Patient Advocacy and Parkinson’s

Andrea Malsom @myvoicetherapy and Andrea Rosenblume @HealthcarePathways

Strength in the Face of Parkinson’s - Podcast Episode 3

Listen as Andrea, Speech Pathologist of My Voice Speech Therapy, discusses the role of Patient Advocacy with Andrea Rosenblume of Healthcare Pathways. Andrea R. is a board certified Patient Advocate with her own private practice based in the San Francisco area. She uses her kind and passionate nature, along with her extensive training and experience as an adult-based Occupational Therapist to now care for her clients as their own cheerleader. 

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Excerpt

Andrea Malsom: Andrea, I really love talking with you the other day and hearing about your services and I jumped at the chance to interview you. I want people to know about the options that they have. We talked about how they don't know what they don't know. Well, there's patient advocates that can help you. That's amazing. And it's so valuable for people with Parkinson's, but also with any diagnosis. Would you like to share more about your resources and your experience?

Andrea Rosenblume: Absolutely. I have been a patient advocate with my own business for the past six years. And I was an occupational therapist for many years in the San Francisco bay area. And what I do is I help people navigate through the confusing, complex and overwhelming healthcare system. Whether it be in a doctor's office or a hospital, skilled nursing facility or any other healthcare setting.

I help people try to relieve the stressors and frustrations that they may feel when going through these complexities and frustrations in the, in our healthcare system. I help people in doctor's offices understand new diagnoses, new treatment plans, change of treatment plans. I also help them reach out to get a second opinion because often my clients don't realize that they have a right to a second opinion.

I help them understand treatment options and explain to them, as much as possible, what these options entail, risks and benefits, and also allow them to know that in their choice of options, they can decide to have no treatment. It is totally up to them to make these decisions.

I don't make the decisions for my clients, but I inform them so that they can make educated decisions that are meaningful to them and their medical condition. 

Andrea Malsom: That is so wonderful. You are absolutely right. It's overwhelming. And it's a confusing process to go through the healthcare system here in America.

I really love the idea that you were an occupational therapist, turn Patient Advocate. Can you take a step back and explain the training that allows you to be this Patient Advocate for people? 

[00:02:53] Andrea Rosenblume: Sure. As I mentioned, I was an occupational therapist for about 20 years. I always had the focus and goal of trying to help my patients reach a level of independence so that they could hopefully go back to their home environment and be able to live a quality type of life. Even if they also leaned on support from others for areas that they had challenges with. So that was really my goal, whether I was working in, in somebody's home or working in hospital settings or other settings.

It was great because I could see them in the hospital or facility and discharge them home, or I could go see them in the home, but it never went further than that. You know, what happens when they later face another ER, visit and hospitalization, or what happens when they go off to their doctor's offices?

You know, are they left on their own? Do they have support with them? I found through a personal experience with watching my parents and other people I knew going into hospitalizations or ERs that it was very difficult for them to speak their mind if they were feeling ill, very difficult for them to know what to ask for, to make them feel better.

They may not have had a friend or family member by their side. That's when I got into Patient Advocacy and decided this was something that I wanted to do and explored if it was an actual profession and it is. I got certified as a Patient Advocate through a board certification and I've been practicing ever since.

I practice as an independent private practitioner versus there are advocates in hospitals and they're employed by the hospitals. 

Andrea Malsom: Yes, okay. 

[00:04:40] Andrea Rosenblume: And so there is a difference. I wanted to have my allegiance for my client or the patient. I didn't want to run things by another regulatory system. And so that's why I, I entered private practice, but in a hospital there are advocates who will look out for patients and try to get their questions answered. But really it's an allegiance to the hospital. They're trying to lower any risks that the hospital may face. And so I feel like I can stand up to an institution more than somebody who's employed by an institution. So that's why I went the way of private practice. 

Andrea Malsom: Yeah. I could see that. And I could see the value of that patient in the hospital, knowing that you are there and helping them through that process, or, you know, a phone call away or physically there and caring for them, knowing who they were before they came to the hospital.

Knowing their goals or unique situations that they're aware of, that they don't even think to mention to the healthcare workers. You can put the pieces together a little bit. I love that you go and can care for them and voice their needs.

I can see how a a healthcare professional has a lot of regulations that they have to follow in their hospital and then they're there to treat that medical incident. And you are someone that can help them through it.

It's like you're a family member in a way. 

Where they were beforehand and this visual of what their life is like. And then you bring that with them because the patient in the hospital is just stripped down.

They're, they're in a medical distress, they are in an unfamiliar place. They have these strange interactions with these people. It's not this full conversation. You can't spend an hour with everybody and you don't wanna tell your story over and over again. 

Am I correct that you can go into the hospital with them?

[00:06:31] Andrea Rosenblume: Yes, I can absolutely go into the hospital and that's often the only advocate or person, for that patient.

And so they will allow me in. Oftentimes the patient will add my name to the medical chart so that the doctors can talk to me. 

And share information with me. And then I can be involved in the team meetings there, too. 

[00:06:57] Andrea Malsom: Oh yeah, that is wonderful. Yeah. How does the hospital respond to your role?

Andrea Rosenblume: Very good question. Because I was uncertain as to, you know, how I would be received when I first started doing advocacy and I have not had any resistance. I like to tell people who I am and how I know the patient. I go in and I share that, you know, I've been working with this patient, this is what's going on. And I'm really there as sort of like an added on member of their team. I like to work with them and that helps them actually, because they learn from me the nuances about the patient and maybe what goes on in their home life, or if they have any family. Things that I can share that the patient just, you know, they're not feeling well. They don't feel like talking. They don't feel like sharing and maybe they're under medication and they can't, you know, think it's clearly.

I can be their eyes and ears and be able to be part of the team. And that's what I, I really explain that to the doctors, I'm part of your team and this is what I know and how can I help you? And they seem to really appreciate it. Even when I go into doctor's appointments, on an outpatient basis, you know, my client introduces me. Lets them know that I'm I'm there and I'm willing to help them. And I'm not in an adversarial role, I'm there as part of team. 

[00:08:16] Andrea Malsom: Yeah, I love it. I love that. That's so wonderful. I could definitely see how if there's any confusion with understanding the patient's situation or discharge plan, or, you know, what's happening, there's a social worker and patient advocate in the hospital, but knowing that you're a part of the team, they can call you, they can contact you as well to confirm things. If they see your friendly face, they can absolutely chat with you to say like, oh yes, you are. You are another page in this story that this healthcare provider can see of the patients experience in their situations that they have to go through in their life.

The patient doesn't wanna go through the whole story with everybody all the time. 

Andrea Rosenblume: Right? Exactly. Exactly. 

Andrea Malsom: And they don't know. What's the important facts to share with the healthcare providers you, with your medical background, with your occupational therapy background, you can connect those dots and get right to the point, while making sure that you're advocating for the patient's needs. And then I love the idea that you're also then educating the patient and probably even their family members, you know, and giving them that extra time to understand, comprehend, ask questions, identify what questions to ask next time. And just give that bridge for them and I love it. 

Contact

Andrea’s Instagram • Andrea Rosenblume's Advocacy Instagram

You can also find her at healthcare-pathways.com

Occupational Therapy and Parkinson’s Disease

Andrea Malsom @myvoicetherapy and Lindsay @EquipMeOT

Strength in the Face of Parkinson’s - Podcast Episode 2

Looking for ways to safely live at home for as long as possible with a progressive neurological disease like Parkinson’s? Occupational Therapy services can help you and your caregiver be as successful as possible in your own home.

Andrea, Speech Pathologist and owner of My Voice Speech Therapy, discusses the role of Occupational Therapy for Parkinson’s with Home Assessment Specialist and Occupational Therapist Lindsay from EquipMeOT.

