[Webinar Recording] Aging in Place with Parkinson’s with Carol Chiang, OT

Aging-in-place

In this interview, Carol Chiang discusses how an occupational therapist (OT) can help with activities of daily living and how home adaptations can help you live well with Parkinson’s today and into the future.

You can read the transcript below or you can download it here. 

This is not a flawless, word-for-word transcript, but it’s close. 

Melani Dizon (Director of Education and Content, Davis Phinney Foundation):

Hello, my name is Melani Dizon. I'm the Director of Education and Content at the Davis Phinney Foundation, and I'm excited to be here today to talk about occupational therapy. And I'm here with Carol Chiang. How are you doing?

Carol Chiang (OTR/L, CAPS, ECHM, CHAMP):

Hey, I'm good. Thanks. Melani Dizon:

Glad, glad that we made it today to talk about this very important topic. I'd love for you to just introduce yourself and tell people, you know, who you are, what evolving homes are, and how you got into this work, especially with people with Parkinson's.

Carol Chiang:

Yeah, absolutely. So, I'm an occupational therapist and I got into the Parkinson's space because my father-in-law has Parkinson's. And what's really interesting, kind of funny small world story is that Melanie Lao is a PT that I went to school with at McGill 25 years ago. So, she was an athlete, she was a runner. I was a swimmer. Our coaches had rooms next to each other, or offices next to each other. She used to come and train with us whenever had shin splints or some injury. So that's how I got to know her so fast. Kind of fast-forward 15, 20 years, and she happens to be in Florida. She's a mentor for one of my PT partners. And when I was on maternity leave, happened to sit at my desk and notice that I was there.

So, we kind of made contact, and that's how I discovered that she became a Parkinson's specialist. And probably about a year after my father-in-law had a fall and he was diagnosed with Parkinson's. Well, guess what? there's a specialist an hour away from me. So, we made an appointment, went down to St. Augustine, did the evaluation, and I was so amazed at all the cool stuff that they were doing because my experience, my background is in home health and, you know, we do a lot of stuff in the home. I mean, I'm able to help a lot of people with ortho injuries, but Parkinson's is a tough one. I mean, we can teach, you know, strategies on how to get dressed and how to do things, but because it's so progressive, we just really couldn't get a lot of longstanding progress in there. And it's really frustrating.

It's really frustrating for somebody like me that really wants to solve things, and get it done. So, when I was with Melanie, she was telling me about how exercises, and medicine is a huge push towards, you know, helping people with park, with people with Parkinson's live better quality of lives. And I saw it firsthand and seriously, we, I think I brought them there in October, and I think I got certified by end of November, December. I mean, I was, I was on board in love with, with power. It was amazing. Oh, wow. So, yep. So that's how I got into, that's how I became a Parkinson's Wellness recovery therapist. And then kind of maybe about a year later, I started my own business because, with Medicare cuts and everything, we weren't getting time to spend with the clients anymore. It was very, very limited.

And I wanted to be able to offer the ability to do fall prevention home safety consulting for these clients and other clients, of course. So, my specialty is aging in place and that's what I, what my business does is essentially do help homeowners figure out what that plan is for them to age in place and in a big comprehensive way. So not just grab bars on the wall, but looking at what does the caregiver need. Do you have physical fitness in your life? What are your lifestyle habits? If you know, if you stay up late and you miss those meds all the time, you're going to be in the hospital all the time. So that's not aging in place either, right? And these days people mostly live alone away from their families. So, you can't have these little islands where, you know, somebody's not checking on you every day, or at the very least that you can't reach out for help. So, we talk a lot about the idea of remote monitoring and, you know, just feeling connected to your community and the outside world.

Melani Dizon:

Yeah. Oh, that's so great. I love it. And, I don't know, I love the term aging in place. I don't know why, but it just feels like, oh, yes, I don't know. It feels like optimistic and not like giving up freedoms and thinking like, just because I'm getting old, I have to like, give up everything in my home and the things that I've come to feel Yeah. You know, that are part of me. So, let’s go back a little bit. Can you tell me exactly what is occupational therapy?

Carol Chiang:

So, occupational therapy is the job of life. So basically, we try to look at what is it that you need to do in order to be independent? And when I explain it to people, I try to break it up into two parts. So essentially there's activities of daily living, which is bathing, grooming, dressing. So, you know, if you can't leave the house, you know, if when you go to outpatient, you can't go there naked, and you can't go there without a shower. So, all the things that you would require to leave your house are generally in that category. And then we have something called instrumental activities of daily living. That is things like cooking, cleaning, laundry, finances, you know, managing your household. So, things that we can give to a caregiver. But if you live alone, you probably will need to be able to manage these on your own. So, we basically, OT is, how can I be independent by taking care of myself?

Melani Dizon:

Awesome. I think that somewhere, well, at the very beginning they just poorly named it because I think always confusing to people, occupational therapy why would I need that?

Carol Chiang:

And every conversation I had when I did home health was, but I'm retired. I don't need a job.. Melani Dizon:

Right, right. Okay. So, you touched on a little bit, but let’s talk about how somebody with Parkinson's, even from very, very early on in the diagnosis, why could they benefit from working with an occupational therapist?

