Adaptive Living Spaces and How They Improve Lives

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast.
So much of our world and society centers around an assumption that everyone walks or moves around the same way, but the reality is that our community is full of people at all ages that move and interact with the world in different ways. The American with Disabilities Act, or the ADA, has helped support adaptations to our sidewalks and other structures to make mobility easier for everyone, whether you have crutches, a wheelchair, or a stroller. Our guests today live with Parkinson's in their family and brought some of their experiences and these adaptive ideas to a space not addressed by the ADA, our homes. I hope you enjoy our conversation with Allen and Julie Patterson about their story and about how they're building and construction company teamed up with Southern Living to develop a design for adaptive living while also benefiting the Parkinson's Foundation. Following that discussion, make sure you catch our conversation with neurologist, Dr. Glenn Seliger, and occupational therapist, Beth Russo, to learn about adaptive housing and rehab therapies for all kinds of mobility issues.
And upcoming on May 4th, check out our episode with Kitty Isley who shares her story about caregiving for her father with dementia, and we talk about her podcast, Twenty-Four Seven: A podcast about caregiving. May 11th, catch us for a recap and some neurology news about everything that happened at the latest American Academy of Neurology annual meeting where we bring together neurologists from around the world. We'll talk about some of the latest research and different neurology news that presented and what happened, really what matters to you in the community. Thank you so much for listening, and I hope you enjoy this episode.
Welcome back to the Brain & Life podcast. Today, I'm joined by Allen and Julie Patterson, straight from South Carolina. Allen helped the Southern Living Magazine put together the idea of adaptive housing for living with various conditions, but particularly Parkinson's disease. I'm glad that they're both here to join us and to share their experience with Parkinson's Disease and thinking about adaptive housing for everyone. Thank you and welcome, Allen and Julie.

Julie Patterson:
Thank you for having us.

Dr. Correa:
So Allen and Julie, what's your family's history and experience with Parkinson's disease and other neurologic conditions that started to draw your interest into this idea of adaptive housing?

Julie Patterson:
Personally, there was no Parkinson's in my family. My father and my sister both died from cancer. My mother had Alzheimer's. So those were both always on my radar. I was always reading about preventing Alzheimer's or cancer, and then out of the blue got the diagnosis with Parkinson's.

Dr. Correa:
And so what was it that you started to notice made that and those symptoms and made you more aware?

Julie Patterson:
I was training for a half marathon. And while I was running, toes would curl up. And I thought I'm dehydrated, I'm not stretching enough, things like that, but it just continued. And a couple of times when I ran, my hand just started shaking while I was running. And I ran with my daughter and she said, "Mom, you're not swinging your right arm." And I'm like, "Ah, it's just because I'm got my activity tracker on my left arm, so I exaggerate the movement of my left arm," but I knew something was up. And took several trips to our local family doctor, and then he sent me to a neurologist.

Dr. Correa:
That sounds like you have a very perceptive daughter. Some of those are very typical symptoms that you describe, and as she noticed, that people might start to notice. And many people, I think at the beginning, start to hope that, oh, maybe just a small adjustment or with some time, maybe something like dehydration, especially when you're thinking about marathon running.

Julie Patterson:
Yes.

Dr. Correa:
And Allen, did you have any experience before you got involved in the idea of adaptive housing with other neurologic conditions or Parkinson's?

Allen Patterson:
I've been building 45 years. And so as baby boomers started aging up, we started having to make special concessions when we built houses, bigger doors, hallways, and grab bars. And a lot of things that they started needing, some of them were driven by neurological problems, but a lot of them are just people getting old, not wanting to climb up steps and wanting to live on one level. And then a seat in the shower. We started putting barrier free showers in back in 2008 or something, but it's because our clients thought it was a good idea.
And a lot of the things we incorporated in our designs and our buildings were really made for people that were just aging out a little bit, aged in place, but some of them had neurological problems with ramps and doorways. And so we started incorporating those in. Because I'm getting old too. I thought if I like it, they'll like it. And it's been a big draw. And surprisingly, it's helped us market our products and our type of design. The Parkinson thing was just a huge thing that Julie will explain a little bit about how we got involved in it. I always felt like I needed to give back to the community and do something to help or make a difference. But when we built houses, we've done a lot of it, and just kept adding one thing after another. And a lot of it has been applicable to people with neurological problems.

