“i Have Parkinson’s disease… now What?”

- by Melani dizon, director of education & Content, d avis Phinney foundation for Parkinson’s -Condensed, modified, and presented by Matt Heintzelman (CsCs , TsaC- f), Owner of Titan Tactical strength and Conditioning

Parkinson’s is a complex, progressive, and incurable neurodegenerative disease that can affect almost every part of the body, ranging from how a person moves to how they feel, think, and process. It’s a disease that starts very slowly and results in the accumulation of a protein called alphasynuclein that misfolds within the nerve cells and reduces dopamine-producing nerve cells (neurons) deep inside the brain. Dopamine is a neurotransmitter that helps regulate the body’s movement and initiation of movement. Less dopamine in the brain means less control over movement and less mobility in general.

Parkinson’s is second only to Alzheimer’s as the most common aging disorder of the brain and is more common than multiple sclerosis, muscular dystrophy, and amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease) combined. Less than 7-8% of cases can be attributed to genetics. Most of the time, people living with Parkinson’s have susceptibility genes that get kick-started by environmental factors, infections, head injuries, and more. That said, there is no single cause of Parkinson’s or predictor of who will get it, and no two people experience Parkinson’s in the same way or along the same timeline. There’s a common saying in the Parkinson’s community that if you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s. Meaning, it’s very possible that we can work with five Parkinson’s athletes, and all of them will present differently.

As early as 10 years ago, doctors told people diagnosed with Parkinson’s to rest and take it easy. Now, with the research we have about the value of exercise for people living with Parkinson’s, physicians are sending their newly diagnosed patients out the door with a prescription to exercise.

Getting started can feel daunting for new people who walk into our facility. Now, add the fact that this person just received a diagnosis of an incurable, degenerative disease that primarily impacts movement, and you can add scared, anxious, frustrated, and uncertain to the mix.

The good news about getting a Parkinson’s diagnosis today is that more treatments exist than ever before. From medications to surgical therapies like deep brain stimulation (DBS), nutrition, exercise, complementary therapies, and more, there are actions people can take every day to live well with Parkinson’s. The big three we’ll focus on here are Medications, Nutrition, and Exercise.

Medication

The gold-standard medication for people with Parkinson’s is Carbidopa/Levodopa (C/L). Dopamine agonists are also very common, especially for people who receive their diagnosis at a young age. While knowing about all types of medication is not essential, knowing how C/L works and what it does for people with Parkinson’s is a great start.

The brain’s circuitry damaged in Parkinson’s is called the basal ganglia. Dr. Cherian Karunapuzha from the Meinders Center for Movement Disorders in Oklahoma City likens the circuits to a switch box that codes for our movements. When the thinking part of the brain decides it needs to do something — like reach out for a dumbbell — the planning part of the brain decides to do this and relays the information to the switch box. The switch box then does two things:

I1. t switches on all of the relevant programs needed to kickstart the activity.

I2. t switches off all of the unwanted things that should not be happening while you reach for the dumbbell. For example, you shouldn’t be tremoring, stiff, slow, or rigid when you reach for the dumbbell. When the switch box is working well, an undamaged brain will quickly switch on and off all of the relevant programs and relay that information back to the part of the thinking brain that channels it down your spinal cord/nerves/muscles, and you act out the movement. In Parkinson’s, that circuitry is damaged and inhibits your ability to switch on all of the relevant motor programs in a timely manner. So, what happens? You still do the movement, but it’s in slow motion. Simultaneously, you also can’t shut off things in a timely manner. As a result, a tremor may start, posture may stoop, balance is compromised, etc.

The unique thing about the circuit that’s being damaged is that the nerves that are operating within the circuit require a particular chemical to crosstalk or communicate. That chemical is dopamine. The problem comes because the nerve shooting out dopamine and the nerve receiving dopamine are differentially damaged. This means the one shooting out dopamine gets damaged first, and the one receiving it gets damaged over time. So if you can somehow introduce dopamine from the outside, the nerve receiving the dopamine can be switched on, allowing you to kickstart the circuit again.