Carol Chiang:

Well, most important is what we just talked about, which is exercise is the only thing that slows the progression of Parkinson's. So essentially, the earlier you start, the better off you're going to be. And you know, you want information. This is a progressive disease. And so, planning ahead is something that's going to give you the more, the most options possible. Unfortunately, a lot of people don't come to OT until after their first fall. And I think a lot of times that is, you know, it's not, I'm, I'm not going to say it's too late, but I'm saying that we want to prevent falls because the minute that you have your first fall, your chances of having a second are already 50%. And I think the more detrimental part of the fall is actually the emotional part. It's suddenly not trusting yourself anymore and having a fear of falling.

You're taking smaller steps; you're being more cautious. And, you know, paradoxically, that is actually what leads to more falls. So, if we're trying to, if our primary purpose is to avoid having, you know, a decline in function with Parkinson's, you need to be, you know, five or 10 steps before that fall. Yeah. Don't even go down that road. Right. Just catch as soon as possible. And even then it's, we really want to be teaching people about prevention. What can I do? Be active, engaged in, you know, what you can do to, you know, live a really good quality life.

Melani Dizon:

Yeah. It's interesting. I was talking to somebody with Parkinson’s, and she had been diagnosed young onset, she was I think in her early forties, and she got a diagnosis, literally left the office. And there was, it was a center of excellence, so there was an OT and a PT and stuff. She happened to run into the OT on her way out. And she had just been like, oh my gosh, I just got this diagnosis, what in the world? And serendipitously she ran into this occupational therapist. And from day one, that was her person. And so, she, you know, she was really fine except for a tiny little shake, you know, a couple of little things. Yeah. And she worked on walking, she worked on hand exercise, she worked on all of these things that, like you said, you get steps ahead and then you kind of build that reserve, right. Which is really important, so that when it comes down to down the road you might have built the strength or have the walking strategy to not fall. Right.

Carol Chiang:

And I want to take that one step further because you're still, you know, you're still addressing the physical part in this. And, you know, OT is very holistic. We're looking at what's important to you. I mean, we all live and breathe, but not just to live and breathe. We live and breathe because we love, we want to hang with our families, and we want to enjoy hobbies that we love. We want to get out in the world and do good, do community service. Right? So those are all things that require breaking down the steps as to what you're going to do. So, let's say, for example, you know, somebody with an early diagnosis says, you know what? I love dancing. I mean, I can't live without dancing. I might, you might as well just put me, you know, somewhere if I can't do that. Right? So, starting from the beginning to say, okay, what are we going to do to make sure that that is something that continues through your life is, it's an important part of starting to plan.

You plan from day one about where that's going to go. But also, if you're brave, you can also talk about, well, what happens if X, y, and Z tremor, or I start tripping, or like, what are my choices? So, you have time for that to marinate in your head and, and say, okay, well if this happens, we're going to do this, so don't worry. Right? It decreases stress. It's not black or white, it's not all or nothing. There are lots and lots and lots of steps in there. And I think that people are a little bit scared of opening that door because if they feel like if I open that door, that means that it might happen. It's going to happen. And, and it's so interesting because I have an elder care attorney, a really good friend, and she says that's the reason why people don't make wills.

Because they feel like if they make a will, it means they're going to die. But the opposite is, you know, the problem is, is that the consequences are significant. If you just avoid it thinking it's going to, you're going to make it happen, then you're putting yourself in a really difficult position so that when you actually do need it, you're, you're, it's an emergency, you're struggling, you're doing, you know, you're just cobbling together the best that you can do given the timeframe. Versus if you were brave and said, okay, it's not going to happen. I'm going to, the Parkinson's is not going to kill me, that people do not die at Parkinson's. They die of things related to Parkinson's, like falls and aspiration and other things. Okay? So, if we can just take a deep breath and say, let’s figure it out and together, you know, the support of my family, who can do what, what can, who can get this organized for me, I think that there would be a lot less stress going down that path.

Because you have already, you're spreading that out through, who knows, 20, 30, 40 years of the disease progress. So, it's not overwhelming. And, and that, I want to just segue into the, to say that that's what happens with home mods too. That when people try to do everything, they leave everything till their sixties, seventies, that's a tough thing to do because that's a lot of money, a lot of stress, a lot of thing decisions to be made. Whereas I really try to advocate that as soon as you buy your first house is when you should, should be starting to think about those things. So, every single remodel that I have, I'm, you know, making those changes. Even if I don't age in this house, even if I decide that I sell it later, somebody else is going to appreciate having level floors, wider doorways, microwaves underneath, like the bottom cabinets. And this is a continu-, life continuum thing. It's not just an aging in place thing. It is considering that my toddlers when they were little were able to access the microwave because it's at their level, right?

Melani Dizon:

Right. The fridge.

Carol Chiang:

Right. My fridge having, like, a freezer and a fridge component at a lower level meant that my kids could do their independent activities on their own, which teaches them life skills, which then decreases my burden, right? So, it is something that is smart for every age group and not just an aging age group. So, I really want to just say that forget about the idea that there's no stigma attached to this. It's just living easier, better, and smarter.

Melani Dizon:

Yeah. Oh, I love that. And I think also one of the consequences of planning ahead is I think there's something really cool about saying, what do I value? What do I care about so much? And a lot of people don't stop to do that anyway. Right? But if you're somebody that says, well, this is really important to me and I want to make sure I can do it, come hell or high water. Yeah. You know, that's such a cool thing to align, identify your values and align your life with those to make sure that they can happen Parkinson's are no Parkinson's, right?

