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Parkinson’s Podcast – Episode 5, Transcript

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[00:00:00] Kat Hill: Parkinson’s in particular is one of those diseases that it’s vital, that we keep moving.

[00:00:08] Dr. La Faver: I always recommend people to find exercise they enjoy doing, because ultimately it doesn’t matter if the optimal exercise is something that you’re just not gonna stick with.

[00:00:18] Anna: In addition to prescription medications, there are also lifestyle changes a person with Parkinson’s can make to improve their daily lives.

[00:00:26] Wayne: I look forward to it, my boxing classes, cuz I’ve become good friends with a large number of people in the community.

[00:00:33] Anna: In today’s episode, we’ll talk to physical therapists and personal trainers who work with people with Parkinson’s disease.

[00:00:40] Dr. Brandy Archie: Find a way to get moving and keep moving to help really slow the onset of Parkinson’s. So if you’re at the early stages, you wanna slow this down as much as we can for as long as we can.

[00:00:51] Anna: And we’ll hear about how home adaptations can help people manage their symptoms.

[00:00:56] Dr. Brandy Archie: Let’s have a place to sit down. We can add, grab bars to the bathroom, to help with just having a place to hold onto, to give you a little extra stability.

[00:01:05] Anna: Welcome to the Parkinson’s disease podcast. I’m your host, Anna Stoecklein. The Parkinson’s disease podcast was created for educational purposes only. It is not a substitute for formal medical advice. Please talk to your qualified healthcare provider for personal diagnosis and treatment.

[00:01:22] Kat Hill: Exercise and staying social the research shows are really the two things that help to slow the progression of the disease.

[00:01:31] Anna: That’s Kat Hill, who shared her journey with young onset Parkinson’s disease in episode 3.

[00:01:37] Kat Hill: And so by getting involved in a regular exercise program that brought me both things, it took me to classes where I learned how to box and do high intensity interval training and met a whole new community of people that was really life changing for me.

[00:01:54] Anna: All the research shows that exercise is key to living well with Parkinson’s first, let’s find out why.

[00:02:01] Dr. Campbell: Your medical provider might prescribe you medication for Parkinson’s disease, which is gonna have a huge impact. But then where I come in is the exercise route.

[00:02:10] Anna: This is Ashley Campbell, a physical therapist with years of experience, working with people who have Parkinson’s disease.

[00:02:17] Dr. Campbell: The right type of exercise for Parkinson’s is really important because we know that with intense exercise, while we can’t replace the dopamine and the cells that have been damaged and lost at the time of the Parkinson’s diagnosis, we can improve the brain’s ability to use the dopamine that it has. We can improve the brain’s ability for that communication between the cells, by adding that exercise in as treatment.

[00:02:40] Anna: You don’t need to be a lifelong athlete for exercise to be a part of treatment for Parkinson’s disease. Ashley explains that exercise can be tailored to the needs of each person.

[00:02:51] Dr. Campbell: Everybody’s gonna have some different kind of complaints. So if the stiffness in the body is really something that we wanna target, we might do a lot of flexibility and range of motion exercises to help with.

[00:03:03] Dr. La Faver: I always recommend people to find exercise they enjoy doing, because ultimately it doesn’t matter if the optimal exercise is something that you’re just not gonna stick with.

[00:03:14] Anna: This is Dr. La Faver, a movement disorder specialist with expertise in lifestyle interventions. That means she’s interested in helping people living with Parkinson’s to make small changes, to improve their symptoms.

[00:03:26] Dr. La Faver: Trying different kinds of exercises people might have enjoyed earlier in their life and finding ways to get back to it is I think the key here and building those habit loops. That being said, there certainly is a dose effect. And, uh, so one of a standard recommendation is generally to aim for 150 minutes of moderate intensity exercise per week.

Now with moderate intensity exercise, simple way to judge this is your brisk walking, you should still be able to talk, but maybe not sing . So definitely you wanna try to get a little bit out of breath, push yourself. So with that 150 minutes per week, that would mean 30 minutes, five times a week.

[00:04:06] Anna: That could sound like a lot if the person wasn’t active at all before their diagnosis, but there are different ways of staying active for everyone.

[00:04:14] Dr. La Faver: Many people have restrictions as far as chronic pain joint issues. So the first goal is really to find feasible ways to exercise. You can do things in a pool. You can do chair yoga. There’s really exercise modifications for people at every level of activity and fitness.

[00:04:32] Anna: Some newly diagnosed people like Jeff Lasley, might believe exercise will use up the small amount of energy that they do have.

[00:04:40] Jeff Lasley: I thought that I wouldn’t be able to exercise like I had before. It was bad for me, that would deplete what little dopamine I had left in my brain or whatever. But ,it turns out, that exercise is actually very important for maintaining your ability to function and slow the progression of Parkinson’s.

[00:05:01] Anna: And physical exercise can help more than just your body. It can also help create relationships and improve brain health and mood.