Since C/L is external dopamine, most people living with Parkinson’s take it. What’s important to know is that sometimes it doesn’t work.

When someone starts to experience Parkinson’s motor symptoms, there are usually enough healthy nerves that whatever dose of C/L they take, it keeps recycling it; it reabsorbs back into the nerve and then shoots it out, over and over again. In these early stages, they get a pretty smooth effect. The downside is, as their Parkinson’s progresses, their nerves get more and more damaged, and the worse they get at recycling dopamine. The meds get leaked out more easily, and they experience what is referred to as OFF times. OFF times are when Parkinson’s medications aren’t working optimally, and motor and non-motor symptoms aren’t under control. As Parkinson’s progresses, individuals have to take more and more C/L to manage symptoms, and the window of relief gets shorter and shorter.

It’s important to note that OFF times look different for everyone. For some people with Parkinson’s, OFF means experiencing reduced mobility, increased tremor, muscle cramping, rigidity, slowness, balance issues, stiffness, shortness of breath, and/or swallowing issues. Feeling OFF may also worsen non-motor symptoms and cause fluctuations in cognition, attention, anxiety, depression, and apathy. Being OFF may also cause a person with Parkinson’s to experience increased sweating, lightheadedness, abdominal pain, bloating, urinary issues, visual disturbances, pain, dysesthesia, akathisia, and/or restless legs syndrome.

Many people with Parkinson’s have learned how to time their medication so that when they show up for a ride or exercise class, their meds kick in at the right time to help them get through the workout safely and comfortably. However, OFF times can be unpredictable for various reasons, so while we may have an individual that may be ON the majority of the time, if we see them and their Parkinson’s is more visible than usual, it’s usually because their meds aren’t doing their job. In these cases, it’s important to adapt training to meet them where they are at that moment.

Nutrition

Most people with Parkinson’s have done their fair share of experimenting with different nutritional protocols to see what works best for them and gives them as much symptom relief as possible. There are a couple of things that are important to know regarding the topic of nutrition.

Hydration - Regarding medication, levodopa is not metabolized in the stomach; it’s metabolized in the first part of the intestine. This means anything taken by mouth has to make it to the first part of the intestine to absorb/ work. Therefore, people with Parkinson’s should ALWAYS take their medicine with a full glass of water to flush it down. This is not something all doctors tell their people with Parkinson’s, yet it can be the difference between total symptom relief and none. Drinking water also helps with constipation, which is one of the most common and frustrating symptoms of Parkinson’s. We encourage our athletes to bring water to workouts and to drink throughout.

Protein - Since eating adequate amounts of protein to build lean muscle mass is a key part of most typical nutritional recommendations when related to exercise, it’s important to know that protein interferes with the absorption of levodopa. The amino acids from protein look very similar to levodopa as viewed by the gut. Since the gut has specific channels through which amino acids can be transferred, if our athlete eats a burger patty and then takes their levodopa, their gut can’t filter everything through the gates to the intestine, leading to interference in the absorption of levodopa. This lack of absorption of levodopa can lead to OFF times in many since the protein essentially blocks their meds. Therefore, the best practice for people with Parkinson’s who take C/L is to eat one hour before taking their medications or two hours after taking them, especially regarding protein.

exercise why People with Parkinson’s MusT exercise

As mentioned earlier, people newly diagnosed with Parkinson’s used to be told to rest and take it easy. Today, doctors who truly understand the disease tell their patients the exact opposite: exercise daily, intensely, and as often as possible. And, if you can, do it with others.

For people with Parkinson’s, regular exercise can:

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• mprove mobility and coordination

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• oost mood

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• educe stiffness and tremor

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• inimize soreness and fatigue

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• mprove cognitive function

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• mprove gait and balance

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• educe sleep problems

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• educe postural instability

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• rovide a critical social outlet

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• nd it may even slow down the progression of Parkinson’s itself.