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Introductions

Andrea: I'm Andrea, I'm a speech language pathologist, and I focus mainly on recovering voice for those with Parkinson's and I am here with a wonderful occupational therapist. And she's going to tell about her services specifically occupational therapy in general and how that can help those with Parkinson's.

Do you wanna introduce yourself? 

Lindsay: Absolutely. So my name is Lindsay. I am an OT of about 10 years also in Michigan and have worked primarily in the adult neurological community. Everything from brain injury to stroke, to you know, any spinal cord injury and many Parkinson's patients throughout the years, I'm LSVT BIG certified.

So I've worked with the LSVT program for about five years and have worked with a lot of folks in that. So that's one way that OT can kind of work with speech. As I know, LSVT LOUD is often a, popular therapeutic choice for the Parkinson's community. I also run a virtual or a virtual platform on both YouTube and Instagram called equip me OT, which medical and non-medical equipment and adaptations and modifications to help people stay safe and independent in their homes and communities. 

Andrea: I love, it sounds like we have kind of the same timeline or background, at least we were both in Michigan, last five years working with Parkinson's that's lovely. I love my OTs and I love when you have the certification for LSVT BIG. You're right. LSVT loud is definitely something that I'm, I'm certified in and a lot of people around the world know of LSVT. I'm also certified in speak out program by Parkinson's voice project. They're a nonprofit, it's a little different than the LSVT LOUD and BIG services, but I'd love the occupational therapy component of LSVT BIG. I love my PTs that do it, and we used to collaborate a lot when I was in the hospital work for outpatient. But I love the background training that you have.

Lindsay: Absolutely. And I've spoken annually with students about LSVT and occupational therapy, because it is often more correlated with speech, language pathology and physical therapy. But OT has a very strong connection with LSVT because there's a functional component. Occupational therapy is always going to focus on individual functional needs.

So that can range from using the restroom to being able to swing a golf club. You know, we really kind of can stretch through the entire. The entire day, the entire, you know, your entire experience and, and help you find ways to accommodate, modify, or continue to be able to do the tasks that you want to do.

[00:03:00] LSVT does a really good job of kind of breaking down into functional components, which is something that they refer to a lot. So they break down an individual task, like swinging a golf club into the small pieces that would require the functional movement to do it. And so OTs are very naturally good at breaking any given activity into each of its little tiny individual functional components so that we can find ways to keep people active and keep people participating in their daily lives. 

Andrea: I love that idea. And again, that's exactly why I thought it was functional. I love the idea of the golf swing. Just because the it's the big motion that needs to happen. And I mean, just getting to the golf place and getting into the cart and getting to that, you know, getting out of the cart with big intention and then swinging it big. I mean, I know a lot of people that love golf and that love to continue their swing in their game.

So tell me little bit about occupational therapy and occupational therapy for the adult population.

Lindsay: So OT, occupational therapy, is going to be focused primarily. Your activities of daily. Which is going to be any task that you do to get through the day. And this can, like I said, be oftentimes focused in the home. We look at dressing, grooming, bathing, toileting cooking meals, you know, really how do you take the physical actions that you're and the cognitive actions and things, and put them together to create.

[00:04:00] And OT is kind of the bridge. I like to say we're kind of the bridge between the physical cognitive and the function. So we're gonna help you get to those tasks. That really matter. We're very individual focused. We, we set all of our goals directly around the person their environment. And that's really where I specialize.

I have a lot of time spent in home modifications and improving people's access to their homes and their communities through identifying ways to either modify, use equipment. You know, working through different therapeutic processes that have that focus on function always. So that's, we're kind of a we cover a lot.

And so we can get kind of muddled and confused, but I like to really, you know, kind of boil it down, especially in the Parkinson's community to that. Functional goal based task completion. 

Andrea: Yeah. I love that. Great. I was a part of a support group. I joined as an listener to a support group last night in Kalamazoo here at the friendship village.

And they talked a lot about environmental changes and ways that they can support themselves. There was a range of people that were there. They were saying that, you know, I don't have an assisted device right now when do I start? 

Should I learn that now? Is there an opportunity for me to see a specialist now? So then I'm more successful? As we know falls and swallowing changes are kind of the primary reasons of medical changes with Parkinson's disease. 

Then at what point should they start seeing someone like an occupational therapist.

Lindsay: I mean, I find that the earlier on in the diagnosis that you start to see people who can kind of provide you with guidance and resources, the better. And unfortunately, oftentimes in my practice, I was seeing people after one of those events all fall. A an aspiration event that landed them in the hospital for a prolonged recovery.

So they developed weakness and then we were being called in to see them. Now it's important to note that from an insurance standpoint, that may be the only option to see an OT is once you have been approved. And, and, but if you advocate for yourself early on and say, I'd like to get as much information up front as possible and you have supportive practitioners working with you. As far as your medical team, they can get referrals out and OT, especially for, I think we have a ton of value to come in early on in the diagnostic process to help you kind of evaluate your home environment. That's a great place to start. You may not need a lot of modifications initially, but if you have an evaluation done of your home, we can help to identify spaces and certain layouts and things that may be problematic for you in the future as a disease progresses.

Obviously the goal being prevention, prevention of falls prevention of ergonomic issues with continuing to do something in a way that's physically damaging over time, whether that's for the caregiver or for the person with Parkinson's. And I, I really like to have that kind of upfront because then we're doing a lot of prevention and keeping people home throughout their diagnosis versus having them, you know, eventually make hard decisions about leaving their home environment, which is typically the, you know, preferred space to to age in place in.

[00:07:00] I like to say early is best, but it's not always realistic depending on what the financial situations and the insurance coverage. 

Andrea: Absolutely. That makes total sense. You can kind of think of it as a big picture. Like I want to be in my place as long as possible. 

Lindsay: I have spent the last seven years of my career in home health which was through a couple of different agencies. And actually that's where I got most of my Parkinson's experience was in home health. As it was frequently requested by physicians to have a patient who was seeing a decline in function, have an OT, PT evaluation in the home environment.

So that is a wonderful place. I find a lot of people go to outpatient clinics for their physical therapy. I find that OT its place is in the home. We, we really can't simulate your home environment. So, so yes, most of my work is done directly in the patient's home or in a facility. If they reside in a, a nursing facility, assisted living or even an accessible apartment complex, I've done a lot of work in those environments as well.

And. You know, that's my bread and butter. That's where I love to be. And I think most people will find that if you see an OT in the home environment, you're really gonna see us in our most practical where you're really gonna start to see where we can give you most value. Not to say you won't see us in, in outpatient clinics, cuz we absolutely are.

You'll see us in inpatient clinic. You know I started out in inpatient, acute care as well as subacute units and things like that. But really where you see us flourish and especially in this particular community is in the home. 

Andrea: Yes. I, I can see your face light up when you're talking about being, 

Lindsay: I love it.

Andrea: You're gonna their home and just like see their challenges. I love the idea of you saying the the damaging, repetitive behaviors that aren't efficient or could hurt them possibly.

Lindsay: Yes.

Caregiver Support for those with Parkinson’s

[00:09:00] Andrea: So can, can you break that down a little bit more? What does that mean? 

Lindsay: So I, I find that caregivers sometimes get put on the back burner. We tend to focus our attention primarily on the person with the diagnosis. And maybe we, we neglect to recognize that caregivers carry a lot of the weight of the diagnosis as well.

And so from my experience as much time as I spent working with directly with the person with Parkinson's, I try to mirror that in the caregiver because like, like I said, with these ergonomic and damaging positions of like assisting with transfer. So say you're helping your loved one get in and out of bed every single day, maybe multiple times a day, doing that over a long stretch of time. Initially may not seem like a big deal, but five years in 10 years, I mean, these things can be very physically damaging and result in the caregiver either no longer being able to provide assistance anymore and having to hire that.