Dr. Correa:
So Allen, you brought up a few adaptations that someone might do you explore as a builder for someone with aspects like their bathroom or otherwise. But as you've been able to start to put these things together, what do you think of, or how do you describe for people, what is adaptive housing?

Allen Patterson:
Well, adaptive housing is where we eliminate barriers to mobility. And particularly with Parkinson's and other things, sometimes people are in wheelchairs. And with Parkinson's, people, they tend to trip and drag a foot or something. So we try to eliminate those barriers to mobility, a ramp or grab bars, thresholds that are barrier free that make a smooth transition, don't represent a trip hazard. The showers are really good in that we've made then big enough where you can get a wheelchair in there, and a seat. Always want a seat. If I'm trying to wash my feet, I really want to sit down. And I can't Just imagine if you got balance or mobility issues, it's even more important. And I like comfort toilets, a little higher, easier to get around. Adaptive housing's worked for people instead of the other way around. I try to figure out what's easiest for those people, doorways that are a little wider, hallways that are wide enough for wheelchairs and stuff.
I've worked with the design firm, Eric Moser and them, and they actually designed this cottage. And we sat down and they had some good ideas about how to make it more accessible to people. And a lot of what we do is perfect for people with neurological things. What's really exciting nowadays is the smart homes and appliances where you just walk in and say turn on the lights. And even the appliances, GE and some other companies have started doing that, where you can turn on stoves. And with the advent of iPhones and Siri and all that, it's really been helpful to get commands so you're not wandering all over the place, you got the lights that you need. And we've done a lot of those type of products.

Dr. Correa:
It sound like there's some helpful adaptations that people can think about across various rooms of their house. We use all the different spaces, so differently. It sounds like a lot of that seemed to come together in the Southern Living Adaptive Cottage Project. How did that come to happen?

Julie Patterson:
We did a house for Southern Living that was like an idea house, and it was around Christmas when it was going to be on tour. And we partnered with a local hospice company that normally had a huge event at Christmas to raise money. And this was 2020, during COVID, so they couldn't have their huge fundraising event. So we adapted their project and made a tour where people could tour the house we decorated first as a design idea for a normal house, and then during December, it was decorated for Christmas. And the neighborhood had people buy trees and decorate for Christmas, and people could buy tickets and tour at the cottage that we had and tour the neighborhood to see how the neighbors had decorated their porches and their trees. So it was COVID friendly and raised money during COVID, which was not an easy time to do that. And my friend Scott Rider, who was a Parkinson's advocate extraordinaire, came to me and said, "I got an idea. Why can't we build a house and raise money for the Parkinson's Foundation, and it could be adaptive for people with Parkinson's or any other issues?"

Dr. Correa:
So that was working with the local Parkinson's Foundation or the national organization?

Julie Patterson:
The national. He's on the board for the Carolina chapter of the Parkinson's Foundation.

Dr. Correa:
And so then how did the cottage and some of what you guys worked on, and the plans and as the builders, how does that go back to support and the Parkinson's Foundation?

Julie Patterson:
The plans that Eric Moser drew our for sale at Southern Living's website, and a portion of the sales go to Parkinson's Foundation. And we raise money from the sale of the house, and vendors and subcontractors donating items, and the developer donated part of the lot. And we had a big party after it was over to celebrate the house, which was a huge neighborhood event.

Allen Patterson:
What I thought was important, we raised about $200,000 in total for Parkinson's, but it really brought the awareness of the disease into the community. And there were a lot of people that had it who were just being quiet about it in the neighborhood. They all came out together, and a lot of interaction between them. And even some of my clients I was building for had it but didn't tell me. So I really think, besides donating the money, trying to help people live with this neurological disease, we also made awareness of it and tried to promote it and give a little better understanding and more support in the community. And through Southern Living, it gets out to 20 million people. Somebody want to help out of that, we think it's very important that we get that awareness in the community, and nationally, that this is a problem.