Carol Chiang:

Yeah, it's a great catalyst to stop and stop the crazy busyness of your life, get off that rat race and just say like, what is important to me and figure it out. And then that way you can move towards that.

Melani Dizon:

Right. So right now, with your business evolving homes, you go into people's houses a lot? Or do you ever, do you know, zoom?

Carol Chiang:

So there, yep. So, I do both zones. In fact, I actually, I would say that more than 50% of it is virtual. And the reason is because we, a lot of people just don't live in the same cities as their kids and spouses and stuff. So, I have virtual consultations where I'll have up to six people on the call at the same time providing additional information or being part of the conversation. And I really like that because I found many times where, you know, when I hear the story from the person with Parkinson's, I'll get an interjection from an adult child who says, hey, wait, don't you remember this is what happened? Oh, wait, don't, don't forget about this. So, I really realize that you get a much better comprehensive picture when you get the input from multiple members. Great.

So, I really like that. And then, you know, I guess there's, there's two reasons why I really like the virtual component of it. The other one is that sometimes when people, when you say home assessment and you're going into the home, people feel like they're being judged, assessed.

They kind of, like, if you were to try to get an 80-year-old to go in to do a driver's test, they really don't want to do that because they're worried about what the result might show and or what the consequences might be. And I think when I try to present it to people as I am more like your one 800, ask an OT, you have questions? Great. You have questions, I answer them for you. I am your advocate. I don't report anything. I don't, I don't tell people what to do. I just, I'm here as a resource for you, an expert resource instead of, you know, Googling. Don't Google.

Yeah, ask me. Great.

Melani Dizon:

So, let’s just say I've, I've called you up and I've said I'd love an initial assessment of my home. We're going to do it over Zoom, it's going to be me, my husband, my daughter what happens?

Carol Chiang:

So, what, basically what happens is I schedule everything out with the Zoom links. They meet with me if it's on Zoom, what I like to do is people send me pictures of their spaces so I can take a look at them beforehand, I already kind of have some potential risk factors or safety hazards that I see that maybe we could consider looking at, depending on what your lifestyle preferences or whatever are, what's important to you. Maybe that rug is your great-great grandmother's and it's not going anywhere. Totally fine. Right? I'm not telling you that, that there's not a blanket statement with this. It has to be customized to what that person, what's important to that person. So, they would normally send me pictures, we would get on Zoom, we have that discussion and then I send out a list of an email list of, okay, here are the things that we talked about.

Here are the things that I want you to look into and let me know when we want to do a follow- up visit. because I think that that follow-up is so utterly important. It's so, we are so busy in our lives, everybody, and there's so many things competing for your attention that the accountability part, knowing that this is not over yet. It's going to, it's the catalyst you need to say, okay, we have to go get this done and don't put it on the back burner and wait until we have a near fall to call and say, holy crap, what was it that you told me to do??

Melani Dizon:

So, we, yeah. So that at that, at that follow up, you're going around the house again or maybe they're sending you pictures above and just be like, okay, this is what I did for the bathroom. You told me to do this, this looks right, or, or I put it here based on your recommendation, but this feels like it's not quite working for a reason. A, you know, BC and you say, oh, well we could try this. Right. You could modify it for this. So, okay. And then what kind of ongoing support is it usually just like that initial one and then a follow up, and then how does it work going forward?

Carol Chiang:

So, it just depends on the person. So, some people are especially right now with YouTube, and you know, people are very d I y, which I really support and I really, you know, I want to give people whatever level of assistance they need. So, some people are very much like, listen, I need handholding. I want a weekly visit until I'm done. Totally fine. it's whatever works for you. Okay. Yeah. So, and, and that's the thing. People, it's people are just paying for my time. So, if they need just a two hour visit to, or a two hour, two hours of consult, that's, they get two hours. If you need 10 hours of consult, that's fine. If we, some people who go through that consult say, you know what? We do think that we want to look in the long term and we're going to gut this bathroom and I want you to help me remodel this from the design perspective.

And so, I just become a member of that team with the architect if there is one with the builder. And just like what everybody's used to these days with Zoom meetings, it's like I've just got a seat at the table to give my 2 cents about, okay, what design decision, what location, where does this need to go? And again, I'm the advocate for the patient. So, if the, if the builder says, well, you know, we need to gut all of this and do this, and I say, well wait, wait, I think there are other things that we need to consider you know, it's my job to speak up for that patient because they don't know any better. Like, kind of like an auto mechanic, right? Like, I don't know anything about cars. Right. I have to trust that my mechanic who tells me you need these 10 things done and it's going to be, you know, $2,000 that I actually need that. And so I would be that person to validate that yes, what he's saying is correct and that that is the best course. That is the extra, the extra thing. So, I'm a second opinion maybe.

Melani Dizon:

Yeah. No, that's great. I bet somebody would love that so much. So, I'd love to kind of just go through a bunch of things that are, I know that you can't have any like direct prescription because everybody's different, everybody's house is different, all of those kinds of things. But I would like to go down the list of Sure. Major areas and homes that you see cause a lot of safety risk for people typically. And what are some suggestions that you have? So, let's get practical here on lighting. What are some important things to think about regarding lighting?