Or becoming burned out very quickly and, and starting to harbor some psychological and emotional challenges that really put a lot of strain on a relationship, especially if it's a loved one, providing that care. So I like to make sure we highlight the value of having certain modifications in place, not just to support the function and independence of the person with Parkinson's, but also to bring in the caregiver and have them be just as supported and again when you can go into the home and do that, you see the, the very specific ways cuz you can't simulate somebody's home with their floor post bed and the bed that's, you know, super high up or really, really low or this old bathroom that has, you know, funky flooring and you can see all those things in person and make those modifications and it can make.

Gigantic differences in prevention for both the person with Parkinson's and the caregivers alike. And build and empower, empower people too. Right. Because a lot of people are super overwhelmed with taking on a caregiver role and empowering them to have the tools to know that they can get through it as well is, is very valuable.

Andrea: I love that there has been a push to support caregivers. To be functionally supporting the caregiver while I think you mean while you're working with the client with Parkinson's disease, you are able to expand that support to the caregiver by still focusing on the client with Parkinson's disease. So that's really nice. It's kind of sounded like, well, would you have to do a separate charge for the caregiver and give that kind of coaching support? Well, not necessarily.

You can still have the client as the primary source and then say, what are their support systems in place? Is it the equipment? Is it the bed height? Is it the caregiver? I mean, that makes total sense. So going to their home is really valuable. I do that myself with speech therapy and my, if we are in a program for LSVT LOUD or SPEAK OUT! it's three to four times a week for four weeks, it's really intense.

And it's so valuable for me to bring myself to them. So there's limited travel and wait times and traffic. However the added benefit is me going into their home and seeing the challenges and seeing their inspiration for communication and requesting those specific items and putting that into play with the speech therapy so they can be louder.

[00:12:00] So I can see them eat their own food and make sure that they're safely. Swallowing things. You get to see the, the noise of the, the dog that might run into their way, like for you, for physical items and the distractions that they might have. It's so much more relaxing for the client.

Best Equipment for Parkinson’s Homes

What are some equipment that you might identify when you want to support someone. I know it's not across the board the same, it's very individualized. 

Lindsay: Yeah. So I have some favorites that I have used repeatedly with the Parkinson's population.

One of them being an alternative to the traditional grab bar. So I find a lot of resistance to the installation of grab bars. Many, many people have them and love them. But I also find that some people are a little resistant to the idea of a traditional grab bar, but. And especially in Parkinson's where stability is so important where having something to hold onto can provide that feedback that's necessary to initiate big movements.

Having a grabbing point, especially in bathrooms, near showers, near toilets, sometimes in living rooms near a, a favorite chair or sofa, things like that to assist with the getting up process. I love this brand S T A N D E R. And it's called a Security Pole and it is a vertical pole that is tightened into position using the concept of like attention rod.

And so there's no installation with additional screws. You can add screws for stability. I find that in most cases you don't need to, and it simply acts as a pole. And it has usually a pivoting grab point that you can move 45 degrees all around it's wonderfully diverse use product that in the Parkinson's community, it's around, it's under $200, so it's not cheap, cheap, but it's still less expensive than hiring somebody to install a bunch of grab bars.

And because it's a flexible use item, you put it where you. Key being, you have to have a flat floor, flat ceiling, no bolted ceilings and no drop ceilings, cuz it has to have tension between the two. But I mean it's a wonderful product that I wish more people knew about. 

Lindsay: I recommend them all the time. And so often that people are like, I've never seen this before. So it's, that's my like secret weapon tool that I always like to bring up with these. And, and especially in this community, it is so, so useful. So the security poll is one of my favorites. 

Andrea: I love that. 

Lindsay: On the YouTube channel, there is a full description video.

Andrea: And then so the poll, it sounded like there was another like so there's a vertical pole and then there's also a horizontal grab. Is that what you said? 

Lindsay: Yes. There's a horizontal piece. Several different designs, one that has a fully perpendicular straight out piece. And then there's one that has, they call it the curved grab bar. So it makes like a kind of like a letter B. And so you have multiple grabbing points. So if you're sitting down, you can grab it at a lower point. If you're standing up, you stabilize at a higher point, you can put them next to a bed.

Yeah. So one thing with Parkinson's is we tend to over the progress of the disease. You, you see a lot of people start relying on beds that have elevating heads and. Which are great, whether that's a hospital bed or more often than not, we're using, we're seeing those pretty low cost beds that you can purchase that have adjustable, but those don't work with 99% of the existing bed rails and bed rails are super helpful for folks with Parkinson's assist with the rolling and getting in and out of bed.

[00:15:00] but if you're using an adjustable bed, they don't work with those particularly well. So that's another place the security pool can come in is in a bedroom next to the bed to give a grab point. And this has benefit for both the person with Parkinson's and maybe a caregiver who is having to provide that physical assistance with rolling and getting in and out of bed safely.

Something I'm observing a lot in the homes is that people are getting these nice adjustable beds, which are so comfortable, but all of a sudden it eliminates 99% of the bed rails that are available on the market. So just something to be aware of. 

Andrea: Definitely. And that's, that's the beauty of professionals like us.

We have this experience, we have these trial runs, we go into their homes to really see the actual function. And it's really great to think about what do they do several times a day in their home and what stress do they put on their own body and what stress do they put on their caregiver as well? 

Lindsay: Yeah. Yep. And another, another thing that I with the specifically with Parkinson's, I see a lot of folks who transition from standard seating to a power assist recliner, which has a lot of therapeutic debate because of the loss of function that can oftentimes come along with starting to rely on things that lift you into standing position versus you using the strength in your legs to do so. I tend to take a much more individual approach to that if the, and my, my rule of thumb is if you need a piece of equipment so that you can have enough energy to get through your daily needs, then it's something to consider.

If the act of getting up and down from a seat is so demanding that it's causing problems for you and your care. It's absolutely worth considering bearing in mind that it may produce a little bit of decreased strength, but overall I'm much more focused on how we can balance your daily activities to accommodate the most quality of life as possible.

So that's kind of where I fall in with equipment. 

[00:17:00] Andrea: I love that idea! So you're saying in those chairs that are basically recliners, but they allow the, the chair to basically lift up. So it's a recliner that lifts all the way up and allows for the person to be pretty much standing. Right. So the debate is if the chair is using the muscle, then that patient isn't using their muscle for that stand sits a stand lift, but you're saying that there's some energy and challenge in the ability for them sit to stand. So that might be supportive for their body. 

Lindsay: Right? It's all about supportive care. It's all about accommodating whatever needs that are there. I'm a big proponent of having it in place, but not having to use it. So one of the things with Parkinson's disease is I've seen this happen often when they're doing medication changes and you'll see sometimes the medication change isn't agreeing with them and all of a sudden they'll have a decrease in strength and function for a week while that medication is being worked on having a piece of equipment, like a lift chair in place for that tough time.

Is really, really incredibly beneficial to then because they're gonna need it. But as the, as the medication changes you know, figure out or you heal up or whatever it is that you need that for a period of time, you eliminate using that and you can use it as a regular, it's kind of like. Escalator versus stairs, just like you turn off the escalator and it's still stairs.

You don't use the stand function on the sit to stand recliner. It's still a recliner, you know? So I don't paint with quite as broad a brush when it comes to those things, because I'm a bigger fan of having the supports in place for when you need them. Understanding how to use them appropriately. So with, with, that's a very complex one, cuz I think some PTs might come at me for that statement.

[00:19:00] Andrea: I know. Yeah. And then just as a reminder, this is not medical advice. If you, if you are this is just education and we do recommend those listening to speak with their medical provider. The one on one, which you've touched on a lot here is really helpful to identify your individual needs. 

Lindsay: Absolutely.

Andrea: so yesterday when I was a part of that support group, they were talking about like, well, you know, maybe adding equipment to support that posture and basically it's that making sure that they stay in that upright posture.

And they just mentioned the urban polling company that has those walking sticks that are primarily for, in front of you as they're walking through and just getting that good posture and being able to exercise successfully without having a fall and an injury with that. So I love the having it there.

