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How “a Physical Therapist specializing in Parkinson’s disease changed…saved my life as I know it”

Posted on: January 28th, 2021

This post was written by Valerie Johnson

By Brian George

How a Physical Therapist specializing in Parkinson’s disease (PD) changed … saved my life as I know it.

I was diagnosed with PD a year ago after experiencing symptoms for a couple of years. I am lucky. I seem to be on a slow progression, currently on two medications, both agonists.

From a time before my formal diagnosis, I have understood that exercise is critically important therapy. I was exercising more, but humans are not good at connecting future consequences with immediate actions. I was thinking of exercise today as an investment in a delay in being wheelchair bound in 15 – 20 years. 

Then I got an email introducing me to the MIND (Movement Initiative for the Newly Diagnosed) program, a Parkinson’s Foundation community grant recipient. The initial evaluation and therapy sessions were at no cost, covered by a grant. The email came from Valerie Johnson, PT, DPT, a physical therapist specializing in PD. I had nothing to lose. There were still spots open under the grant, so I signed up. It was perhaps the best decision of my life.

Dr. Johnson through her practice, Balance Therapy LLC, proved to be fantastic in many ways. She is extremely knowledgeable regarding movement exercises specifically useful for Parkinson’s. Like all great physical therapists, Dr. Johnson is a great motivator and a hard task master.

But the most important gift she gave me was a different understanding, on an emotional level, of the value and importance of the exercise in which she was training me. I had many questions regarding the specific benefits of the individual movements and why and how they provided those benefits. She answered those questions in an accessible and useful way. For instance, she summarized that she was “retraining my brain.”

Dr. Johnson’s credibility made her persuasive, and she persuaded me that there were both long-term and immediate short-term benefits to these exercises. The short-term perspective is critically important because it is much more likely to motive action today. Having been “converted” in believer in the benefits of physical therapy across the arc of my Parkinson’s progression, I threw myself into learning the exercises and improving my form, which is critically important.

The results have been immediate. I feel better (more free in my movements) than I have since my diagnosis and will be discussing dropping one of my medication at my next neurological appointment. I cannot be strong enough in my recommendation to seek out Dr. Johnson, or physical therapy. The education in exercise technique is immensely valuable. The gift of a transformed mindset regarding real engagement in that exercise is priceless.

Learn more about the benefits of physical therapy to help manage Parkinson’s symptoms. For a physical therapist referral or to learn more, call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Pilates Exercise for Parkinson’s Disease

Posted on: July 15th, 2019

This post was written by Valerie Johnson

By Valerie Johnson, PT, DPT and Chrystal Kafka

Is Pilates good for Parkinson’s you ask? The answer is… Sometimes.

I’ve teamed up with the wonderful Chrystal Kafka to tackle this Pilates/ PD predicament. She is a Pilates instructor who also has Parkinson’s disease. As a Parkinson’s physical therapist and Pilates instructor myself, we can help you optimize your exercise program with a modified Pilates practice for PD.

We’ve applied PD-specific, research-based exercise principles to Pilates to help you maximize the benefits of your practice, drive back, and stave off your PD symptoms. If you are a fan of Pilates, there are special considerations for Parkinson’s. Sit back, take a deep, diaphragmatic breath and learn from the pros.

No single exercise program can check all the PD boxes. This is great, because with the amount of exercise people with Parkinson’s need, variety and choice is a plus. Exercising good PD-specific exercise principles is important when practicing Pilates. For people with Parkinson’s, there are some Pilates exercises that you should avoid and others on which you should capitalize. Furthermore, Pilates instructors are not given extra training in teaching people with PD. Therefore, it is helpful for you to know some simple Pilates do’s and don’t’s so that you can advocate for yourself and reap all the benefits of exercise for PD.

Before we dig deeper into this subject. Remember to check in with your Parkinson’s physical therapist every 6-12 months to keep tabs on the quality of your movements and your PD symptoms at bay. Pilates should be considered one of your exercise maintenance programs between stints of physical therapy and not a substitute for it.

Find a Parkinson’s Physical Therapist in your area here.

1. Building Neuro-pathways

Now THIS is where the magic happens for people with Parkinson’s disease. Pilates is known for its positive effect on a person’s physique. But let’s take a moment to consult your inner nerd and consider its effect on the brain. Pilates involves whole body coordination and timing, it can be a great tool for re-educating and re-wiring the neural connections in your brain to make movement easier. Focusing your attention on executing simultaneous trunk and limb movements required for Pilates carries over into your daily life activities.  For example, this skill enables you to change positions with more ease in bed, in/ out of chairs, initiating walking, and changing directions while walking.

These are transitional movement skills that become more challenging with the progression of PD. However, it is also a skill that you can relearn and maintain with practice. It may seem like you are going to extreme measures, but moving in novel and intentional ways is a fantastic way for your brain to learn new skills and maintain functional mobility. If the movements feel unnatural at first, you are probably doing something right. The goal is to use Pilates and other forms of exercise to get your brain’sattention, and then keep it by practicing over and over with effort!  