Carol Chiang:

So, lighting hugely important. A lot of patients with Parkinson's have issues with urine, urine getting up all lot at nighttime, urine, nighttime urination. And that means that you want to make sure that your paths are clear. So, under bed lighting is one of my favorite easy solutions. You buy strip these like long skinny strips from Amazon it's about $20. You can plug it in, and I always make everything motion activated. You want to dummy proof everything, anything that you have to think about is one more cognitive load you just can't handle. And I, and the thing with people with Parkinson's is that multitasking is one of the first things that goes out the window. So having to try to do two things and try to concentrate on walking is hard. So

Melani Dizon:

Especially when you're out of asleep.

Carol Chiang:

Yeah. I mean you're half asleep and, and unfortunately people do have to get up multiple times a night. It leads to, you know, like being less awake and maybe, I don't know, less decreased, like reaction time. So yeah, you want to try to just minimize any kind of thinking. When you have the underbed lighting, you put your feet down the minute that it the sensor sees the feet, it turns on underneath the bed, it lights up the path for you. And then always having a really clutter-free area to get to the bathroom. Right. That path of travel has to be totally clear and being able to light it all the way over. I usually try to do the under-bed lighting followed by like lighting underneath the toe kick underneath where the as soon as you enter the bathroom, and then also one where the nightlight is.

So, you want to have the path down there, but also where your eye line is so that you can illuminate those areas and you know, you can buy a dimmer, no, what are they're like dimmer switch. They have a dimmer switch component to it, but where the, where the light switches, you can also put a motion sensor in there. So, hardwire it into the bathroom so that it is coming on automatically. The overhead light comes on automatically and you can set that to a low thing. It doesn't have to be, you know, bright sunlight. Bright.

Melani Dizon:

Yeah. What is, what is your what about the red lights? Everyone talks about the red, red light is like the least intrusive I guess when you wake up or something. You know, or is that just like marketing?

Carol Chiang:

I don't know. I don't love things that aren't all the time either. So, because if you do that, what do you do in the daytime?

And if you have to switch things or do things, you're, it's that balance of what's important to you. You know, are you going to be able to, like, are you going to be willing to switch them out if you need to during, for the daytime or nighttime? Or do you really just need something maintenance-free, dummy-proof, put it in there. And that's the discussion all the time about batteries versus plugins. Are you, do you have a caregiver who can change the batteries or does that not bother you to do? I mean, I hate changing batteries. I'm not the person to do that.

Right. I am going to be the person who says, okay, look, I need it hardwired or I need it plugged into the wall and we need to find a way to hide that cord, so I don't trip on it. Yeah. So, you have to know yourself. This is where it comes down to that customization, personalization, you know, who do you have to help and what are you like, I mean, you have to know yourself.

Melani Dizon:

Yeah. Yeah. Well, that's the other thing. Like whom do you have to help? I think in this situation, and we'll, you know, this is true for all of these that we're going to go through today, but there's, there are always kids in the neighborhood that are tech and can be like, oh, I'm, I have these, my kid has those in her basement. Like the lights on the bottom, the little strips, right? Like people, there's people all over that will help you do it if you're by yourself. Right?

Carol Chiang:

Yeah. You can always ask for help. And a lot of people have networks that they do have people that would help them. They just need to ask.

Melani Dizon:

Yeah. Right. Yeah. That's that big thing. Right? What about contrast in a house?

Carol Chiang:

Contrast, yes. Huge. Right. So, when I did the Parkinson's symposium at U, I think it was at UF a few years ago, we had a neurologist on and specifically talking about the changes in the eye for Parkinson's. So, the thing about Parkinson's is that it's different for everybody. Every single person's presentation is different. So not everybody has tremors, not everybody has gait issues. Not everybody, everybody's different. And a lot of things that you don't recognize are, you know, as you think, oh, that's old age, it's actually Parkinson's. So, the ability to recognize to delineate out the colors is a Parkinson's thing. So, we try really hard to have as much contrast as possible. So, when I'm selecting grab bars, for example, I love having something that's extra grippy but also dark, you know? So, one, a really easy design thing is to, if you have a white bathroom, is to do black mat grab bars, which is totally in style right now.

So, it's readily available so it's inexpensive. I love having the vinyl-coated ones. I have a lot of patients who do like dark navy, navy ones so that they can see and it's so cute because I have the spouses who also say, listen, I love it. I've got a sofa in my eyes; I can still see it. Right. So, I can hold on so I can rinse off. Because you know, one thing that happens with everybody, not just Parkinson's patients, is when you tilt your head back, you that you're activating vestibular things. And what do you do when you do that? You're rinsing out shampoo. Everybody has to rinse, tilt their head back to do that. And what's really nice is if you have a grab bar right next to you and let's call it a safety bar, because that's what it is, right? It's the same thing as safety belts in your car, it's no different. Having just something to hold onto on the wall while you do this motion is really nice for everyone.

Melani Dizon:

Do you recommend that those be drilled in or are there any that you can, you know, suction, or stick on and they're also really good?

Carol Chiang:

So, the suction ones are, are kind of my bridge to acceptance of permanent ones.

