Chapter 8

Getting Started and Sticking to it

Getting started with exercising is the key to success and it’s far MORE than half the battle. Speaking from personal experience, I know all about putting off workouts and not getting started. I’ve done it more than I care to admit, but here’s the deal: if you don’t start doing something, you’ll never realize any positive results. Add complications of Parkinson’s disease into the mix, and the will to work out and get started can be exponentially more challenging.

In this chapter, you’ll hear from three of the most amazing movement specialists I have ever met. Each has a unique approach geared towards implementing exercise into the lives of their clients. As you’re reading through this chapter, don’t be afraid to put down the book and try every exercise you read about. You might discover exercises you can easily do and like to do!

How Behavior Change Strategies can become a Game Changer for PD patients or clients by Friederike Aprea

3 practical strategies you can try right away

As discussed in this book, exercise in general can help people with PD to improve their quality of life. This especially holds true for corrective exercises that can help improve posture. According to recent studies, posture can influence our physical as well as our mental health. A long-term forward head posture can not only lead to neck and back pain but can also trigger depression. Unfortunately, depression itself can increase a forward head posture even further. It’s a vicious cycle, especially considering that depression is the number one non-motor symptom of Parkinson’s disease and that patients suffering from it also have a natural tendency to lean forward as a guarded or protective mechanism.

What does all this have to do with behavior change? As a trainer, I use behavior change principles to increase program compliance. Corrective exercise programs can only be successful if clients execute them on a regular basis for a long enough period to make a difference. Many people can’t afford to see a trainer 3 or 5 times a week, so I rely on them to do their ‘homework’ to achieve optimal results. However, most clients are not too excited to follow a home exercise program and often come up with excuses why they cannot do the prescribed exercises. The number one reason we hear is lack of time. The second most quoted reason is that clients don’t remember what they were supposed to be doing and how. And the third biggest obstacle is low self-efficacy when it comes to exercise, i.e. one’s own belief in being able to perform a given task.

This is where my ‘behavior change toolbox’ comes in handy. When the time argument comes up, I will give them a program that they can complete in 5-10 minutes, and sometimes even less. Everybody can make that happen. Apart from that, we decide a concrete time of the day when they will do the exercises. Ideally, it will be the same time every day in order to create a habit. It can also be tied to another daily task such as timing of taking medications, which often-times applies for clients with Parkinson’s disease. Apart from that, I choose very simple movements to start with such as a Brugger’s exercise for improving posture.

Using easy movements will not only minimize the risk for injury, but also improve the clients’ confidence in their ability to perform their exercise program. For anybody new to exercising we will start with only 1-2 homework exercises. This approach helps to get people started and to change beliefs that may be associated with the concept of ‘exercise’, i.e. that it is exhausting, time-consuming, only for young people, only for somebody that is in shape, healthy, etc. Once this first step is taken and exercise becomes a habit, we can increase frequency, duration, and difficulty of the program.

Action point for clients #1: Even if you always thought that ‘exercise is just not for you’, pick just 1 exercise and try to incorporate it into your daily routine. Stick to it for at least 21 days and you might recognize that it becomes second nature, like brushing your teeth or taking a shower. If you have any posture or neck issues, you can pick one of the exercises below:

As mentioned earlier, another big obstacle for compliance is that patients or clients are often overwhelmed with how to execute the exercises given to them. I must admit that whenever I went to physical therapy myself and was given a set of homework exercises, I often forgot half of them the minute I reached my car. Much like the support website that accompanies this book, I personally provide my clients with either printed handouts or exercise videos that leave no questions regarding how, how often or when to do their exercises. Ideally, I provide clients with a calendar attached to the exercise handout and often use an app to capture their feedback. This not only makes it easier for me to help them but makes it more engaging and rewarding for them. Clients often report that logging of the reps and sets on paper or virtually gives them a goal and feels like checking off items on a ‘to-do list’. We also know from behavior change research that people who track their progress and give feedback on a regular basis will have better program outcomes than people who don’t document what they are doing.