Dr. Correa:
It's great to have more of this conversation about these adaptations, as you said, increasing awareness but also decreasing the stigma. So many people, there is this fear and stigma of when they might need a shower chair or a bar incorporated in the house. And so I'm interested, Julie, as you and Scott had conversations with the developers and Allen and other people, what were some adaptations that you think that were unique or specific to Parkinson's patients moving slower or having more difficulty, or some of the dyskinesias that led to interesting or new adaptations that were incorporated into the house?

Julie Patterson:
We used faucets that were hands free so you didn't have to worry about grabbing if you have dexterity issues. There were rugs. We tried to keep them, not trip hazards, had them taped down, and similar colors so that they weren't a big visually difference. That's a problem for some people, where the color, I've read, where it looks like a hole with a dark rug in the middle of a light floor. We had the pot filler at the stove so you didn't have to worry about carrying water from the sink to the stove. There was a water bottle filler and a dog bowl filler for pets built into the wall. That was a donation.

Dr. Correa:
Not everyone has the opportunity, of course, to build a whole home or use plans to start from the scratch, but it sounds like many of the things that you've described are some projects that someone who's handy could kind of approach as a small installation or an adaptation into their house. Allen, in your experience, what would be some of the top things that you would suggest to someone that they consider if they're looking at doing some, you know, DIY adaptations to their own home to plan for a future of hopefully aging at home?

Allen Patterson:
Well, the grab bars, the seat and the shower with some grab bars, and the higher comfort height toilets with the grab bar if you need it. You can put a ramp in. People will get in car wrecks or have something happen. And one guy wrecked his bicycle, and we put a ramp in. Those are some pretty big additions you could do. The lighting is important. You can just buy a regular bulb and it'll be smart. It'll turn on for you. I like that. The door levers, the handle sets being levers instead of a knob. But then in the closets and things, we've got pull down shelves that you could just adapt to what you have. And in the kitchen too where you might want to pull a shelf down with spices from up above. It's just a bar. It's something you could rig into cabinets or into your closets. And again, the hands free motion activated sink valves and laboratory valves. And those are some of the things that I think you could take an older home and adapt and add to. Eliminate trip hazards and stuff is another thing we do.

Dr. Correa:
And that would seem so important since falls is a major complication of many conditions that affect people's ability to get around, including Parkinson's. And Julie, your experience working with other people, living with Parkinson's and differently abled persons, are there some misconceptions that I think you and people may have about living with these conditions, or aging that have been dispelled through working with this project and with Parkinson's Foundation?

Julie Patterson:
It really irritates me when people think I can't do something because I have Parkinson's, I exercise a lot and go to the gym to help prevent it from progressing. And I really don't like it when people think people with a disability can't do things that they can and want to do, and aren't ready to give up on their independence quite yet.

Dr. Correa:
Yeah. And for you, Allen, having worked with so many different clients, are there different misconceptions that you have had dispelled throughout this process?

Allen Patterson:
Well, with the clients, I've tried to say, "Hey, we can do this." I've tried to be positive about it. When I build a house or I go around the tour homes, I always think about, well, what's easier here? How do I like that? I don't have major mobility issues, but I am very cognizant of where I put my feet and to make sure I have a good stance, because I have fallen, particularly in the construction business. So I try to help people point out these issues and say, "Hey, look, we got a barrier free shower. You can get it here. This is all good." Just try to help the people understand that we can accommodate and avoid some of these barriers they may think are insurmountable.

Dr. Correa:
Working with people at different stages of their aging or living with various conditions like Parkinson's, how has that changed the family's conversation between you or with the rest of your family about looking forward and aging in place and aging well together?

Allen Patterson:
Well, one thing we haven't touched on that really might address that issue is, particularly the Parkinson's house, we put another place where a caregiver could stay. See, you can live in this part of the house, and then you can bring in the person you're going to take care of and they can live right there with you, their own master bedroom, own closet, own bed. They're just down the hallway or something. And that's part of what Moser and I really... I thought was an innovative thing that they can be right there with you. And that's real important, to have that sort of support emotionally, and to be there physically if you need them. And we've done some of that. I think that's really one of the best things. You want to keep that family unit together. You want to keep that support in place. And that just makes life so much better, and their quality of life is so much better when they got family around.