2. Stretching Beyond Your Perceived Limits and Building Body Awareness

 The very nature of Parkinson’s disease robs you of your ability to accurately perceive the quality of your movements. Larger and faster movements are challenging for people with Parkinson’s because the disease interferes with their ability to know if they are moving adequately. Building body awareness is 90% of the battle for people with PD. Pilates has moving and stationary straps, bars, handles, and platforms that can provide support and feedback while you intentionally stretch beyond your perceived limits. 

3. Exercising Alone is Lonely

Remember, your brain gets a boost when the activity is fun, fabulous, and social. Not just that, but work out buddies compel you. Encourage you. It’s an amazing phenomenon that I’m sure you’ve witnessed and is too important to disregard. Working out with a Parkinson’s pal is even better, so if you don’t have any, Pilates could be a great opportunity to partner up with another exerciser with Parkinson’s. We know you aren’t alone in your fight against Parkinson’s, and you don’t have to be. In summary, your Pilates practice should feel more like a dance party and less like an individual sport.

With this in mind, at-home fitness videos may not be the best choice for people with Parkinson’s disease. As part of your overall PD fitness program, try setting up Pilates with a certified instructor to cheer you on and help you maximize all the amazing benefits Pilates has to offer. It is more advantageous for persons with Parkinson’s to rely on a certified Pilates instructor to give you visual, verbal, auditory, and hands on feedback, especially if you are new to Pilates. As you gain experience and improve your ability to perceive your own movements, you can graduate to duets, trios, or classes with occasional privates to keep your movements and body awareness on point. Pilates duets and/or group equipment exercise classes great ways to work out in the company of friends.

4. Breathing

 Sounds simple enough, right? Diaphragmatic breathing is a complex subject and is invaluable to people with Parkinson’s disease. Pilates is a mind/ body exercise, meaning the goal is to use your breath as a guide for your movement. For example, you inhale as you expand your body and exhale as you contract your body. It’s good to challenge your brain to plan and execute movements while breathing at the same time. Additionally, deep inhales and prolonged exhales are an effective way to calm the nervous system and help you relax, which primes the brain to better learn new movement skills. Utilizing breath is a wonderful way for anyone to stay present and on task, and people with Parkinson’s get a brain boost from breathing intentionally.

While shallow breathing can promote body tension, deliberate and deep breathing can make movement and speech feel more automatic and add some much needed pizzazz to your movements. Vocalizing your exhales with a sustained vowel sound. Perhaps and easier way for people with Parkinson’s disease to promote relaxation, rhythmic breathing, and diaphragmatic engagement is by vocalizing sustained “SSSSSSSSSS” sounds with every exhale.

Pilates is a whole body exercise program, meaning it engages multiple muscle systems at once. It’s good for your Parkinson’s brain to practice using multiple muscle systems simultaneously, just as you need it to do in daily life. By using the muscles required for speech, breathing, posture, and limb coordination all at once, Pilates can help person’s with Parkinson’s power through life with more finesse.

5. Lengthening and Strengthening- Building muscle strength, upright posture, and range of motion.

Now, this is where it gets tricky. Pilates can be a great tool to hit PD right where it hurts by targeting the muscles that get overly tight and weak. However, without the proper PD-specific exercise precautions and a practitioner who specializes in PD, Pilates can strengthen and stretch the wrong muscles and perpetuate the symptoms and progression of PD such as stiffness, slowness, and stooped posture. 

The goal with any PD specific exercise program is to stretch and open up the muscles in the front of the body and strengthen the muscles in the back of the body that hold our posture upright against gravity. Additionally, spine flexibility and core strength are vital if you want to move with more ease and preserve your upright posture. All of these components of movement can be well addressed with an informed PD-specific Pilates practice.

In Pilates, there can be too much emphasis on front body muscle contractions (think classic “Hundred” exercise in the warm up. It is the exercise I’m demonstrating at the photo). This makes the muscles in the front of the body overly strong and tightly bound. People with Parkinson’s already have a tendency to be too tight and strong in these muscle groups, especially in the hip flexors, trunk, pecs, and shoulders. Contracted and tight muscles in the front of the body can promote rolled shoulders, forward head, forward chin posturing and neck tension, and result in, you guessed it, more stooped posture.  

6. Keeping It Snappy

Movement timing is important and degenerates with the progression of PD. For example, simple movements such as walking and swinging your arms requires an internal sense of rhythm. Traditionally, Pilates is not performed to music or sounds. However, for people with Parkinson’s disease, adding rhythmic cues such as music or a metronome could set you free

7. Finding Cardio in Your PD Workout Regime

We know that cardiovascular exercise increases blood flow to the brain and ignites its attention and memory centers. It’s important to balance your PD exercise regime with cardio. This makes it easier for you to learn and keep new functional movement skills.

If you are familiar with Pilates, the Pilates jump board is one way to bring in cardio. However, we do not recommend jump board activities for PWP, especially while laying on your back, as these exercises can promote muscle tension and foster rigidity for people with PD. Keep in mind, if you aren’t getting enough cardio from your Pilates program, you need to get it from another exercise mode you love such as running or cycling, etc.  

There you have it. This article should be considered a broad heads up and not a comprehensive guide for Pilates for PWP. If you have any further questions or concerns, please feel free to contact me.

Valerie Johnson, PT, DPT

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