Action point for clients #2: ask your trainer / healthcare professional for detailed exercise instructions, ideally including pictures or videos. Document whenever you exercise and be as precise as possible, i.e. write down the exact repetitions, sets or time of the performed movements. I promise you it’s very rewarding to look at this ‘log’ and helps to create a sense of accomplishment.

Another very powerful behavior change principal is education. The more a client or patient understands the ‘why’ behind doing each exercise, the more their motivation is likely to shift from being extrinsic (externally driven) to being intrinsic (internally driven). That’s why I will take as much time as possible explaining all potential benefits of an exercise, from physical to mental. For example: if you know that a certain stretch will not only help you improve your posture, but also your breathing, your mood and even your longevity, it’s much more likely that you will do it.

Action point for clients #3: Try to research as many benefits about exercise in general and specifically about the exercises you choose to do for the next 21 days. Think about these benefits every time you are doing your program. It might help to change your internal dialog from ‘I have to get done with this’ to ‘what I am doing now is good for me’.

In conclusion, behavior change strategies are likely to increase compliance to exercise programs, which will have a direct impact on their posture and overall health.

At the same time, there is an even bigger benefit for any person with PD that can be achieved through successful compliance to an exercise program. With simple exercises that can be completed on their own, we can help to put them back into the ‘driver’s seat’. Focusing on these small, easy lifestyle changes will help them towards improving their well-being. While this may sound trivial, the overwhelming news of a Parkinson’s disease diagnosis can turn your life upside down. Focusing on the things you can control is very beneficial. Controlling the ‘controllable’ is more empowering than being worried about all the uncontrollable variables that accompany any kind of disease.

Exercise Snacking: Get fit with bite-sized exercise bouts by Russ Parker

Many are aware of the benefits of exercise, but they encounter barriers to getting started and implementing an effective exercise program. Often these barriers are perceived as “showstoppers” resulting in no exercise being performed at all. Some of these barriers are:

• Education – Lack of knowledge on what exercises to include, how to perform them properly and how to structure a program to meet fitness goals.

• Not enough time, scheduling conflicts – Perception that there is never sufficient time on any day at any time to fit in any exercise that will result in significant health benefits.

• Too tired, not feeling well, lack of motivation – When feeling not quite 100%, the prospect of motivating yourself to attempt working out can be daunting. There are times when you are truly too sick or physically drained and rest is in order. But there is also a misconception that a little fatigue, some minor stiffness or a little malaise prevents you from exercising.

• Not convenient – the need for access to gym and equipment. The necessity to travel, change clothes and take a shower is time consuming and may be cumbersome for a person with a movement disorder like Parkinson’s Disease.

By using a methodology referred to as “exercise snacking”, you can simplify the task of performing daily exercise, and help to overcome some of the aforementioned barriers. Exercise snacking is a method of structuring exercise into short bouts throughout the day using exercises that are simple, safe, convenient, and requiring little or no equipment. This structure makes it easier to fit exercise into your schedule and doesn’t require a gym membership. This methodology can also be used by people who are able to regularly perform several workouts throughout the week, but on occasions encounter situations where it is difficult to fit an extensive workout into their schedule.

Health benefits and management of movement disorder symptoms can be gained in a relatively short 20-minute period, but also in as little as 20 seconds. This can be done with a wide variety of exercise modalities such as:

  • Cardio
  • Balance
  • Flexibility/Mobility
  • Strength training
  • Speed, Agility, Cognitive/multi-tasking training
  • Mind-body

Here are some scenarios where you can fit in some exercise snacking:

  • Around the house, at work, waiting for an appointment, or waiting for activities to commence, etc.
  • In transit – On the plane, mass transit, in the car
  • On vacation, leisure activities, at the park/beach, social gatherings, shopping
  • Interspersed with daily routine or turn a daily chore into an exercise
    Exercises can be performed with just your bodyweight utilizing whatever existing structures, equipment or common objects are at your disposal. Some examples:
  • Use chairs, stairs, walls, doorways, the floor, and countertops to provide different levels of difficulty, stability and as obstacles
  • Resistance bands, weights, balls, and other small/convenient fitness equipment
  • Tape – Use tape on the ground and walls for physical or visual targets in balance, agility, speed and other exercises
  • Balls – For resistance, agility, and athletic activities
  • Towels – Towels can be whipped around in various patterns to encourage fast, powerful movements and get your heart pumping. They can also be used against a smooth floor (e.g. wood) or wall and used to slide your hands or feet back and forth on the surface as a strength and/or heart pumping exercise
  • Plastic plates – Use for sliding on a carpet
  • Containers, bottles, cans, backpack/suitcase – can be used as weights. Bottles or other containers can be filled with water or sand, and can be shaken rapidly to elevate your heart rate

Here are some examples of exercise snacks:

  • Core/lower back/gluteals – try plank progressions, Ab, and rotational exercises. These can be performed on the floor, sitting, or standing using just your bodyweight. The bird dog is a great core and hip stability exercise. A standing palloff press using a resistance band is a versatile core exercise.
  • Flexibility – try a hamstring stretch while seated. In the shower, when reaching across to wash the upper back area from just below the neckline to shoulder, pull on the elbow with opposite hand to perform a shoulder stretch.
  • Warmup/mobility – friction massages on boney areas around joints help to increase blood flow and improve mobility. Bouncing and dynamic movements can be done from a chair or standing. A countertop, doorway, wall, or chair back can be used for stability.
  • Finger and hand exercises can be easily performed anywhere (e.g. sitting in your plane seat) and are great for dexterity.
  • Upper back, shoulder, and neck posture – the cobra and chin tuck exercises can be done sitting, standing or on the ground.
  • Balance – Standing and balance progressions can be done anytime and anywhere. Practice standing on one leg. Hold on to something for stability if needed
  • Arms/chest – try push-up variations. You can also squeeze a ball with two hands to activate chest muscles.
  • Legs – Squats, lunges, bridges, step ups on stairs, hip hike, can all be done using just your bodyweight.
  • Agility – Move in a box pattern around a chair or other object, forward, backward, and laterally. Go as quick as you can while still being safe. Perform a short dance routine.
  • Play catch with yourself – Throw a ball against a wall and catch it. Add multi-tasking work by stepping back and forth over a line. Then add to that, cognitive work (spelling words backwards, counting by sevens etc.).
  • Cardio – try rapidly pumping your arms, brisk walking, running, punching, running in place, rapid marching in place, jumping rope, going up and down stairs.
  • Push-aways – repetitively push explosively off a wall, ground, or stair. If you don’t like running, you don’t necessarily need a treadmill or exercise bike to get in some cardio.

Here are some daily activities that make great functional exercises:

  • Shampooing – While washing your hair make it a manual dexterity exercise. Massage scalp in a variety of patterns. Back and forth, circles, alternating hands, one hand at a time, clockwise, counterclockwise etc.
  • Watch T.V. from the floor – You will invariably have to periodically change positions, engaging many muscle groups to do so. Find opportunities to do other things on the floor, too.
  • Roll on the floor – Rolling is a great exercise and important for mobility in bed. Do it with the kids or grandkids!
  • Getting up from a chair and the ground. Instead of doing it just once, take a little extra time and do it multiple times. If having difficulty, get up from a higher platform (e.g. sofa arm instead of a chair) or have an object to grab or push off of for assistance. To make it harder, try getting up pushing off with one hand, then try using no hands.
  • Suitcase carry – This improves your core stability. When walking, carry your backpack, briefcase, pocketbook, tote bag, suitcase etc. in one hand. Make sure you maintain an upright posture. Use your core muscles to prevent the weight of the bag from making your upper body tilt sideways. Switch hands periodically to work both sides.
  • Make daily activities and chores more challenging – Use an ax and hand saw instead of a chainsaw to cut tree limbs. Try using your non-dominant hand for some tasks.
  • Walking and stair climbing – In your daily routine, look for opportunities to do some extra walking or stair climbing.