Julie Patterson:
I was going to say, I think a big feature of the adaptive cottage is that when you look at the pictures in the magazine, it just looks like a beautiful, well decorated house that you'd love to live in. It's not glaring that this is an adaptive cottage. It's beautiful features that are very functional. That's the way it should be.

Dr. Correa:
Yeah, no, I agree. It's beautiful pictures, and sometimes you have to almost take a look and try to find, oh, I see how that is a change and accessibility to the sink and accessibility to getting around the rooms and the fact that there's less barriers between rooms.

Julie Patterson:
It can be subtle, but it makes a huge difference.

Dr. Correa:
Well, thank you both for joining us and for taking the time to share your experience, your story, and your ideas with our listeners at the Brain & Life podcast.

Allen Patterson:
All right. Thank you.

Julie Patterson:
Thank you for having us.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.
Welcome back to the Brain & Life podcast. I'm joined now by Dr. Glenn Seliger and Ms. Beth Russo. They both work at the Helen Hayes Rehabilitation Hospital. Dr. Seliger is a neurologist and neurologic rehabilitation expert, and he's the director of their Traumatic Brain Injury Rehab Services program, and Ms. Beth Russo works as the occupational therapist in the Helen Hayes Hospital's Outpatient Parkinson's Program. They're both here to help us get some extra context on what we started in our discussion with the Pattersons and Adaptive Housing. Thank you so much for joining us today.

Beth Russo:
Thank you for having us.

Dr. Glenn Seliger:
Thank you..

Dr. Correa:
Dr. Seliger, can you help some of us understand a little bit, what's the difference between neurologist, PMNR or physiatrist, the physical therapist, occupational therapist? There's a big team that some people might encounter in rehabilitation services.

Dr. Glenn Seliger:
Well, as it relates to Parkinson's, neurologist and physiatrists could overlap quite a bit, depending on their exact expertise and experience. But in general, the neurologist's role is going to be, one is help with the diagnosis and understand exactly what Parkinson's syndrome we're dealing with. If it's Parkinson's disease or a Parkinson's-like syndrome, give some overall message to both the patient and the team of what the likely natural history of the process is going to be, what medications might be helpful for that, and some, although that would be much more of the therapy team, but where this might fit in for therapy. Which particular areas appear to be particularly involved at this moment? The physiatrist might do something similar, except would probably be less likely to be involved in these specific diagnoses. And then depending on experience, probably wouldn't be changing medications very much for a Parkinson's patient. Sometimes the neurologist, sometimes the physiatrist, depending on the setup, might be the direct contact with the therapy team.

Dr. Correa:
And Beth, what's the difference between physical therapists and occupational therapists, both in the hospital and then as people continue their therapy in the outpatient side?

Beth Russo:
The difference between occupational therapy and physical therapy, in particular for Parkinson's, is really a team approach. We recommend that they both work together. Physical therapy is going to look more at their gait, their balance, their functional mobility. Occupational therapy is going to be looking at their activities of daily living, their functional status in and out of the home, their cognition, as well as their visual perceptual, more the non-motor symptoms for Parkinson's. For Parkinson's in general, there's a very large movement right now of therapy, so physical therapy and occupational therapy, and speech therapy as a team, trying to build this cohesive environment from inpatient and outpatient settings to make the patient as functional as possible in and out of the home.

Dr. Correa:
What are some of the differences in the programs and rehab that you offer between Parkinson's and some of the other movement disorders or neurodegenerative disorders

Beth Russo:
Here at Helen Hayes, the outpatient Parkinson's program was started by myself and my partner, Sandy Fini back in 2013. We modeled it based on various different places, including the rehabilitation of Chicago. We wanted to make a cohesive team approach, which we basically got certifications in allied team training for Parkinson's, Parkinson's wellness recovery certifications, and LSVT certifications for the OTs, PTs, and speech. So we have a team of about eight therapists that look at all movement disorders, not just Parkinson's, so the atypical Parkinson's or any of the other movement disorders. So our education and our background has become more specialized based on all the resources out there, and the evidence-based practice that we have right now on Parkinson's and movement disorders. We also have a wellness program now and a support group for Parkinson's disease here at Helen Hayes that's now reopened since COVID. So that is good news.