So it's a lot of awareness of reminders. I could see how needing a check-in with someone like you periodically as the disease progresses and the caregivers change, that would be a beneficial item and to, to catch those kind of things. Yeah. To say, oh, like you weren't using that last time, you know, is it because of what's going on strength?

Conservation of Energy

[00:20:00] Let's talk a little bit more about conservation of energy. I saw that recently on your post, on Instagram as well. Can you talk a little bit more about conservation of energy?

Lindsay: Yeah, so the energy conservation principles are one that really facilitate the maximum amount of function. Based on what your tank holds. So I, you know, I know in the arthritis community, it's the spoon theory. You have so many spoons throughout the day, and if you use them all on this one task, you're not gonna have enough left.

I often refer to it as gas in the tank. Like you, you only have so much energy throughout a day. And each individual person is completely different from this standpoint and it can be different from day to day. So having things in place that, you know, you can utilize to conserve a little energy so that you have enough to accomplish all the tasks necessary in a given day.

[00:21:00] So it's a very much a trial and error, unfortunately. We're all going to accidentally use more energy than we intended on tasks. And we're gonna learn from that opportunity. And that's the, that's a big piece of this is you're not going to put in a bunch of things and be like, nailed it on the first try.

I , I'm, I'm full of energy now and I can accomplish all of my goals. It's very much a kind of like you, you sometimes journaling can be really helpful and be like, this is what I did during a day. And I was spent by two and be like, well, okay, clearly you're using more energy on this or this task than you thought.

And let's, how can we modify. A big one right now. And since the pandemic has been grocery shopping. So one of the great, like one of the biggest uses of energy that somebody can do, and this can be something that like affects them throughout the week is grocery shopping. The process of getting there, the process of walking through the store, making a list, all of those [00:22:00] steps and then getting home on loading everything that is a heavy, a burden on somebody who has a limited amount of gas in the.

So I, I always the use of grocery delivery services has, you know, cut that effort in half or having somebody who can help you with that grocery shopping task. Make sure somebody's gonna meet you at your house. If you live independently can somebody meet you at your house to help you unload your groceries for 30 minutes?

Just, you know, take one part of the task. Save a little energy on it and then see if that helps you to function better that day. Cause I have folks who will grocery shop. That is the only thing they can do that day. You will not see them take a shower that day. They can't do laundry.

They can't cook for themselves. That grocery shopping task took every ounce that they had. That's not, that's not a reasonable way to live so that I use that as an example, because it's such a big. But every little task we do can be made more efficient if we evaluate how our body's best complete a task.

I know I use the example in my Instagram with like using a stick vacuum, you know, instead of a, a corded vacuum, not having to unplug and re-plug the vacuum in can make you capable of doing the whole job versus having to do just a small piece of the job or having, having seating in your, like, I always, I'm a big proponent of the kitchen and the bathroom stool have a small stool next to your kitchen sink.

Have a small stool in your, in your in your bathroom. Sit for some of those tasks, you'd be amazed how much energy you can save by simply taking a seated break for five minutes and washing those dishes while you're sitting down, instead of standing those things matter and they add up over time. Yeah, and, and that, and that's really where that concept, I think can carry a lot of value for people, but you have to be very in tune and attentive to what your body is telling you throughout the day.

So that's a big piece of this. This is, this is not an easy thing to, to get right on the first or second or third try. It is a lot of trial and error and I think that's a piece of it that maybe gets missed sometimes to go to like, oh, here's. Here's my handout with my energy conservation ideas, I'll implement these and my life will be changed. It's like, eh, takes a little bit more than. 

[00:24:00] Andrea: Right. And I could see, I could see people being inspired by that post. I did see the stool in the kitchen close to the sink. And you were washing the, the dish and resting on that stool.

So it kind of inspires people. Yeah. And if they are at the perhaps at the early stage or mid stage, and they are able to have that insight and they're able to assess if they need it or not and be able to journal through the day and then take a look at that day to see what areas could be improved.

I could see. Your posts are very inspirational. And that's one of the reasons why I reached out to you to have this conversation. But I think you're right. There needs to be another level of kind of conversation with a professional in your area to say like, am I thinking about this right?

I'm now realizing I have an opportunity to change the amount of [00:25:00] effort I'm putting into these tasks because I'm tired and it's not just because of my medication or the sleep pattern. Because I'm just fatigued all day. And I hear that a lot on TikTok. People talking about fatigued with Parkinson's disease and just, you know, hopefully that can help them.

Parkinson’s Fatigue

Do you think the fatigue factors the same ideas as conservation of energy or energy? 

Lindsay: Absolutely fatigue. Fatigue is ubiquitous across so many diagnoses and even just existing in this world, these days is fatiguing. And I think we all benefit from understanding and being more cognitively aware of how we utilize our energy resources and, and just trying to be more, you know, more willing to make changes.

Cuz that's hard. Change is really, really hard and you're not gonna do it overnight. Incorporating equipment, incorporating modified strategies is not something I ever expect. Anyone to just like take it on and it becomes so part of their routine, it, it can take a really long time for something to feel normal and comfortable.

Andrea: Wow. 

[00:26:00] Lindsay: And it just, it to build a new habit requires so much time. So I, I love to show people some ideas and concepts that maybe can inspire them and get them thinking critically about their process. And then from there we try to, we try to work it into a, a habitual task, you know, make it habitual, make it easy.

So it doesn't take extra thought to make something happen. And I have found that the, especially with the grocery shopping one, once people get into the, the habit of delivered groceries, that might be the easiest one to kick off your kick off your energy conservation. Cause I don't know about, but I. I hate going to the grocery store.

Andrea: I know, I know. And you mentioned like bringing it home and then unpacking it, bringing it up those stairs, putting it then putting it away fast. I mean, there there's a timeline that has to happen for like eggs and milk as well. And then I was thinking like, and then you have to cook it for dinner that night.

Yes. Like that's, there's so much to it. And actually now this week, or at, at these last few weeks, I've been able to arrange my grocery shopping. Outside of the days that I have to do these big cooking meals. So it's, it's kind of like yeah. I, I know I can grocery shop and I know I can make a good cooked meal, but maybe not in the same day.

[00:27:00] Lindsay: Yeah. And, and that's just it, you know, and that's energy conservation principles right there. You just didn't label it as such, you know, it's like, that's, that's how you got to get through these days. I know I'm a mom of two little kids. 

Andrea: Yeah. 

Lindsay: And my energy is, I mean, by six o'clock at night, I am like, don't talk to me. I need to lay down. And I realize it's because I didn't do a good job of conserving energy where I could, so that I'd have the energy to enjoy my kids at the end of the day. So we all have different motivations for seeking that little extra. And I love as an OTA, I, I always try to, to shine a light on the value of quality life and the value of doing the things you want to do.

Because so often we put all the energy into the stuff we have to do the got to take a shower. I got a grocery shop. I got to cook these meals. I got a vacuum. But we wanna spend time with our families and we wanna have the energy to do that and make that the cuz that's the stuff that really matters. So I really firmly believe that the value of putting some effort into changing the way we do things can have so much value in the end of you know, this, I was able to spend more quality time doing the things I really cared about.

[00:28:00] So I'm very passionate about it. 

Andrea: I love it. I love it. And I love the idea that you're saying that these techniques take time to put it in place. Some are excellent to have in place like that chair with the option of lifting them up at some points. 

Anything else that you in the home that someone is surprised about with modifications?

Parkinson’s and Self-feeding

Lindsay: So a big one that I have spent a lot of time working on with individuals and I imagine this is a crossover between speech and OT is self feeding. And with tremor management this is a huge one and I have. My grandmother has tremors, not related to Parkinson's, but does have pretty severe tremors.