Regular exercise will help you move better and enhance your quality of life. However, to reap these benefits, understand it’s not an all or nothing approach. If you can’t get in your 30 minute or 2-hour workout, you still can get in some productive work in a matter of seconds or a few minutes via exercise snacking. And for the person new to exercise, these short exercise bouts will help stimulate your appetite for more.

Parkinson’s Play by Jackie Wu

PLAY is an interesting concept. It’s incredibly useful, although not commonly practiced. It’s popularly viewed as either a children’s activity, or sport-specific activity. There needs to be some type of competition in order for adults to PLAY. But the thing is, PLAY is very necessary for human development, from the most basic, primal standpoint.

To get a more objective view on PLAY, let’s first look at the animal kingdom. Animals PLAY starting from the moment they can control their limbs. Animals will continue to engage in things that are attractive to them, i.e.: things that spark curiosity and have positive stimulus. In fact, if you’ve ever had the pleasure of having a pet, you’ll likely know that you can measure the health of an animal by its desire to PLAY.

Humans are the same way. Babies learn how to roll, crawl, sit, and walk because of things that entice them. Feeding curiosity is a great way to motivate. They will continue to learn various ways of moving by PLAYing, feeding their curiosity in a fun way. PLAYing gives them a positive reward (hello dopamine!) for being curious, encouraging them to continue PLAYing. As an added bonus, curiosity may increase the production of T-cells, meaning the immune system is strengthened just by the wondering and exploring of the mind. In addition, curiosity may boost learning and memory. Learning to PLAY by oneself and be interested, captivated, or entertained by almost anything is a great way to increase the skill of curiosity. Explore everything.

Try it! Grab a pen/pencil. What are all the different things you can do with that pen/pencil? Explore each part of the pen/pencil, try out your ideas. See if you can come up with at least 10 things that you can do with a pencil! Grab a piece of paper and write them down as you go.

Notice: If you have Parkinson’s, did you see your handwriting improve between #1 and #10? Did you notice a calmer sense of control, even if it was slight? This is just a small example of how quickly you can improve your symptoms with mental PLAY. You can do this anywhere, with anything, even with your hands and fingers while waiting in line or sitting in a car.

PLAY stimulates the body and the brain in a way that no other activity can. It is the fastest-known way of learning, and the most enticing. It’s fun and can be done in almost any situation. It’s disturbing to me how society has almost disallowed adults to PLAY when it’s so good for them!

With the recent confirmation that brain neuroplasticity is a fact, rather than just theory, I hope that PLAY becomes more widely accepted amongst brain-body improvers (i.e., therapists, medical/health professionals, etc.) as a useful tool to help their patients. And once that catches on to become mainstream, I hope that the average human will know that PLAY at any age is extremely helpful to live a fulfilling, engaging, and healthy life.

In the Parkinson’s population, it’s known that depression is the #1 non-motor symptom, and with that, withdrawing from social interaction is common. It’s like the question of the chicken or the egg – which came first, depression or social withdraw? It can become a vicious self-feeding loop. But in order to break the cycle, you must do something that is sustainable. In order for something to be sustainable, it must be engaging, interesting, and positively reinforcing to the person. Coincidentally, these are all qualities of PLAY. One can PLAY by himself, which could help with the depression in general, and help to be more open to PLAYing with others. However, for many people, it’s harder to get that initial motivation to break the cycle (potential vs. kinetic energy Law of Physics), so a great solution to that is PLAYing with a friend! Once that PLAY seal has been broken, it’s much easier to continue the motion of PLAYing, whether it’s with a friend, or by oneself.

PLAYing with a friend provides companionship and positive energetic transfers. It’s the whole reason why we have friends in the first place. It also provides accountability, which is really helpful for those who are in such a slump that they need a friend to drag them out of that depressing slump.