Dr. Correa:
Glad to hear that things are getting back and closer to our normal from before. Now, do you also focus a lot on the services and support of the caregivers and the family members of people with Parkinson's?

Beth Russo:
Absolutely. It's a must. The support of the care partners, we have them in for training very often. If they're not able to come in person, we'll try to do telehealth or FaceTime as much as possible because it is a team approach. The family members, the care partners, everybody.

Dr. Correa:
And eventually, of course, we want everyone to be back home in their spaces and functioning as well as possible. Do you each have suggestive activities and exercises that you talk with people living with Parkinson's to help them manage their movement disorder symptoms?

Beth Russo:
So obviously, I'm biased so I would want them to have therapy first, but we encourage exercise as medicine, so as much exercise that they can fit into their day. Aerobic exercise is huge in evidence-based practice right now to help the brain in so many conditions. So for movement disorders specifically, we're looking at intensive exercise. And there's so many things in social media and online now that they can even do it in their own home safely, or they can find places around them in the community that provide wellness programs. Fortunately now, I think post COVID, there's a lot more Zoom and online center and forums for exercise. So we really, really push that. And also, we want them to do cognitive exercises as well, because as we know, Parkinson's disease affects not only your motor symptoms but also your non-motor symptoms.

Dr. Correa:
And Dr. Seliger, in the past interviews that we've had with people living with Parkinson's disease, Jimmy Choy and Brian Grant, they talked about the challenges of on and off time with their activities. How do you approach the treatment and on time to facilitate someone having better mobility for those activities and exercises?

Dr. Glenn Seliger:
Well, I would say a couple of things. First of all, participating in a program like we have will hopefully help contributing to decrease some of the off times by being in better fit shape, will help learning some of the tricks and things to help get moving when you're off compared to are quite helpful. And probably also in the social groups when they talk, they probably also give each other ideas about what to do. Some people also find that modifying their diet can be helpful, protein intake at certain times for decreasing off periods. But that's a very individual thing. I don't think you can make a global suggestion. In other words, not eating this or not eating that at some time, but some patients do find that helpful for minimizing their off times.
And then of course, the patients are often their best judge of when they need a little extra boost from their medication. So you need to give them the flexibility to have some control over it. You need to be careful that they're not overdoing it with their medication. But I think one of the reasons Parkinson's patients have such difficulty when they come in the hospital is that they lose some of that control that they have at home. Hospital routines just don't fit for a patient saying, "I need a little extra now."

Dr. Correa:
No, that's true. It's an unfortunate reality of just being in hospital care. Sometimes it's just that much different from their own rhythm. And you mentioned some suggestions that you have for people in reducing their off time. Is there one of those that you think is kind of broadly applicable that people can consider and think about?

Dr. Glenn Seliger:
I do mostly TBI, but I have several Parkinson's patients in the outpatient. Some of them find, at least they tell me that they find that decreasing their protein intake at certain times is helpful for them, and they notice a difference and that decreases their times off. But I think for me, at least what they're going to most likely volunteer to me, the therapy team will probably be something different. But to me, they'll volunteer when they want a little bit of extra medication.

Beth Russo:
I would agree. From the therapy perspective, sometimes we'll even have patients, if the off time is really inhibiting their function at home, we'll have them fill out logs of on and off times, and then they can then go to their doctor and say, "These are the hours that my off times aren't impacting me. What can I do about it?" So that way, the doctor has a concrete explanation of what's happening to them and their hours, and then we see most of the neurologist will adjust their meds accordingly.

Dr. Correa:
That's a great context, the diary or log of how the times of days when they take their medicines and their symptoms. And Beth, you mentioned some cognitive activities that you suggest to the community that you care for. Is there one of those that you would suggest that we all think about for our own brain health and cognition?