So, I wouldn't use, I wouldn't put a lot of pressure onto those kinds of things. You suction grab bars are very limited in that you have to check it every single time. If any one of them has is over a grout line, you're introducing potential for air, which then decreases suction. Okay. So, they're just, they're more work, they're maintenance. But if you're renting, you know, that may not be an option. If you are resistant and you're not sure yet, or you're not sure of location or how hot, I'll put in one with a caveat of okay, every single time you use it, you've have to check it, pull on it, make sure it's good, don't put tons of pressure on it.

Melani Dizon:

Right.

Carol Chiang:

It's not a long-term solution. It's kind of like if you one like a common thing with Parkinson's patients is not turning their head and their bodies when they're making a 90-degree turn, let's say, like, if you're going to walk from your bedroom into the bathroom, they, a lot of times they’ll hit like one particular side of the wall because they're not seeing it. So, one of the things I'll do is I'll do like a piece of tape bright colored tape to bring attention to it, and you'll notice it a little bit more. Right. And so same thing with suction ones. You get used to this idea. You do color in there, you figure out where it has to go and then you realize, oh my gosh, that is easier.

Melani Dizon:

Yeah. And then you are willing to do this.

Carol Chiang:

So, you, that maintenance, there's less maintenance when you don't have to check it every time. And, and you know, with the wall thing, you know, if you left that tape there, over time it looks grimy and yucky. So, the maintenance-free solution to that one is to paint the color paint one wall a different color. So now you're getting color contrast between the two sides.

Melani Dizon:

Yeah. And when it's the bar thing and I think, I think we're going to talk about it later. We'll talk about it. Oh, actually we're going to move to the bathrooms anyway.

Carol Chiang:

Yeah. So-

Melani Dizon:

The thing with the grab bar that I had heard was an occupational therapist was telling me that, you know, she was going into the home and doing this, and she was finding that everyone was placing him incorrectly, like at the wrong height or the wrong whatever. And so that piece of trying it might help to say, oh, right, oh gosh, it's way too high. Or how do I find the right size for my six-foot husband and I'm five six. Like, what can we do? Right. Right. So, let's talk about some bathroom issues. Sure. Aside from the grab bar, what are, what do people often have in their bathroom that causes problems?

Carol Chiang:

You know, one, I think for, especially for people with Parkinson's, it's the small movements that they think that they're doing one movement, but there, it's actually really small. So, they think that they're lifting their leg over that step to get into the shower and actually they only lifted it two inches, inches and they catch the toe and come in. So, there are, you know, you, again, it's co comes down to color contrast and habit learning the things that you need to be doing, looking down, like getting range of motion in the neck through physical exercise habit to look down and check to make sure that you are getting over there and, you know, practice with lifting your leg up high enough to do that. I, one of the easiest things that I always do is just tell people to get a shower chair to sit in.

Just because even if they don't need it all the time, one of the symptoms of Parkinson's is orthostatic hypertension, which is, you know, the dizziness when you're, like, when you go change a position suddenly, so if you go from sit to stand or you know, even turning vestibular stuff, it's easy to get dizzy, disoriented. And one, and another thing to consider is that sometimes it's a lot of exertion. So, people get people with C O P D as another diagnosis in there. You know, you have all these other comorbidities that happen as you get older heart issues that could decrease the blood pressure and suddenly you feel dizzy in the shower. It's so nice to have a place just to sit down and really it's for everybody, you know, shaving your legs, it's a lot easier if you're sitting or even washing your feet. I mean, I don't see that as a sign of disability. I see it as a sign of convenience.

Melani Dizon:

Yeah. Would you say like, you know, when it comes to falls that do, when it's in a home, are most of them happening in the bathroom?

Carol Chiang:

Yeah. The number one thing is the bathroom. Second one is the bedroom. And is that because you're rushing from the bedroom to the bathroom to get there to not have an accident? a lot of times it can be tripping over the bed covers because, you know, at nighttime if you're not careful, you're, you know, you get tangled up in the sheets in there. Or sometimes people ha kick off their shoes and they trip on those right there And, you know, it's interesting, the bedsheet issue is something that Melanie brought to my attention that I had really not heard as much in, in my practice, but she would call me and say, listen, you know, people have such a hard time, they get tangled up in their sheets at nighttime trying to get to the bathroom three to five times a night, and then they just can't find their sheets so they can't roll over fast enough.

And so, they're rushing and falling. And there is an amazing physical therapist in Canada who her background was decreasing work injuries in nurses with, who had to rotate patients like left and right or transfer them and they were getting injured. And so, they did a bunch of studies about the friction, the coefficient of frictions between two surfaces. And she took that knowledge when she retired and created a system called Comfort Linen and Par people of Parkinson's love this. My father-in-law loves this because what it is that it's a pajama and sheet set. So, the pajamas are a super satiny, really nice quality material. And then the sheets have like this little satin co no satin square, I guess like kind of right where your hips are, where the point of the key point of control is. So, when piece, when people are trying to get up from a lane, like lying flat on their back and rolling, they just go because the pajamas now slide directly, they're sliding on the piece, that section.