When you PLAY in a group, especially a group of people with a commonality, it provides a sense of belonging – a community. A community creates an infinite well of love, acceptance, and joy for all. When there is a community, people automatically engage and participate, because they now have a higher sense of self and purpose. They’re no longer just doing it for themselves. They’re doing it for the community. Interacting with that community in PLAY makes the entire experience even better for the brain. It ties in physical and mental improvements with emotions, self-esteem, and accomplishment.

Notice: Remember a time where you did some fun activity by yourself that you could have done with someone else but didn’t. It could have been a hike, arts & crafts, sports, or anything of that nature. Think about how you felt. You may have had some peaceful fun. Maybe it was a bit meditative. It may have been some good alone time. Now, remember a time where you specifically spent some fun time with a friend doing that same (or similar) interactive activity. Think about how differently you felt doing the fun activity with a friend. There’s a different type of energy that you get from interaction with another person. That type of energy is what can bring you out of a slump and keep your spirits up, even if it’s only temporary. Remember, a frequent string of temporaries can have a lasting effect!

By the way, if you want to call up a friend to meet up later at this moment, feel free to do so. Bookmarks exist for a reason. This book will still be here when you get back!

The reactive component of PLAYing (more-so with others than with self because of the level of predictability) allows the brain to have to pay attention to be able to react and adapt to the stimuli it’s being presented with. It’s a safe way of presenting “danger” or uncertainty, which is another very quick way that the brain learns. The phrase “the greater the load, the greater the learning” is used in the world of physical training but can be used to a limited degree when applied to a therapeutic standpoint.

What I mean by that is, if a person is already under a great amount of threat (as in, the brain doesn’t feel safe for various reasons, including the Parkinson’s condition), and if you put too much threat to the body/brain, the nervous system will go into the Fight or Flight Sympathetic mode. However, when small threats are presented under controlled circumstances, the brain gains the feeling of safety, allowing for a higher degree of learning from the small threats.

I should mention that a “threat” is not necessarily a bad thing. It’s a type of stimulus that challenges ones feeling of safety and elicits an automatic response. If someone is under constant threat, for example a Person with Parkinson’s with the symptom of unsteadiness in the limbs, providing additional threat (like tight rope walking) can be seen as too much. A degree of security or control needs to accompany the level of threat, i.e.: walking on a painted line on the ground. This will make for a more appropriate level of threat and a more reasonable challenge.

I know it sounds counter-intuitive to provide more threat or challenge to someone who is already challenged constantly but finding that “sweet spot” is most crucial in allowing the brain to accept the improvements.

Try it: If you are a Person with Parkinson’s (PwP), walk down a hallway first to see how you feel. PLAY “Hot Potato” with a balloon (a ball may be too heavy and require too quick of a reaction, so it could be too much “threat,” but you can work up to it!). Get a balloon or a crumpled-up piece of tissue/paper towel – something light. Throw it up in the air and keep it up in the air without catching or holding onto it. See how many consecutive times you can do it in 5 minutes (you don’t need to count if you don’t want to).

Notice: Walk down the hallway again and see how you feel after PLAYing Hot Potato for 5 minutes. Also notice how much you’ve smiled and perhaps laughed while PLAYing with something so simple! 🙂 By the way, PLAYing Hot Potato with more people (and even more balloons!) is rather fun. See if you can gather a few friends to PLAY with!

PLAY is an automatic “sweet spot” for anyone. It’s an activity that is safe and that can be altered for degree of difficulty and can be done every day without a serious need to recover from muscle fatigue. You can stop and start at any time, and you can change it any way you see fit. In fact, the more creative you are with your PLAY, the more ways you decide to vary it, the more brain stimulation you’ll get! If you PLAY, especially games that are neuro-specific, you may become sleepy, tired, thirsty, or hungry (Parasympathetic signs), which means that your brain accepted the challenges you gave it, and it needs some R&R to complete building those neural pathways. So, doing these specific types of PLAY on a daily basis can be extremely good for People with Parkinson’s.

