very much for your time today. It was a wonderful presentation.
Erin Foster 01:04:57
Well, thank you. My pleasure.
Dr. James Beck 01:04:59
Good. Thank you, and thank you all to our listeners. This concludes our ninth Expert Briefing series, and I look forward to talking to everyone again in the fall. Have a good summer.