Beth Russo:
So lots of times, if they are computer savvy, we will suggest the standard Lumosity, Brain HQ, Sporkle, things like that. Some you have to pay for, some not. Other things if they do have apps on their phones, any word games, any word retrieval games, letter cancellation games, anything like that. And then if they are able to do aerobic exercise, sometimes I'll have them pedal on their recumbent bike at home at the same time that they're doing a crossword puzzle, and they have to keep up the speed at the same time as they're trying to challenge their brain. Dual tasking is very big in evidence-based practice right now.

Dr. Glenn Seliger:
I would add one medication thing that I think is sometimes overlooked that we don't always have control over it, because sometimes the Parkinson's patients are under other people's care. But Beth mentioned the cognitive component, and also the falling risk. And there's actually some literature about decreasing fall risk in Parkinson's patients. And that's not broadly known, but it is published in the literature and mentioned in a lot of the rehab texts

Dr. Correa:
We were talking previously with the Pattersons about home adaptations. We want everyone to be able to move forward and age in place in their homes and with their families. How can adaptations in the spaces they live in and visit with their family help with that?

Beth Russo:
First of all, I loved the adaptive cottage. I wish everybody could have something like that. In the Hudson Valley, I think the limitation we get is there is a ton of split level and bi-level housing here. So stairs is a huge ordeal to get accessible, but we want to try, as much as possible, simple things to removing rugs. Open space is huge. Removing clutter as much as possible. I think he used pocket doors in his cottage. That's also super helpful. If you're not able to do a pocket door in your renovation, then you can also do a barn door. Also creating an open space. Many times individuals with Parkinson's have freezing of gate, and also fall risk. So doorways are a big problem. Stairways are a big problem. So oftentimes, the therapist will problem solve different ways to kind of counteract some of those things that are increasing their freezing of gate in the house. We also recommend maintaining the same flooring throughout the entire house so that visually, they're not seeing different patterns that might trip them up, impair their ability.

Dr. Glenn Seliger:
And often when that happens is there's like a little... I forget what it's called, but there's a little bump as you go from one flooring to another, and that's often devastating for Parkinson's patients.

Beth Russo:
So lots of times, we'll try either taking the saddle out, but also they're redoing their bathroom per se, we'll have it as uniform as possible, so that if they're further along in the disease process and they have more visual perceptual impairments and cognitive impairments, it's helpful to eliminate anything that's going to impair their ability to see the right thing, depth perception and so on.

Dr. Correa:
And you described also how in certain communities like the Hudson Valley, or maybe even in cities like in New York City, people don't have as much flexibility as others might have, either in building a home, or even financially. What are some simple modifications or adaptations that someone could do, whether it's living with Parkinson's or maybe even in recovery after a more moderate or severe traumatic brain injury?

Beth Russo:
I think less is more. Even if they have an apartment and it has a four story walkup, making sure there's two railings. If they rent, they can ask the landlord to install a second railing. On the actual apartment or the house, eliminating rugs altogether, maybe even eliminating some furniture, opening space as much as possible. That's probably the cheapest ideas. Other little things are in the kitchen, thinking about adaptations of simple, like opening the fridge, opening containers, things like that, keeping it simple.

Dr. Correa:
And so you've both been working with a wide variety of people living with different neurologic conditions and within neuro rehab, I'm wondering in your experience, how has neurologic disorders touched each of your lives, and how has your experience working at Helen Hayes with the community helped you approach those challenges with a family member?

Beth Russo:
Seeing the community I work with now has urged me to get more educated in resources, more education in even the evidence-based out there, and in my own life, just trying to be supportive. Neuro is not easy and it's constantly changing. To see family members dealing with individuals that have neurological conditions is... They need a person that can just listen, add support, add resources if possible, add suggestions that are helpful, even in adaptations, modifications in their lives, advocating for doctors, movement disorder specialists, anything like that to try to help. So I think it's given me insight and education as well.