“The adverse effects of inactivity include cardiovascular disease, osteoporosis, insomnia, cognitive decline, depression, constipation, and all lead to early mortality. All of these are risk factors when you have Parkinson’s, so if you are both inactive and have Parkinson’s, your risk of early mortality is higher.” – Professor Bas Bloem, Medical Director and Neurologist at the Parkinson Center, Nijmegen, Netherlands

The recommended guideline for people with Parkinson’s to experience the benefits of exercise is to engage in a minimum of 150 minutes of moderate physical activity per week or 75 minutes if it’s high-intensity exercise. That said, here are a few things to keep in mind for Parkinson’s athletes:

Something is always better than nothing. If you come into the gym but are feeling OFF, are moving slowly, and didn’t sleep the night before, any movement you do for that hour is a victory.

High-intensity exercise (or ~80% of max heart rate) is better than slow and low. When it’s safe for you to do so, you will get more bang for your buck as the intensity rises.

You will likely reach the “too much exercise” threshold before your non-Parkinson’s peers will. The worst thing that can happen to someone with Parkinson’s is they get too tired or too hurt to exercise. We challenge our athletes to reach their volume, intensity, and strength goals but work with them to reach the level that’s optimal for the day they’re having.

Based on these recommendations and the fact that endurance, strength, intensity, and balance are critical domains for people with Parkinson’s to concentrate on to help with their motor and non-motor symptoms, exercise can be magic.

PWr!moves

PWR!Moves was created by neuroscientist and Parkinson’s exercise specialist Rebecca Farley of Phoenix, Arizona. The program is structured around four foundational elements of exercise to counteract bradykinesia, rigidity and incoordination that interfere with everyday mobility. The classes are designed to help people at all stages of Parkinson’s disease using PWR!Up to reduce falls and step bigger, PWR!Rock for weight shifting and to widen base of support, PWR!Twist using trunk rotation to (continued on page 22)

(continued from page 21) reduce rigidity, and PWR!Step to improve transitions and balance. In this program, we also work on cognition, voice activation, and activities of daily living. rock Steady Boxing

Rock Steady Boxing (RSB) was founded by Greg Newman, a prosecutor from Indianapolis, Indiana, who was diagnosed with Parkinson’s disease in his early 40’s. A noncontact boxing workout, RSB is based on medical research that has shown that “forced intense” exercise can reduce, reverse and delay Parkinson’s symptoms. These training classes are meant to help improve agility, mobility, balance, stamina, strength, accuracy and hand-eye coordination, while also creating a sense of community.

neuroplasticity

Neuroplasticity is the ability of the nervous system to change its activity in response to intrinsic or extrinsic stimuli by reorganizing its structure, functions, or connections after injuries/diseases.

According to Mike Studer, a physical therapist who specializes in working with people with Parkinson’s, the main reason for prescribing exercise for people with Parkinson’s is so they can take action to slow the disease process, preserve what they have, and make connections that are often left off the table because of learned nonuse.

Learned nonuse happens when a person gets a diagnosis of Parkinson’s, and because of the stories they start telling themselves, they stop engaging in life. They stop taking 10,000+ steps daily, climbing stairs, trying to balance without a walker, etc. They deem themselves “sick” or incapable, and pretty soon, they are. If they don’t challenge those facets of endurance, strength, and balance, neuroplasticity gets left on the table.

Falling, exercise, and Parkinson’s

The most common reason people with Parkinson’s are admitted to the hospital is due to falls.

Falls are a significant cause of disability, loss of independence, and reduced quality of life for people with Parkinson’s. Approximately 45-65% of people with Parkinson’s fall annually, and 50-85% fall regularly. Falling can lead to fear of falling, which limits their desire to be active and impacts their ability to mitigate symptoms with exercise, restricting activities of daily living (ADLs), resulting in learned nonuse, and higher levels of injuries.

Think about all of the things we draw on in those split seconds before a fall:

Foundationalelements

•PWR! UP -antigravityextension

•PWR! ROCK -weightshifting

•PWR!TWIST -axialmobility

•PWR! STEP -transitionalmovement training