And then, you know, she even took it one step further and thought, okay, well look when you're because when I, when I did home health when people, when I saw satin sheets on the bed, I thought, ooh, you know, you have to be careful because if you're sitting on the edge of the bed, what happens also is that you slide off the bed. But she is a physical therapist, so she thought about this. And so, the little, I don't know, six inches to the edge of the bed is actually regular material so that you can't slide off. Oh, that's so brilliant.. Yeah. So that really solves the issue, and you are Yeah. It's amazing how many you know, people have just discovered this and said, holy cow, it's unbelievable to change. And it's what's really I think surprising is that it's the difference with her, the pajamas, the pajamas they have that go with it really make a difference in there. So, she is such a supporter of people of Parkinson's. She does discounts for a lot of people. If you just ask I will send you a coupon link in there Oh, great. To share because, you know, I just think it's this fantastic product that she's just like, that people of Parkinson's have really, really gravitated towards. It really helps so much, especially with spouses who are just tired of, you know, honey, can you push me over? Right, right, right. You know, they're able to do it on their own. Yeah.

Melani Dizon:

Oh, that's great. What are some technology that you often suggest to people?

Carol Chiang:

Well, again, so depends. So, when I have patients who have low voice quality, which is not everybody alert systems are really a great thing and it doesn't have to be high tech. See, the thing that I want people to understand is that you can just do really low tech to solve the problem as well. It doesn't have to be smart home stuff. It can be as easy as a $10 doorbell that you buy at Lowe's that is a plugin doorbell where you have a little button thing and you buy little, you buy multiple transmitters throughout the house. So, it doesn't matter where you are, if the caregiver's out working in the garden or they went to go get the mail and they're chatting with the neighbor outside and there's one plugged in out there, if you push the button, it's going to go through all of those devices. And so that's an easy way to just say, hey, like, I need your attention. Can you come in here for a second? If you wanted to be higher tech though, you know, as something as easy as the Alexa’s can be programmed to so that you can make an announcement and so that you can triage and say, you know, you don't have to be just ding. It can be like a text message and say, okay, well what was the message? Right. Love you. Or I need to go to the bathroom.

Melani Dizon:

Yeah. Right.

Carol Chiang:

So, you can get that information immediately without it having to, you know, run to the actual source first. So, I mean there, every single day there, we come out with more things wearables that have phones, you know, like the Apple watches are fabulous with the ability for cellular stuff. Their fall detection thing has gotten better. It used to be a lot falser positives, is that right? But you know, like nowadays they detect a little bit better. The ability to call for help from that is really great. So, it just, it takes a bit of research to figure out what, like what problem are you trying to solve? If you have a caregiver in your house all the time, maybe it's just a matter of getting their attention. If you live there by yourself, maybe you do need home, whole home monitoring to check and see is there a fall going on?

Do you need to call for dispatch? You know, are you just, are you needing monitoring for data reasons? I have sometimes I have discrepancies where the child, or adult child says, hey, you can't live here by yourself. And the, you know, maybe the client says, well, I'm fine. And I say, okay, well let's, why don't we put it to the test? You know, we'll put in like some sensors, not cameras, just sensors. And let's see, like how many times are you getting up to go to the bathroom at night? How many times are you know, triggering the motion alert, wandering around at four o'clock in the morning or leaving the house at different times. What are you doing? So, there are also a lot of systems these days that are detecting out patterns, lifestyle patterns things that can help make objective decisions and not just, it's a power struggle between you can't do it. Yes. I can, you know, let's have a discussion about this. Again, it's that being brave and saying, okay, like we can have this conversation together with facts. Right.

What are those options after? Yeah.

Melani Dizon:

Okay. So how about handles and switches? Obviously throughout the house, but also I'm, I guess I'm thinking a lot of the kitchen area as well.

Carol Chiang:

Yeah, I mean, you know, a lot of these things kind of fall under a universal design. So, if you can design it better so that everybody can use it's easy to do. So, like you said, I don't even think that they sell knobs anymore. everything's

Melani Dizon:

Like doorknobs.

Carol Chiang:

Yeah. I think they all come, almost all come with levers these days. And I was at the kitchen and bath show two weeks ago in Vegas, and I saw the most interesting one where you could actually stick your whole hand down like this and just pull. So, you don't even need your fingers. I mean, imagine like so many times I'll, I'll have my hands full with groceries and coming in and it's like I just, I don't even have a hand to Right. Like push down. Right. It's just I would put my hand down there and just pull or push, you know, so they, there are other ways to manage that. And what's really fun is that could be an amputee, a stroke patient. It doesn't have to be somebody who has fall fine motor issues. There are just so many things that can hand that can be for that.

So, you know, so of course the easy things levers, right? The, instead of the turns, but, and the toggle switches, that's a really easy one instead of light switches. But then of course voice activation these days, you can get all of those things to connect with the Alexa. So automatic door openers automatic lights on you know, we have spinal cord patients, so you can retrofit the entire house to unlock the door, open the door, close the door, right? Re-Lock it after. Plus, with, if you add with the ring doorbell, you're talking to the person right there. I mean there's really anything under the sun is possible. It just depends on what your tolerance is, what you know, what your budget is. What your tolerance for tech is. Do you need somebody to reset everything after the WIFI is down?