So I've been able to, she's my very willing Guinea pig, try out a whole bunch of different options for managing and it's, it's pretty wild because there's a huge range of options for people. And maybe they don't recognize that or realize it right away, but everything from the pricey, you know, gyroscopic motor based silverware, like the lift wear product that will help to accommodate tremors by absorbing the movements in the hand which I've had some success with.

[00:29:00] I thought it would be with, with the price point. I thought it would be a miracle. But it's not, and that's just the reality of a lot of equipment, but some low cost solutions I have found to be incredibly efficient. For many, which are things like hollow medicine, spoons. So in pediatrics, oftentimes they use a medicine spoon where the, the, the actual body of the spoon is hollow and has measuring.

To be used as a, as a means to give liquid medication to children, turns out that for self feeding, especially liquid things like soups very thin broths, things like that, where with a tremor is devastatingly impossible. Aside from drinking it with a straw, which some people are comfortable with and other people really would prefer to use a spoon.

[00:30:00] And sometimes with, with swallow difficulties, a spoon is a safer option cuz you're getting a smaller amount. Those hollow spoons work wonderfully because it contains the liquid all the way to the mouth before it reaches the mouth. And then you tick tip the liquid in, so it's not splattering. 

Andrea: Oh, that's amazing.

How so, can you describe it to the listeners? Like how do you get the liquid into that hollow spoon and then how do you. 

Lindsay: So the, the spoon is actually, it's a standard small they're meant for children. So they're a smaller spoon, not like a big soup spoon, but the ahead of it is small.

And then the body of the spoon, which would normally be the handle is actually a hollow open. And there's an opening. So all you do is you would scoop the, the. liquid then tilt it and the liquid would then drop down into the handle of the spoon. You would bring it to your mouth and tilt it back. And it it's a, it's a different motion.

And that can take a little bit of practice if you're in one of the later phase. Of Parkinson's where you have, you know, difficulty initiating movements that actual tilting movement can take some practice. There's other spoons options too, that are partially covered. So those I've at intermittent, they're kind of, okay.

[00:31:00] The medicine spoons are just like 50 cents a piece. So I love them because it's like you're out. Nothing. If you try it, it might help you with a few. It's also a good way to take meds pills. Ah, you scoop them onto that. Cuz sometimes the little pins are grasp to grab a piece of a small pill is very difficult, so you can scoop it with the spoon, tilt it in and then tilt it into your mouth.

So I love small solutions that are low cost, sometimes have big value and we don't always think of them first because they don't. They don't look as fun. 

Andrea: That's lovely. 

Lindsay: So another one is adding weight. We all, I mean, you've seen weighted silverware if you've every, just about every Parkinson's patient has probably seen weighted silverware at some point you can make your own weighted silverware.

I had a wonderful patient who actually would tie her normal silverware, and she had this black satin bag. That was really lovely. That was actually, I think initially for, for jewelry, she'd fill it with nickels and she would tie it to her silverware.

[00:32:00] I kid you not, and she'd balanced it such that it was like in the palm of her hand. So it added weight to her silverware without her having to do anything else. And this is the, Ingen the ingenuity of those living with the conditions. I am not the professional, they're the professional I'm simply facilitating and sharing what I learned, but it was brilliant and it worked great to give her just enough appropriate, receptive input to help control her tremor, you know?

And so it's amazing. There's, there's so many ways. So self feeding is one that I have spent a lot of time because there's a lot of frustration around. Yeah, so for tremor management. 

Andrea: Yeah. And that's something that you can take to the restaurant too. And it's, it's that tool in your toolbox. I love it. Yeah. So definitely the value of quality life.

I love that comment. 

And it's great to have technology nowadays.

Lindsay: yeah, it can be very valuable and, and it is, it is something that I've been incorporating more and more into practice is how can we take advantage of new services and technologies to make life a little bit more convenient for folks who are already dealing with enough challenges.

Virtual Home Visits

[00:33:00] Andrea: Do you do any like virtual consults or any kind of support in that way?

Lindsay: I have during the pandemic, we incorporated virtual visits. I struggled to be honest as a, as a person who is very engaged in the physical space, I struggled with telehealth, but it is absolutely something that we're incorporating more and more because it is in demand. So we're, we're in the process of adjusting how we do our work so that we can be as as useful in that, in that sense.

One of the ways that OTs in telehealth can be really, really useful is in the process of the home evaluation, using a video chat function on a phone, we can get a pretty good sense of the home. Layout and set up and provide pretty immediate feedback about areas of concern, areas that we would identify as priority to make adjustments, to, to whether it's to bring a loved one home from a situation where they've been housed elsewhere because they can't safely return home.

[00:34:00] Or if it's just a preventative measure and somebody would just like some information, cuz they've been recently diagnosed or, you know, are just thinking ahead. OTs can be really good in that telehealth capacity. 

Andrea: How does one go and find an occupational therapist that's focused in on these same areas, is it any occupational therapist? 

Lindsay: So typically if you are seeking out an OT for home based services. So whether that is to simply work with you in your home, because you are home bound you cannot safely leave the home.

Or if it is just to do a home evaluation to evaluate the physical space of the home and, and to help you create a list of accommodations that would be helpful for you is a little bit different. So when you're, you would seek out initially a physician who is willing to write a script, for that.

And if you are somebody who's considered home bound, that would qualify under Medicare services, as well as most other medical health coverage to have a certain number of visits allotted to you for occupational therapy and they would come to your home and they would treat you, and there's a, a multitude of different home health agencies.

And it's a good idea to do a little bit of digging cuz not all home health agencies are going to be able to support that type of service. You'd wanna ask specifically if that home health agency has an occupational therapist who is capable of doing home evaluations? There is, if you're in the state of Michigan, which both you and I are, there are a few extra services because we also have some wonderful, the.

HMOT a is the home modification occupational therapy association, which is housed out of a south Haven area, I believe, but it's in Michigan and they will send out OTs to service. Any location in Michigan to evaluate homes for modification needs. Yeah, they're wonderful. And so they're, they are already, they have created a network of occupational therapists.

[00:36:00] Who are very tied to the home modification world. So if that's your specific interest, that's a great idea is to look for organizations that specifically support home evaluation needs the certification. You may wanna look out for, whether it's through for an OT or for a contractor who may be doing work on your.

It's a caps certification, CAPS, which actually stands for certified aging in place specialists. They're going to have a background certification that provides them with the basic knowledge of universal design, accessibility, those types of things. And that's gonna be very much focused on home modifications and, you know, help you to identify people who are vetted in that area of expertise.

So that's OTs can be certified and that PTs can be certified. You know, anyone can get that certification, social workers, you name it. But it's a good place to start. If you're looking for people that have that area of expertise it can be out of pocket. You can, may have to pay out of pocket for these things.

But certainly know that some of your HSA funds can also go to cover some types of evaluation processes. It's good to be aware what your insurance is going to be willing to do for you as far as home based and community based therapy service. 

Andrea: Yeah, good point. 

[00:37:00] A lot of these sound really reasonable and easy to implement. However, it's really fine tuned to their needs, their home, if they have a caregiver or not and their environment and their physical needs.

A lot of people right now are sharing that they've had deep brain stimulation for their Parkinson's diagnosis, DBS and kind of how that's impacting their progression of these symptoms. And to help manage themselves a little differently as someone who went through education for Parkinson's disease we learned a lot about.

The insight is kind of impaired their ability to recognize what's going on live in their voice and their communication, but in a lot of different ways, like the shuffling, not realizing that when they cross that threshold into that door, that their brain's going to give them a different message.

And then they shuffle into that door and increase risk of fall. But with the DBS, I'm noticing a lot more insight and awareness and advocacy. 

Lindsay: Yeah. Advocating for those needs up front is, is very valuable for sure. Yeah. I mean, if we, if we, as medical professionals we speak a lot about prevention and you know, being really aware of that, it unfortunately work in a system that still doesn't support that fully.

