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.
Here are some of my favorite resources for Parkinson’s disease.Check it out and keep it handy for when you are looking for new ideas to optimize your life with PD. Add any of your favorite PD resources in the comments!
Special thanks to Susie Baxter for collaborating with me on this list!
LSVT LOUD Speech and
LOUD trains people with PD to use their voice at a more normal loudness level
while speaking at home, work, or in the community. Key to the treatment is
helping people “recalibrate” their perceptions so they know how loud
or soft they sound to other people and can feel comfortable using a stronger
voice at a normal loudness level. https://www.lsvtglobal.com/LSVTFindClinicians
Parkinson’s Wellness Recovery- physical therapy
and exercise professionals.
PWR!4Life is a proactive program
that allows you to optimize your brain change (neuroplasticity), brain repair,
and increase your desire to participate in everyday LIFE. Therefore, it should start at
diagnosis and continue “4 Life”!
With early intervention and ongoing programming, you can GET BETTER and STAY BETTER. But better yet, your
efforts may trigger positive brain changes (neuroplasticity) that are disease
modifying and thereby, contribute to slowing the disease progression. https://www.pwr4life.org/professional-directory/
Physical Therapy Specialist– If you are having trouble with low back
pain and/or constipation it may be worth getting an evaluation from a women’s
and men’s health physical therapist. They are the experts in the structure and
function of the pelvis. Provider directory: https://ptl.womenshealthapta.org/#s=1
Project- PVP and it’s affiliates offer therapy, community voice and singing
classes, events, and education. 90% of people with Parkinson’s are
at risk of developing a weak voice that can lead to serious speech and
swallowing difficulties. Parkinson Voice Project’s speech therapy program
addresses these issues. PVP also has online educational webinars covering
various PD topics from experts around the globe. www.parkinsonsvoiceproject.org
Seattle Integrative Health with Laurie
Mischley, ND, PhD
Seattle Integrative Medicine is a private integrated health clinic located just west of Northgate in Seattle, Washington. We offer whole person care and consultations for people with acute and chronic illnesses as well as help individuals take an active role in prevention. www.seattleintegrativemedicine.com
Bent: How Yoga Saved
my Assby Anne Clendening
Every Victory Counts by the Davis
Phinney Foundation- Essential Information and inspiration for a Lifetime of
Wellness with Parkinson’s Disease
Make time to Heal by Bianca Molle’
No Excuses: My Life
with Parkinson’s Disease by Dusty Berry
Optimal Health with
Parkinson’s Disease– A guide to
Integrating Lifestyle, Alternative and Conventional Medicine
The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease by Carol Clupny
Balance Crowd with Valerie
Johnson, PT, DPT from Balance Therapy LLC
Everything About Parkinson’s Disease– a people with PD give each other advice on all things PD.
Mark Burek FB page and founder of Hope
Parkinson’s Women: Offers moral support, encouragement and camaraderie
for women who are Parkinson’s Disease patients.
The intent of the site and Facebook page is not to prescribe medical advice about the diagnosis, treatment, or other medical aspects of PD but to provide support and encouragement for women living with this condition. I hope that the research and information noted in this blog will help you with your understanding and management of the disease.
Peloton- Live and on-demand Stream
Cycling, Running, Bootcamp & Other Workouts
PD Warrior-Youtube and online
membership coaching and exercises. Finding PD Warrior may
be your chance to improve your situation, to move better, think better, look
better, build your confidence. https://pdwarrior.com/
PD School: Laurie Mischley’s online educational course on all things PD and wellness. Highly recommend for anyone newly diagnosed or ready to learn. https://pd-school.teachable.com
Dance for PD- In Dance for PD® classes, participants are empowered to explore movement and music in ways that are refreshing, enjoyable, stimulating and creative. There is an online memberships available for streaming classes. https://danceforparkinsons.org/
Revolution- The premise of Dance Dance
Revolution is to move one’s feet to a set pattern. The song
selection interface of Dance DanceRevolution is a jukebox-like menu of CDs. Players must step to
the beat, matching their beat to the arrows presented to them on screen by stepping
on arrows on a dance stage.You may need to search and watch a
youtube video to understand how to do this.
PWR!Moves Gym virtual classes– guided plans and video library offer a wide variety of class types, intensity levels, and instructors, so you can work out and work toward your personal goals, all while having a ton of fun (www.exerciseforbrainchange.org)
Neurotracker- a cognitive training
program that is designed to improve mental performance. Brain scans reveal
that NeuroTracker training sustainably increases brainwave speeds, associated
with heightened alertness and learning capacity. Peer reviewed research shows
that NeuroTracker training significantly enhances attention, executive
function, working memory and processing speed.
Wii Fit- Contains more than 40 activities designed
to engage the player in physical exercise, which consist of yoga poses,
strength training, aerobics, and balance games. Most activities generally focus
on maintaining COB and improving posture.