[00:05:09] Jeff Lasley: I started doing an exercise program through the Brian Grant Foundation and I still do that to this day with the same trainer. Initially, it was scary, but gradually I found a whole community of people.

[00:05:25] Anna: A systemic review of all recent Parkinson’s exercise studies by a team of researchers across three international universities showed that people with Parkinson’s who exercise regularly see improvements in their overall quality of life, including the slowing down of motor symptom progression and a reduction in depressive episodes.

We’ll link to this review in the show notes. Choosing to do a slower, more controlled activity like Wayne Folkston can improve balance symptoms.

[00:05:53] Wayne: Tai Chi, which was also good for teaching me how to shift my weight and place my feet and helps me with balance cause balance is continuing problem. And, fortunately, to this point I’ve not fallen and I attribute Tai Chi to that.

[00:06:10] Dr. Campbell: Things like yoga and Tai Chi have gotten really popular because they help with those kind of smooth and slow coordinated movements that really help target the stiffness that can come on with Parkinson’s along with balance. When we think about Parkinson’s, it’s a condition that causes us to move smaller and slower over time. So when we do exercise for Parkinson’s, our goal is to get you moving as big as you can with as much intensity of movement as you can.

[00:06:38] Anna: Boxing is a style of exercise many people with Parkinson’s have adopted.

[00:06:43] Wayne: I’ve really enjoyed boxing. It’s a, non-contact, it’s misleading in a way because you don’t hit anybody. You hit a bag and there’s something more satisfying about hitting something. I’m surprised that I enjoy it but I look forward to it. My boxing classes, cause I’ve become good friends with a large number of people in the community. And I would recommend it for anyone with Parkinson’s

[00:07:07] Anna: The excitement around boxing is in no small part due to Kimberly Berg, trainer of Rebel Fit Club’s, Rock Steady program.

[00:07:15] Kimberly Berg: I come to you today from the Rebel Fit Club in Oregon, and we do boxing for Parkinson’s through Rock Steady boxing. I have five affiliates, but we also have a whole gym dedicated just to people with Parkinson’s.

[00:07:35] Anna: Building spaces online and at her gyms, exclusively for people with Parkinson’s has created a truly unique space for those, with Parkinson’s to do the exercise they need.

[00:07:45] Kimberly Berg: While some people say they love the exercise, it’s the comradery and the safeness of coming into a facility where they’re free to have tremor. They’re free to move slower. They just feel like they’re accepted here. And if you are not so scared of being seen, you move more freely.

[00:08:10] Anna: So if you’re thinking of stepping into your first boxing class, Kimberly explains why this sport is great for Parkinson’s symptoms.

[00:08:17] Kimberly Berg: We do non-contact boxing because of the large stepping the rotation, learning sequences slowly, quickly, lots of multitasking because multitasking is difficult for people with Parkinson’s.

When it comes to exercise as a part of the treatment program for Parkinson’s, the key message is to find things you enjoy and participate as often as your care team recommends.

[00:08:45] Jeff Lasley: I like to exercise a lot. I work out every day, which is really important from slowing progression.

[00:08:52] Anna: You may also want to consider when you take medications to get the best result from the time you spend exercising. In the episode about medications we spoke about on and off time on time is when your medication is working best.

[00:09:05] Kimberly Berg: The other thing is make sure that if you are on medication, that you’re in your on time, when you are working out, you wanna be fully optimized because then you’re gonna get the best bang for your buck. If you’re off, you’re gonna be slower. And you’re not gonna really feel like moving, but if you’re on you feel like you can do all the good things.

[00:09:30] Anna: You’re listening to the Parkinson’s disease podcast. Part of the Health Unmuted library to find other series about a variety of specific health conditions.

Search for Health Unmuted on your podcast player, or visit our website healthunmuted.com.

We now know how important exercise is for Parkinson’s treatment and alongside community classes and online workout videos, a physical therapist like Ashley Campbell can be a great member of the Parkinson’s care team.

[00:10:00] Dr. Campbell: Physical therapy for Parkinson’s. It’s gonna be very different than other types of physical therapy.

Intensity of exercise is really important. It has to be challenging. It has to be hard. So we’re doing some aerobic exercise where we’re really working to get your heart rate up and to get the blood flow moving so that we can increase all that oxygen and blood to the brain.

[00:10:21] Anna: A physical therapist can provide one-on-one support. They’ll identify what movements can be done at home safely, and which movement should be practiced while in a supervised session.

[00:10:31] Dr. Campbell: Our goal is to make sure that you are gonna be safe at home. So in the clinic, we might do some things that are very challenging to your walking or your balance or your agility.

And then maybe at home, we might give you some things to make sure that we are able to do the exercise we need to do, but in a safe way where we’re not really risking balance, like we might in the clinic.

[00:10:51] Anna: Physical therapy and exercise can take up a lot of a person’s time, but there are also small daily changes you can try to make life a little easier. Dr. Mather shares her tip for getting her day started.

[00:11:03] Dr. Mathur: I find that having a stiff pair of shoes by the bedside helps when I wake up and my feet are curled because of muscle spasm.