So it is a lot of times falls on the backs of the patient themselves to advocate for their prevent. Interests. And, and you're recognizing that these are going to be issues down the line, but I don't have to be stressed about that because I can have the information and I can have the, the systems in place now, so that when it happens and, and I always like to point out, it's not a self-fulfilling prophecy to make adjustments before you need.

[00:38:00] It's kind of like, I own a walker, but I don't need it yet. Well, but you have it so that when you, if, if, and when you ever do need it, it's there for you. But some people get nervous. Like it's a, self-fulfilling prophecy. If I own this thing, [00:39:00] it's just me saying, I'm admitting that I'm gonna get that bad. And there's a, there's a, there's a psychological component to that that we have to all work through.

And each individual person faces that differently. And so I'm always very aware of like where people are at in that phase of the process as. and how open people are to making changes now to prevent challenges in the. 

Andrea: I love it. I love it. And thank you, Lindsay, for speaking with me, I can't wait to share this information with a lot of people that would benefit from this caregivers providers other therapists and especially those with Parkinson's disease.

So I definitely appreciate it. Did you wanna review your website and your information?

Lindsay: Sure. Yeah. So I, my website is EquipMeOT.com and there you'll find some written information about various pieces of equipment and how to modify your home to make it more accessible. I also have a YouTube channel under the same name, equip me OT.

And then I can also be found under EquipMeOT on Instagram. So I'm happy to respond to questions, comments on any of those platforms. And it's been, it's been a pleasure. I'm happy to be here. 

Andrea: yeah. Lovely. Thank you again. And thank you for your support with those with Parkinson's that community and getting this message out to everyone is really important.

So I appreciate hard work and it's really entertaining how you do it.

Lindsay: That's great. Thank you. 

Contact

Andrea’s Instagram • Lindsay's EquipMeOT Instagram

Speech Therapy and Parkinson’s Disease

Andrea Malsom @myvoicetherapy and Mark @MarkinthePark21

Strength in the Face of Parkinson's - Podcast Episode 1

If you are on social media and connected in any way to the Parkinson’s community, chances are you have seen Mark’s content at @MarkinthePark21. It is even likely that he introduced you to the social, engaging, and supportive Parkinson’s community on Instagram and TikTok. He is a wonderful advocate for those with Parkinson’s and shares how he is handling his own personal diagnosis of Young Onset Parkinson’s Disease. His humor, kindness, and inclusion is so powerful and I am honored that he volunteered his time to interview myself during my first podcast interview.

Please enjoy our discussion through my modified-for-blogging show notes, below,
or through the recording of Strength in the Face of Parkinson’s, Episode 1 wherever you listen to podcasts.

Amazon Music   Apple Podcasts   Stitcher

Introductions

Andrea: Hi, I'm Andrea Malsom and I'm here with Mark. I was sharing on Instagram how I was going to lecture at Gray Strong Foundation about speech therapy and Parkinson's. And he was messaging saying that he was bummed that he couldn't make it and that maybe we should do an interview about what speech therapy is.

Mark, you wanna tell us a little bit about yourself?

Mark: Yes! In February I had the anniversary of my one year date of my diagnosis from Parkinson's disease, which I felt was a significant date because I had made it through one year.

And my first year in diagnosis, so to speak has been such a learning year. It's been such a year of growth reaching out, trying to understand. and try and understand the disease that I have or the condition that I have and understand the remedies and the things that can help and those things.

And there there's such an individuality to Parkinson's that there's a lot to learn because it affects so many different people, different ways. And one of the things as we discussed was, was speech therapy, something I hadn't even really gone down the road on, which is why. Your sessions were interesting to me.

As I try and learn and grow in my knowledge of Parkinson's and what helps Parkinson's people. And so that is one of the significant things I did in my first year with Parkinson's was just trying to learn. And so entering year two, trying to expand on that knowledge. And that was part of this conversation.

In trying to understand what you do as a speech therapist, speech pathologist, and working with Parkinson's people. One of the things I was struck by was that I really didn't know what you could do for me or somebody with Parkinson's because I don't really know, like the old saying you don't know what you don't know.

And that's kind of what I felt like when hearing about your sessions, I thought, why, why, why would I need this?

Becoming a Speech Pathologist

[00:02:06] Can you tell me a little bit more about your background and your training and what you've been?

Andrea: Yeah, that kind of goes hand in hand on why a speech therapist would land in this kind of specialized position to help those with Parkinson's disease.

I'm from Michigan, the Metro Detroit area. I always loved the one-on-one tutoring and kind of being a counselor. I did my undergraduate schooling at Western Michigan University and that's where I met my husband, that's where I got into the speech pathology department. It was a perfect mix of my interests and my personality as a helper. And then my graduate schooling at Wayne state University, which is Detroit area.

Through speech pathology, I realized that I like the medical, adult side. I was passionate about helping adults regain what they had lost and what they were very motivated on returning back to. I really liked learning about the things that we didn't know, like:

How do we breathe? Like what turns that button on to breathe and where do we breathe from? That's where the voice comes from the, the sound articulation that we have, the emotion. And so if any of that pathway is impaired, how do we overcome it? It was like a puzzle to me.

The brain can be impaired and impact speaking, communicating, thinking, and swallowing in a different way than if there was like a muscle injury.

And the rehabilitation is different depending on the side of injury and the, the cause for that change. Those adults were so motivated to return back to the, their job or the way that they used to talk or back to their foods that they like to enjoy.

And that was that's different in my view than if I was a speech pathologist with children. So it, it just, I, I kept heading that direction. I got jobs in hospitals and nursing homes and long term cares and then I became an outpatient speech pathologist and I was able to add another certification, start my own practice, and really put my whole heart into supporting people.

How Parkinson’s Disease Treatments Differ

[00:04:34] Mark: Well, you, you just said so much there, and that is fascinating, but one, one of the things you, You mentioned the therapy is different from somebody that has a traumatic head injury, as opposed to somebody that has Parkinson's and a lack of dopamine. There's two different methodologies there, right? There's two different. Ways you approached that, right?

Andrea: Absolutely.

It's very different than the slower progress that with someone that has stroke even post concussion syndrome, head injury.

Sometimes it takes a long time for those, to recover and get back to their normal self. With Parkinson's, it's really rewarding, because you can reach these levels of clarity so much quicker.

And that was another reason why I fell in love with the treatments for Parkinson's disease, I can get the voice stronger the first day I meet them like it's just, it's amazing that to see that.

And the challenge is different. Parkinson's does not allow them to realize if they're being loud enough. Parkinson's gets in the way and you have to break through Parkinson's barrier every time you go to speak and that's very challenging and you have to learn a new way of regulating your voice.

Do I need Speech Therapy for Parkinson’s?

[00:05:48] Mark: When somebody realizes that they need to come to a speech therapist and, and, and get your, your service, would you say that most of the time they're aware of it or did somebody bring it to their attention? I mean, how does, how does somebody know?

Andrea: Good question.

Mark: I'm just thinking of a Parkinson's patient that may be told by their spouse that they're not speaking as loudly as they used to, or, you know, along those lines. So how do they normally come to the realization they need speech therapy?

Andrea: They need the education and they need that time to take on that information.

And talk about:

• Are they experiencing people not hearing you?

• Have they had a lot of people ask them to repeat themselves?

• Has the world developed a “hearing loss” in their life?

• Do you have drooling and coughing and choking?

I have to get through the feedback loop that's impaired by Parkinson's. We go through the whole process of let's try it out, let's do a video recording and then play it back and see the difference between when I had you just talk normally and then when I cued you to talk in a different way.

Another way that they come to me is that they're noticing changes. They they're noticing that their speech is either too fast or too slow that they can't understand themselves. Their family can't understand themselves and they just feel like their, their mouth is just moving way too fast.

But they still need all the awareness they need, they need all the education and they need that time to take on that information and kind of guide them through that process. So it's a, it's a mix like you said, there it's a mix of symptoms people experience Parkinson's differently. They, they experience speech changes differently.