Dr. Glenn Seliger:
Yeah. I think that one of the bigger problems in TBI, but also in Parkinson's, is that there are tremendous behavioral stresses on the family as a whole, both on the patient and the family. And over the long haul, that can really take its toll on the family. And while we've become more aware of the resources, they're actually relatively limited in the community. It's difficult to get a therapist who's familiar with the problem, and then coverage for them to see the person often enough to be helpful and do interventions.

Beth Russo:
Agreed. I would also add, even the caregiving support, sometimes even from a financial perspective, the resources aren't out there for cost effective caregiving, and cost effective wellness programs as well. So I think that's a constant struggle.

Dr. Correa:
Yeah. Is there something that either of you have helped or found that it can help families that are exploring those difficulties of cost and socioeconomic challenges of helping care for their family member?

Dr. Glenn Seliger:
Often for head injury, there's services available through the Medicaid waiver that might not be available to Parkinson's patients. But even within the Medicaid system, there are services available that private insurance doesn't pay. The problem is families really need to plan for that to become eligible, and they need to plan for it years in advance now. And probably, that's something in head entry, we talk about. And I'm sure on Parkinson's, if you're 75 years old and you have middle stage Parkinson's disease, chances are you're going to need more help when you're 80, and it might be a good idea to plan for that

Beth Russo:
If it's not possible, and we have the 75 year olds that either is alone and doesn't have the family members to help, I've even given resources of church communities or the Office of Aging Resources. Or even the Alzheimer's Association, anybody can go to them that has any cognitive impairments, and occasionally they'll give additional resources for respite care or anything like that. But caregiving is tough. Even colleges putting up on care.com or putting up on social media, the need for college students to come help because that'll be a little bit cheaper, as opposed to the caregiving agencies out there.

Dr. Correa:
Those are all great potential opportunities for people to take a look at in the challenge and the struggle. And we were talking some about those care partners and those family members and the potential burden and challenges that they may encounter. Do you guys either have suggestions for those care partners and family members who have a family member living with Parkinson's or even traumatic brain injury as they prepare themselves for everything, they're going to be there and supporting their family member?

Dr. Glenn Seliger:
I think that they need, first, education to try to understand what they're in for, although I don't think anybody ever really understands what they're in for. And then, it can be helpful to have a support professional in the community. And again, that's often insurance dependent. Sometimes people have connections to church and other supports to give them support as caregivers, but it's actually probably in some ways more difficult than getting help for the patient.

Beth Russo:
Find support groups. Parkinson's Foundation, and I believe the Davis Phinney Foundation both have online forums that can provide you with support groups in your area. That's also a good resource. Now with social media, I'm finding more and more online forums that you could just post something on there and say, "What do I do with this problem? What do I do if my husband fell last week and I have no support?" et cetera, et cetera. So now, we have this trend for the social media and the online forums. But unfortunately, if they're 70 and older, they might not have that ability.

Dr. Correa:
Yeah, it's an unfortunate reality. We talk often sometimes about how common or how significant the burden of various neurologic conditions are in our community, but then we forget that every single one of those people has a care partner and multiple family members, so the scope and the impact is much larger. Well, Beth and Glenn, thank you so much both for taking time with us and for all that you do to help support the community you're caring for with Parkinson's and TBI, and through some of the most challenging time points in their life, going from hospital into rehabilitation, and then making that transition back home.

Beth Russo:
Thank you for having me.

Dr. Glenn Seliger:
Thank you.

Dr. Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life magazine for free at brainandlife.org and even get the EspaÃ±ol version. For each episode, you can find out how to connect with our team and our guests, along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in by email to blpodcast@brainandlife.org, and leave us a message at (612) 928-6206. You can also follow the Brain and Life Magazine and me on any of your preferred social media channels.
These episodes would not be possible without the Brain & Life podcast team, including Andrea Weiss, executive editor for education and news publications, Nicole Lussier, our public engagement program manager, Rachel Coleman, our public engagement coordinator, and Twin Cities Sound, our audio editing partner. I'm your host, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea. Most importantly, thanks to our community members that trust us with their health and everyone living with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day. Before you start the next episode, we would appreciate it if you could give us five stars and leave a review. This helps others find The Brain & Life podcast. See you next week.

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