Yeah. So, decisions all really come down to, you know, money. Is it like, do you need like budget? Are you interested in luxury for resale value? Do you want it to be short-term versus long-term? Or maybe you're thinking, you know, five, I just need to squeeze five years out of this house and then we're planning to move to a facility because that's what we want to do. Or move closer to my kids. Do you know, is it your personality? Do you don't like clutter everywhere, so we need a different solution, or you like lots of stuff, but we need to change that? So, looking at the whole picture is so important about what decisions that mean after.

Melani Dizon:

Yeah. Yeah. What about furniture? Is there anything about furniture, let's say, let's say people are starting over, like they've come in, they've got a brand new nothing. What were, what are some things around furniture that you would recommend?

Carol Chiang:

Yeah, actually that's a great question because people don't think about that when they're in the furniture store. They're thinking about, oh my gosh, how beautiful this is so coz it's, right. Yeah. And what are the big problems that I see all the time? Getting up from low sofas, getting up from soft beds, you know, color contrast things as well. You know when the rug and the sofa are the same color. There are a lot of times when people are missing the r missing the couch.

And so, they think the couch is right there, but it's actually not, the perception is off. And that happens a lot with tables. I've had a lot of patients where they love the look of a glass table, but that the person with Parkinson's goes to put the plate down and they miss because they don't see it where that delineation is. And so, you know, instead of having, you know, ugly painters tape around the edges of, you know, all the cabinets and not cabinets, the countertops, and the kitchen table, you just pick differently. You buy a wood table that's a different color than the floor so that you get color perception for that.

Melani Dizon:

Great. What about surfaces?

Carol Chiang:

Well, so we kind of come down like the old, when you get older that glare is a problem. So sometimes those are not Parkinson's specific issues. Those could be just, you know, vision issues. So, if we're talking about floor surfaces, you know, we don't want that slippery surf. Those really beautiful, those really beautiful ones where it's those glossy tile, probably not your ideal thing, not for this situation, right? like, but you can buy tiles that are skid resistant, that have more skid resistance in it. One of my favorites is do makes one called stepwise. And basically, instead of, instead of like embedding, what they do is they embed like texture into it. So, there's always a certain amount of skid resistance in it. It's not like you're trying to spray on product on top that needs maintenance, right? So, I love maintenance-free, let's try to do something that's already there from the beginning. They have lots of vinyl texture, like flooring that can also be useful. See, it just depends on what, where you are, is it going to get water?

What are you looking for? Are you looking for it to be stone versus, you know, LVP maybe. And then of course surfaces, upper surfaces. So, this is where we're talking about light hitting the surfaces. Are we getting glare? Does it change it? Does it, you know, what, what are we looking at?? Just depends.

Melani Dizon:

Yeah. And then I know one of the biggest tripping hazards is rugs, but people love rugs, and it does warm up a room. It helps with sound and all of those kinds of things. So, what are some recommendations you have around?

Carol Chiang:

Rugs? Yep. So, I always try as hard as I can to talk people into tassel free rugs that can get caught up in a walker or in your shoes low pile if possible. And then Amazon sells double-sided rug tape that you can just, it's super sticky and it's just, you know, on both sides. And it'll be down like that sometimes if you change the orientation. So, look at the path of travel. So, if you're, if you're constantly going over the corner of the rug and you see that that rug corner is flipped up, it's an indication that maybe we just need to turn the rug at 45 more degrees so that the approach is straight on. And we're not hitting that over and over and over again. So, if you look at the path and you observe, you know, indications that you are, it is getting caught up in there, you want to address that because that's where your foot's going to catch it. The walker's going to catch it and then it'll be a tumble. So, I don't think it's a blanket statement to say no rugs, because look at the alternative. A lot of times people put rugs because they're afraid of falling onto a hard surface. So, if you have a fear of falling because you're looking at this blank empty, you know, wood floor, it, what's, what's the balance in there, I'm afraid versus I've got a rug. Right. So, you have to think about those components in there when you're making that decision.

Melani Dizon:

Yeah. is there anything that I didn't ask about that I should have that is important when you're doing home assessments?

Carol Chiang:

You know, I think considering the long term, really considering where you're planning to go LA later on, so, you know, sometimes when people have these huge, when they wait until you know, all the way to the end and you're looking at 50,000, 60,000, 70,000 of renovations, looking at, is that really worth it to me versus if I move sometimes really, I mean, it sounds crazy, but it's really what is the best use of your money? And I filmed a webinar with a R P a few months ago and we had the lawyer on the ARP lawyer and Amy Goyer who is the caregiving expert and me and you know, we were really talking about like, how do you plan for the future with housing, with care, and ultimately this, it was always the same message. Look and see plan ahead, plan for those money issues, what your plan is. You know, what if this happens, this is what we're going to do. So, what it, so what I'm saying is, you know, with your house, it can be the same thing. Consider the idea, would I be willing at where's my break even? Or where's the line where I say, okay, you know what, I love this house, but not for a hundred thousand.

Melani Dizon:

Yeah. And it's kind of fun. You could say like, before it's urgent, before you have to do anything, go look around at, at houses that come up and be like, oh, wow. Because I feel like that happens a lot. Right? Even forget Parkinson's, you're, yeah. You just, you think your house is fine and then you walk around and you're like, oh my gosh. Like, ooh, that is one thing we don't have that I would love to have, and this could change our quality of life by having whatever it is. Right? Yeah. But that's, that's kind of fun. And especially if you're not under pressure.