90% of people that have Parkinson's disease will have a speech or swallowing change sometime in their progression but only a fraction of that get speech therapy.

Mark: That's a huge percentage. That's that's amazing.

Andrea: So it's, it's not even, you know, a, an acceptable amount that, that actually receive the help that they could benefit from.

And I'm really curious about how much the DBS the deep brain stimulation is impacting that process. Are they more aware of it because of the DBS? You know, how is that changing?

Mark: I'm learning more and more about that deep brain stimulation.

And I've noticed that there are some people that have deep brain stimulation implants still talk really, really fast. And I wondered about that. Is that something that, that DBS has, has helped already, but maybe hasn't helped if that makes sense. So that's interesting. That's an interesting variable to the Parkinson's whole situation. Interesting.

Trouble Swallowing for Parkinson’s Disease

[00:08:49] Andrea: And unfortunately, the swallowing changes that can eventually occur can cause the eventual passing of someone with Parkinson's. That can be supported by speech therapies efforts to change that course from happening.

Mark: Absolutely. Yeah. I know. I had looked at a website. There was something listed like 70% of people pass from you mentioned the aspiration.

Andrea: Aspiration pneumonia, which is the food and liquid going the wrong way and settling in your lungs and then staying there and then developing an infection. And that aspiration pneumonia is related to swallowing change or coughing or choking over time. That's 70% of those with Parkinson's disease pass away from aspiration pneumonia.

Mark: Wow. That's that's crazy. Now you mentioned earlier being able to even impact the types of food that people eat. Can you explain that a little more because I, I think this is kind of interesting.

Andrea: Yes, Speech Pathologists provide dysphagia treatment, which is trouble with swallowing. We identify if they're having change in swallowing, what's causing that change and how we can help them. Swallowing can be impacted by Parkinson's and helping them sometimes is changing the diet consistency, changing the utensils that they're using like a certain straw cup that slows the quickness of the drink.

And speech and swallowing exercises that really help their ability to be safe while eating and swallowing.

Mark: Right.

Andrea: And drooling suggests that the muscles around your mouth can't contain the saliva, or the food that might be leftover in there. It also might suggest that there's a loss of initiation of swallowing. You don't effectively swallow each time you do swallow something down.

[00:10:27] Mark: Wow. Yeah. It's one of those things. There was a thread there on social media and, and gagging and swallowing actually came up. And a number of us with Parkinson's we're discussing in that thread. How many of us find ourselves periodically choking or gagging? And, and I've been embarrassed by it because I'm, I'm over 50 years old. I should know how to swallow by now. Right. But yet in the last I would say in the last three years there's been issues.

And one of the things that I had read is that some of the non-motor symptoms of Parkinson's can actually set on well before the actual motor symptoms of Parkinson's. So in other words, before the tremor starts, other things can start happening. And I wondered about that was, was it the, the swallowing issues that I was experiencing part of this as an onset.

And I, I do know that my handwriting, so I get my little pen out here. My handwriting literally changed over maybe a year and a half before experienced my tremor. And I, I got really micro writing and I got to the point where I can, I have a really hard time writing at all anymore. And so I wondered if that gagging and swallowing issue was, was part of this.

Andrea: Yeah. And you know, maybe you were noticing small changes. And in what I've heard from my patients is that they notice the change in their swallowing early on with the diagnosis, but it hasn't gotten worse.

So it's kind of like, it's It it's kind of there and they they've accommodated for it.

Mark: True.

Andrea: They withdraw from certain foods and they don't realize what else that they can do. And they can work with speech therapy on that.

Mark: Right.

Andrea: Especially if they're having any voice changes because the voice exercises that we do, the really specific ones for Parkinson's disease, help with swallowing and help with the drooling.

Voice Therapy for Parkinson’s Disease and Swallowing Changes

Andrea: The research knowledge that we know is that your body has to use a lot of intent to be able to perform. We sit down and we perform vocal exercises, also breathing exercises, facial expression it's all connected.

And I guide you through this process to say, what does that feel like to you being loud? And if you're feeling the loudness coming from, your diaphragm, then you should be loud enough.

• So where do you stand? With loudness rate of speech, hoarseness quality, facial expression, monotone pitch all those characteristics of communication.

• And what happens when you're doing it in conversation?

• What happens when you're doing it in reading?

• What happens when I throw a motor task in there?

• And what happens if I throw a cognitive task in there and then I identify, okay, what can we reach?

• So if I give you a clue to do it this way are you able to hit that, that mark?

And the muscles are not injured, they're not cut. We just haven't been using them and you use it or lose it with these muscles. You can't see these muscles that well and you can't feel them that well but people can hear the change. They can hear the weakness.

Mark: Right. So the atrophy, just like any other muscle, right.

Andrea: Yeah. So over time we do exercises to build that up, but they have to be this intense exercise because that's what Parkinson's needs to be able to gain that kind of benefit from physical exercise.

Mark: Sure.

Andrea: Like we do a lot of voicing and exercises and practice while you're doing other tasks at the same time. And just trying to challenge your brain.

What does Speech Therapy for Parkinson’s Look Like?

[00:14:01] Mark: How long are you sessions?

Andrea: The sessions are about 50 minutes, to an hour. But the important part is, is that the frequency it's three times a week, three to four, depending on what program you use.

Mark: Wow.

Andrea: Three or four times a week for four weeks straight. And then you get that muscle strength up, you get that awareness going and then you're able to carry over on your own, doing your homework and be more aware of it by the end of the month.

Mark: That's that's you used the word intentional and I love that because yes, with Parkinson's, to your point.

You, you have to become intentional about a lot of things. Whether it's speech therapy, whether it's exercise, diet change, there's a lot of things that you have to do. And, and that's pretty intense when you're talking about 45 minutes to an hour, that many times that's, but, but it's like boot camp for speech therapy. Really.

Andrea: Yeah.

Connecting with Clients

[00:14:59] Mark: So when you think back on the, the people that you've worked with, is there a favorite story, somebody that you worked with that maybe stands out that you like here was a breakthrough that really brought a smile to me or that I really enjoyed seeing this happen along those.

Andrea: The first story that comes to mind is a gentleman he was in policy making for healthcare. And he had Parkinson's. We were able to connect a lot about where the healthcare world is going and kind of having these big conversations and it was just really, really wonderful to be able to to hear him and hold a conversation and he was able to do the board meetings with more success.

Sharing in the Joy

And the last day was Halloween and he showed up in Zorro with a cape. I showed him the photos for my Halloween party. And I was Michael J. Fox from back to the future.

I had the red vest and the jeans and, you know, the, the, the plaid shirt or whatever.

And he actually didn't do that well the last day. And I was like, what's, you know, what's happening here? Like you were so good with your voice. And he said he was he was really sad to stop our meetings. He really, really saw a difference when he had motivation to meet someone and have this connection. And he, he sounded devastated that he was stopping our service. So we brainstormed some other social events that he could continue doing and ways around this to help him.

And then also to talk to his neurologist. The, the mood changes that could be happening because of the literal brain changes in your brain as Parkinson's patient.

And then one more other story I had just, I, I have some really great clients that I worked with.

The other client was someone who was had kids in college, two girls in college and he was still working. He was a manager at a factory and we improved his voice and he did really well. His plan was to announce to his employees that he had Parkinson's disease and he wanted it to be the strong message. And he wanted to show them that he wasn't weak and he was still capable. But he wanted to do it on his own terms to share his, share that story beyond his family and into his career that he built. And he was able to do so because of speech therapy.

Mark: That is awesome. Boy, that's impacting some people in, in a tremendous way and I can I can just see you dressed up as Michael J. Fox looking for doc brown, Marty, you know, it just be great, you know, with, and you traveled back in time to be a Zorro.

Andrea: Yeah. It, it was good.