Try it: If you are a PwP, walk down a hallway, write your name on a piece of paper, or eat something from a spoon/fork and see how you feel. Then PLAY the simple game of “Patty Cake” with a friend. If you don’t have a friend handy, you can put a piece of paper with a giant “X” on it on the wall and pretend the upper corners of the “X” are your friend’s Left and Right Hand.

CLICK HERE TO DOWNLOAD THE “X”

Try these variations in order of difficulty. Stop when it gets a little difficult or before you’re tired (meaning, don’t push your limits!):

Simple version: (4-count) Clap, Left to Left, Clap, Right to Right, etc., until someone breaks the order

Intermediate version: (8-count) Clap, Left to Left, Clap, Right to Right, Clap, Double High Five (Both hands straight to Partner’s Both hands high up), Clap, Double Low Five (Both hands straight to Partner’s Both hands down low), and keep repeating

Advanced version: (8-count) Clap, Left to Left, Clap, Right to Right, Clap, Both hands straight to Partner’s Both hands, cross your arms and tap your shoulders (Left hand to Right shoulder, Right hand to Left shoulder at the same time), tap your hands to your same side hips (Left hand to Left hip and Right hand to Right hip at the same time), and repeat

Super Advanced version: (8-count x 4 sets) Recommended to start SLOWLY and with one set (Set 2 is recommended for a practice round) repeatedly until you get it. Then add the other sets as they become easier. Feel free to add other body parts to your liking (like Ankles, Ears, Elbows, Big Toes, etc.)

Set 1: Clap, Left to Left, Clap, Right to Right, Clap, cross your arms Left over Right and tap your opposite CHEEKS (so Left hand to Right cheek, Right hand to Left cheek at the same time), uncross your arms and tap your Same Side cheeks simultaneously, then cross your arms Right over Left and tap your Opposite cheeks again

Set 2: Clap, Left to Left, Clap, Right to Right, Clap, cross your arms Left over Right and tap your opposite SHOULDERS (so Left hand to Right shoulder, Right hand to Left shoulder at the same time), uncross your arms and tap your Same Side shoulder simultaneously, then cross your arms Right over Left and tap your Opposite shoulder again

Set 3: Clap, Left to Left, Clap, Right to Right, Clap, cross your arms Left over Right and tap your opposite HIPS (so Left hand to Right hip, Right hand to Left hip at the same time), uncross your arms and tap your Same Side hips simultaneously, then cross your arms Right over Left and tap your Opposite hips again

Set 4: Clap, Left to Left, Clap, Right to Right, Clap, cross your arms Left over Right and tap your opposite KNEE (so Left hand to Right knee, Right hand to Left knee at the same time), uncross your arms and tap your Same Side knee simultaneously, then cross your arms Right over Left and tap your Opposite knee again

Notice: If you’re a PwP, notice how your walk, writing, or utensil control changed after PLAYing the hand clapping game!

Also, there are songs that can go with each one of these hand clapping games that you could sing with them, or you can make up your own lyrics as well! Singing the songs will make the games more fun and better for your brain, however if it’s too hard, you can just PLAY the clapping games without the songs and they’re still pretty fun that way.

If we look at the well-referenced Maslow’s Hierarchy of Needs (the 5 fundamental “needs” of a human for fulfilling existence and can be found on the book support website), aside from the physiological needs, PLAY seems to fulfill 4 of the other needs.

Safety: PLAY offers physical and mental activity in a safe environment.

Belongingness and love needs: PLAYing with friends allows for community.

Esteem needs: PLAYing results in participants feeling that they’ve accomplished something.

Self-Actualization: PLAY encourages creativity, acceptance of reality, problem-solving, open-mindedness, and curiosity.

So as long as you’re making sure you’ve got the basic physiological things down (which the other contributors to this book will focus more on), just adding some PLAY into your daily life can help reduce any Parkinson’s symptoms you’re experiencing, and increase the quality of your life.

Try it: PLAY for at least 5 minutes a day. Perhaps start with one 5-minute round of PLAY. Then build your way up to 3x/day of 5-30 minutes per round. Make PLAY a normal part of your day, just like you do meals and brushing your teeth!