Carol Chiang:

Yeah. If you're not under pressure, if you have it in the back of your mind when you see it advertised in the newspaper that X, y, and Z community is opening and they're going to have an open house, you're going to go and check that out. And not because you're planning to move, you're just gathering information. Yeah. You just want to have like one central area where you already know that maybe that's a possibility. This is what the price is for this. I saw this really cool thing and I clipped it out and I have it in my future folder. So, you know, having ideas as to potentially where you might go, which you never might, you might never use anything in the folder, but it gives you peace of mind and it gives you a plan for what you're going to do if something were to happen.

Melani Dizon:

Yeah. Well, thank you so much. This is super valuable. So many practical ideas and I could not be more grateful for you taking the time to do this.

Carol Chiang:

Well, thank you for having me.

Melani Dizon:

Thank you. And we will see everybody real soon. Thanks.

Show notes

What Do an Occupational Therapists Do?

An occupational therapist (OT) helps people with activities of daily living, which include taking care of basic needs like getting dressed, bathing, and other aspects of hygiene, as well as the instrumental activities of daily living, which include cooking, cleaning, finance, and general management of the household. Occupational therapists help people excel in the "job of life."

An OT can help people live easier, better, and smarter. Some specific ways that an OT could help you include:

  • Preventing falls and helping you recover from them if they occur
  • Developing strategies for dressing, grooming, and hygiene
  • Improving dexterity, flexibility, and strength to help you have the life you want
  • Breaking complex activities into steps to facilitate continued engagement in what you like to do

What is Aging in Place?

Aging in place means living in your home for as long as possible as you grow older. It involves thoughtful consideration of your physical spaces and your practices of daily living to help you continue to live in your home and avoid hospitalizations and assisted living environments. An OT can help you devise strategies and skills to achieve this goal.

Home Assessments

An important component of aging in place is having a thorough home assessment. An OT can help with this process, and the process should involve considering what aspects of your house make it your home and how to incorporate these things into any adjustments to your home environment that may be suggested.

A home assessment is not intended to make changes against your will. Rather, the goal is to help you evaluate how you can adapt your spaces to help you achieve the lifestyle you want to have as long as possible.

The home assessment process can be a one-time event or a series of meetings, depending on your preferences and needs.

Considerations that a Home Assessment Might Involve

  • Lighting--Under the bed lighting can help with frequent nightly trips to the bathroom. Motion sensors can also help. It is also important to have a clear and illuminated path to the bathroom or any other location you might move around at night, such as hallways and the kitchen. Inexpensive strip lights that can help with this are available from many sources, and home automation technology with voice activation for lighting can also be helpful.
  • Contrasting Colors--Contrasting colors can help you manage vision changes. If your walls are a light color,  consider a dark-colored grab bar and vice versa. Additionally, consider that peripheral vision and mobility in the neck can limit your ability to notice corners. Adding a contrasting color with a strip of tape or paint can help avoid collisions with corners or doorways.
  • Bathroom Set-up--Some grab bars used in showers or other places are available with suction cups. These are less strong than models that can be bolted in, so suction-based models must be checked often to ensure they haven't come loose. Also, because people with Parkinson's sometimes make small motions or take smaller steps than they intended to take, raised areas at the edge of the shower are important. Contrasting colors can be helpful here. Another convenient addition to a shower is a chair to make cleaning your feet or shaving easier and help minimize the risk of dizziness when washing your hair.
  • Night Clothes and Bedsheets--Some people with Parkinson's may have difficulty turning in bed or slipping off the bed. There are products designed to help with this that have variations in texture to help prevent slipping and generate some grip with minimal sacrifice of comfort.
  • Handles and Switches--Lever-based door handles can be easier than rotating knobs. There are also automatic door openers and other digital home assistant integrations that can help with many aspects of safely and conveniently navigating your home.
  • Furniture--Low seating can be challenging to get into and out of, and it can be important to add some color contrast if the furniture is the same color as the floor covering. Also, glass tables can also be hard to see.
  • Floor coverings--Some tiles can be very slippery. There are tile floors that have extra texture to help reduce the chance of slipping. Some rugs, especially those with tassels, can get caught in a walker. Sometimes simply rotating a rug can help alleviate tripping hazards.

Additional Resources

Comfort Linen

Comfort Linen Site with Carol's Discount

StepWise Tile

Under Bed Lighting

Gear and Gadgets for Living Well with Parkinson's

Parkinson's Home Safety Checklist

Setting Up Your Home to Live Well with Parkinson's

About the Speaker

Carol Chiang

Carol Chiang OTR/L, CAPS, ECHM, CHAMP is an Occupational Therapist and Owner of Evolving Homes. She has over 20 years experience in a variety of settings including Ortho, Neuro, and Chronic Pain, in addition to designing Return to Work Programs and Home Modification. She is a Certified-Aging-In-Place Specialist, holds an Executive Certificate of Home Modification and is a Certified Home Assessment and Modification Professional. Carol is also Certified Parkinson's Wellness Recovery therapist with advanced training in manual therapy and other pain control modalities. Her private practice specializes in treating complex neurological and orthopedics cases that have not responded to traditional therapies to minimize pain or restore function. She is passionate about exercise as medicine and believes that it’s never too late to develop healthy habits and routines that can improve quality of life.

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