Social Isolation in Parkinson’s Disease

[00:17:33] Mark: Well, and you mentioned you helped him with his self isolation. So I mean, that's really going beyond speech therapy. That's the, that's the caregiver in you coming out? That is actually something I was talking with a friend of mine recently, I tend to be a social person.

I tend to enjoy being around people and I have had a tendency to withdraw and to be self isolating and some good friends of mine have been calling me out on that. And, you know, Hey dude, you need to do this. Right. And that's what friends do. And I love the fact that, you know, you went above and beyond the speech therapy to help this man with his isolation too, to make a plan, to give him. Some some things to think about to make sure he is not self isolating because it's not good.

Andrea: To acknowledge it, but also to say like, yeah, it could be the Parkinson's don't be so hard on yourself Michael J. Fox foundation had a lot of PDFs on apathy and delusions and the mental health side of things. I also kind of snuck it in there when they had to do their reading challenge. I gave them the, the PDFs of the, the nutrition ones And the DBS once and they had to read it out loud and, and learn a little bit about their diagnosis a little bit more. If, if you had Parkinson's apathy and withdraw, and then you also had loss of ability to maintain a conversation because you're flat in your voice and you are quiet and they don't wanna, you know, keep asking you to repeat yourself. Then those are two big bomb shells that kind of withdraw you from the society.

It doesn't have to be that way.

Mark: There you go.

Andrea: Yeah. That's I mean, that's why I love this, you know, the field that I'm in and then also the specialty that I found myself in it's. It's amazing to give them that connection. Like I got to know that gentleman, right. Both of them because you get to see them so often in a short kind of period of time, but they get to share your life and they, they get to find someone that can I actually hear them.

And it's kind of like the first exchange of that in a few years. And it's, they're just thrilled that it can happen again.

And it's surprisingly how many people in the area, but also nationwide are not aware of the connection of speech therapy and Parkinson's. So that's why I'm doing my service to get the word out that we need more people to be aware of this.

A Day in the Life of a Speech Pathologist

[00:19:52] Mark: Right, right. So, what is your current schedule? You're doing a lot of different things. I know you're doing some classes. What, what, what is your current schedule?

Andrea: So today I had a patient in person. I saw someone here in Kalamazoo. I traveled to her house and I was able to bring my tools.

I just have a little bag that I carry in, in her own setting. We talk about the things that she's interested in that she's used to.

And then I provide two different levels of the weekly class that's supported by the Parkinson's voice project. I've gotten some really excellent feedback and they say it's really nice to kind of see someone else in their same shoes, struggling and trying to overcome their voice changes with Parkinson's and that's excellent. That's just, just a free, free class. Kind of hard to call a class because it's like a support group in a way. But the prerequisite is that you do have to have speech therapy under your belt for Parkinson's.

Mark: You must compete that speech therapy first before going to that. Gotcha.

Andrea: Yeah, And then this afternoon I had a virtual client that I saw in Florida.

Mark: Yeah. The, the pandemic has brought about technology like zoom and other yeah. Things like that and normalized it, which in your case is probably a good thing because you can do this this way.

Andrea: I agree with you a lot more people are comfortable with it too, when they've had a doctor's appointment or a checkup virtually over the pandemic. And so, you know, it's not a big leap to therapy.

How to Find the Right Speech Pathologist Near You

[00:21:18] Mark: Sure. So if I'm wanting to get ahold of you for your services, how do I go about doing that? How am I gonna get in touch with you and say, I need some speech therapy?

Andrea: I have a free consult, a virtual call, on my website MyVoiceTherapy.com. It's a good way to get to know my services and figure out what the next step is, if it, if speech therapy is right. And then if you have a script, you can contact me on email, call me, or schedule your initial visit through my website.

There's also resources on my website, to learn about the different certifications. LSVT LOUD, which a lot of people know of the LSVT BIG. And the SPEAK OUT!, which is supported by the nonprofit Parkinson's Voice Project. So I, I have a landing page for that so you can find someone in your area or your state because of virtual services.

Mark: Right. Yeah. And your website's got really good information there.

Andrea: Thank you

Mark: Some great direction. Like you said by going to your website, I can find somebody here in Arizona that can help and find resources and those things.

So that's fantastic. And your social media, by the way. Very entertaining. You've got some good stuff out there. You've got some stuff that brings up some good education and information. You've also got a lot of fun stuff, so I really do appreciate that.

Andrea: Thank you for those comments. That's so sweet. I'm having fun with it.

I did one that is basically like a slight of hand. I change the scene in a really kind of fast way and now I kind of feel like I have to do that every time, but, I agree with you. I, I try to keep the content really focused on speech therapy or kind of describing the, the things we're talking about here.

Why Speech Therapy Motivates those with Parkinson’s

[00:22:48] Mark: So in looking at your, your repertoire, is there a, a favorite session that you like to do over another? Is, is that a fair question or is there something that you enjoy doing like you look forward to each week or something that, that stands out to you as something I really like.

Andrea: So I would say the evaluation is really fun because I get to like open the door to the other side.

Mark: Right.

Andrea: And they get to like, see it. So that's kind of fun cuz I get to like guide, start guiding them through that and then, ah, it's, I have a, like a program to follow in a way. But I try to be so individualized to the patients. And then also their limitations, if they're having trouble like reading text, or they're really not into reading out loud we're not going to do that.

But one of my client's daughter is going to get married and he's going to do the father of bride speech. And we had to work on that and build up to a, long speech. And just fine tuning, the sequence of events to get to that success, to get to that level.

Some people are really into music. So we talk a lot about music and we do categories of music and describing the music and. You know, a traveling musician is someone I used to work with and like just the stories that they had and the tangents that I could get them on.

And and then challenging them and saying like, oh, I didn't, you know, that wasn't loud enough. Or to being able to kind of clue them in a really direct way. So they can be more successful.

Mark: Well, I was just gonna say it, it, it shouldn't surprise me that somebody that's a speech therapist listens to their people, because that's really what you're telling me.

You meet people, you listen to what they're interested in and, and where they're at. And you tailor it to that. And I really love that because it is individualized sessions. Yeah. But it's also in their wheelhouse. It's something they're interested in. It's that music it's, it's what they're interested in, which helps them be engaged in the, in this therapy. That's fantastic.

Andrea: Absolutely. Yeah. That's that's what, what gets them better,

Mark: Right.

Andrea: If it's motivating to them. They wanna regain back to that meal or to that conversation or to that job again regain their voice and their speech and their swallowing ability. And if they don't have that motivation, they don't see that other end. Then it's, it's hard for me to motivate that.

Mark: Right.

Andrea: And it's, it just been, it's been very, very rewarding to be able to help people. But it's. It's rewarding when I get to meet someone, even another provider or like a physical therapist they don't know the connection of speech and swallowing and Parkinson's disease and I get to spend that moment and discuss that. That happens very often. And I don't want that to be the case. And so I'm, I'm here to support that kind of that change.

Conclusion

[00:25:35] Mark: That's great. This has been an absolute pleasure for me. And I just wanna say having gotten to know you through social media you have been a delight and in the Parkinson's community online, I am finding is very supportive and very engaged.

And though you're not a Parkinson's patient, you are part of the Parkinson's community. It's not just me. A lot of other people out there have felt that support that you have provided in just the inclusion there. So we really do appreciate what it is you offer, but also just being so supportive day to day.

And we really do appreciate it. I know. I appreciate it, Andrea. You're just fantastic. So this has been a pleasure for me.

Andrea: Thank you.

[00:26:13] Mark: And I really do hope that this helps to get word out on how you can help. And if it's not you, like you said, but they can still go to your website and still find assistance.

So maybe once again, what's your website.

Andrea: MyVoiceTherapy.com. And I do wanna say it's been a pleasure speaking with you. I knew it would be, and I knew this would be wonderful. And I know your motivation is to learn for yourself, but also get to get the knowledge out. Thank you. I appreciate you doing this with me.

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