[00:11:11] Anna: She also tells us the changes she made to her nighttime routine.

[00:11:15] Dr. Mathur: Sleeping is an issue for a couple of reasons, one it’s insomnia, but the other thing is it becomes difficult to turn in bed. And so I have found having a more slick set of bedsheets, like satin or bamboo and wearing satin pajamas helps me to turn more easily cuz the friction isn’t there and you can also have a bed rail, which helps you to grab onto in order to turn in the bed.

[00:11:38] Anna: Simple suggestions like these can really make a huge difference for people living with Parkinson’s.

In fact, there’s an entire profession focused on helping people develop, recover, or maintain meaningful activities. It’s called occupational therapy.

[00:11:54] Kat Hill: Occupational therapy has been very helpful for me when I was starting to have some trouble with my hands. They had some tools that helped with writing implements, some exercises and stretches, and also a wonderful paraffin bath that I could put my hands in when they were really painful.

[00:12:14] Dr. Brandy Archie: Our job as occupational therapists to help make sure people can be safe and as independent doing all the things they wanna do.

[00:12:21] Anna: That’s Dr. Brandy Archie.

[00:12:23] Dr. Brandy Archie: I’m an occupational therapist and founder at Accessible Living. So we help people get adaptive equipment that they need in order to stay living safely and independently at home.

[00:12:33] Anna: There are some key places, a person with Parkinson’s might wanna consider changing in their home, like the bathroom.

[00:12:40] Dr. Brandy Archie: We’re often recommending shower chairs or tub transfer benches. Our balance is often very impacted by our vision. And so if you’re closing your eyes to wash your hair and tipping your head back, that can really throw off your balance. So let’s have a place to sit down. We can add, grab bars to the bathroom, to help with just having a place to hold onto, to give you a little extra stability.

[00:13:01] Anna: And there are other places in and around the home where safety needs to be considered.

[00:13:06] Dr. Brandy Archie: We wanna be thinking about how you’re getting from place to place changes in floor texture are also ways that people often get tripped up literally, and then also frozen up. So when we’re going from tile in the kitchen to carpet in the living room, that would be a key place where if your toes are not being picked up from the floor, as well as they used to, you could catch your toe there and end up on the floor.

[00:13:31] Anna: It may be a big change to make, but adapting the flooring in your home so that it’s the same in every room can be a big help.

[00:13:38] Dr. Brandy Archie: If that’s not an option, consider adding something at the threshold space, something wide and flat like a metal threshold that can be between both the tile and the carpet. So it’s easily visibly noticeable. So your brain can make the change from how you need to walk on tile versus how you need to walk on carpet.

[00:13:59] Anna: Dr. Archie emphasizes that making changes to your home in the early stages of this progressive condition can be useful too.

[00:14:07] Dr. Brandy Archie: A lot of times, our front steps, the way we enter our homes are not well lit and don’t have places to hold onto.

So at that early onset stage where you might not feel like you need that yet, that’s a great time to plan to add that to your house. I would say, make sure there’s places to hold onto at all of your stairs. And that they’re well lit. You can’t change the world, but you should at least make sure that the place that you live at is as effective for you as possible cause where we spend the most of our time.

[00:14:34] Anna: If you’d like to learn more about Parkinson’s disease, head to healthunmuted.com to find a full list of resources. Including a PDF on the benefits of exercise by the Parkinson’s Foundation and a variety of blogs about managing Parkinson’s symptoms by Kimberly Berg’s Rebel Fit Club.

And you can also find a selection of other podcasts that you may find helpful as you continue to learn more about this disease, such as the Parkinson’s Podcast by the Davis Finney Foundation. To find other people who are living with Parkinson’s join PD Avengers, a global advocacy group .

Alongside building a new exercise routine changing the way you eat can improve some Parkinson’s symptoms too. In the next episode, we’ll talk to Parkinson’s doctors and dieticians about the recommended diets for those with Parkinson’s.

[00:15:22] Christine Ferguson: There is no one diet that’s recommended for Parkinson’s. However, there are two diet patterns that show promise for people with Parkinson’s.

[00:15:32] Dr. Lisk: You do not want to get in the habit of just saying I’m just gonna pop pills for my Parkinson’s disease. There are natural things you could do.

[00:15:40] Anna: Thanks to Dr. La Faver, Dr Mathur, Dr. Archie, Kimberly Berg and Ashley Campbell for their professional expertise and to Wayne Folkston, Jeff Lasley, Kat Hill, and Dr. Mathur for sharing their personal experiences. The Parkinson’s disease podcast is hosted by me, Anna Stoecklein. This show is a part of the Health Unmuted audio library by Mission Based Media, to listen and learn more visit healthunmuted.com and follow our show on your favorite podcast player. And be sure to share this podcast with the people in your life.

 

 

 

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What is Parkinson’s Disease? The basics of Parkinson's Disease: what is it, who is at risk, what are some early signs