Rogue Physical Therapy– Online classes include a variety of PD specific exercise work outs including but not limited to HIIT, dance, PWR!move, Yoga, Brain challenge, cooking, and happy hour! (https://www.roguept.com/rogue-goes-online)
Yoga Anytime- An online membership of unlimited yoga classes to start, inspire, & support your home practice. Discover the benefits of a regular yoga practice with the help of our yoga shows and guided meditations. New classes are added weekly. Streaming available on all devices. www.yogaanytime.com
Boho Beautiful– Free yoga Youtube Channel with a variety of 20 minute classes filmed in a variety of stunning destinations. It’s like your own online yoga retreat.
Dance for PD- Find onsite
affiliate classes near you. Dance for PD offers internationally-acclaimed
dance classes for people with Parkinson’s disease in Brooklyn, New York and,
through their network of partners and associates, in more than 250 other
communities in 25 countries. http://danceforparkinsons.org/find-a-class/class-locations
will ride on a solo stationary bike three times a week. Each one-hour exercise
session consists of a 10-minute warm-up, up to a 40-minute main exercise set,
and a 10-minute cooldown. Rest breaks will be taken as needed. Check with your
local YMCA. https://www.pedalingforparkinsons.org/
Rock Steady Boxing- Non-contact boxing to lessen their symptoms and lead a healthier and happier life. Find a class near you. www.rocksteadyboxing.org
Orange Theory Fitness– One hour, high energy HIIT workouts that are not limited to people with PD. Great for getting your heart rate up for brain change. (https://www.orangetheory.com/en-us/)
Phone APPS for Cognition, Exercise Classes, and Exergaming
Brain HQ- brain exercises
to build your cognitive resilience. 15+ years scientific proof. 40+ Research
studies. 100+ peer-reviewed papers. Real-world benefits. Independently
validated. Courses: Memory, Attention, Brain Speed, Intelligence, People Skills, Navigation.
PD Warrior- The PD Warrior App is your personal Parkinson’s
coach! Challenge your body and mind with this Parkinson’s specific exercise
Clock Yourself- Can you think
on your feet? CLOCK YOURSELF = Physical Exercise + Cognitive
Exercise is great for practicing reactive steps, weight shifts and direction
Peloton- Feel the rush
of instructor-led studio classes anytime, anywhere on the Peloton app. You can expect a mix of
running, bootcamp, yoga, strength, cycling, and outdoor workouts available at a
Insight Timer- Guided
Calm- guided meditations
Headspace- guided meditations
Wordscapes- cognitive training
Metronome App- may be used as auditory rhythmic cues for movement and speech
Wearable Metronome- Wearable, smart, and powered by vibrations to help
develop an inner sense of rhythm speed and accuracy.
Mindbody App- Find and book
the best fitness and wellness in your community, and around the world. Yoga,
massage, group fitness, barre and more. Find the experiences that you
love, and book them instantly on the MINDBODY app.
Zombies, Run! is an immersive running game app in which gamers are tasked with surviving a zombie apocalypse. As gamers jog in real life, they can listen to scary story lines and sound effects of zombies chasing them. In fact, gamers have to speed up whenever a zombie is on their heels. The farther you run, the more supplies you collect to survive. It’s a great outlet for interval training.
Geocoaching- is an outdoor game app in which people use an app or a GPS device to discover hidden containers around the world. Yes, real containers, and some of them even contain small trinkets for trade. It’s likened to a real-life treasure hunt.
SpecTrek is an augmented reality ghost-hunting game in which users must walk or run to various locations to find virtual ghosts and “catch” them on their phone’s camera.
BallStrike- users have to punch or kick a series of balls that appear all around them in their phones’ or tablets’ rear-facing cameras. The idea is for the user to twist and turn to hit each ball, making the ball explode.
The Walk– which was developed by the same team that created Zombies, Run!, the gamer must carry a package that could save the world to a mysterious destination. As the player walks during the day, they get closer and get closer to the destination, while also unlocking immersive audio story clips along the way. The game takes three months to complete, which might be long enough to develop a new fitness habit.
Superhero Workout- was developed by the same creators of Zombies, Run! and The Walk. In the game, the user becomes the pilot of a battle suit tasked with defending the world against alien forces. The game requires the user to complete real-world exercises, from abdominal crunches to arm punches, to defeat the aliens. The app uses motion detection to track the user’s progress.
Jump, Jump Froggy- The game app requires users to physically jump around to help a frog collect flies buzzing around its head to eat.
Michael J. Fox Foundation: Help find a Parkinson’s cure. Give to Parkinson’s research to speed critical breakthroughs. www.michaeljfox.org
Davis Phinney Foundation– Devoted to helping people with Parkinsons’ live well today. Visit their new resources section to explore articles, videos, webinars, podcasts, and more by topic or use the search bar to find exactly what you’re looking for.
for a complementary healthcare team
Movement Disorder Specialist– Neurologist specializing in movement disorders
Neuro-psychiatrist– A psychiatrist specializing in the diagnosis and treatment of disorders
affecting the brain which cause behavioral, psychological and psychiatric
symptoms. The neuropsychiatrist generally
completes a 4-year residency in psychiatry and then a one-year fellowship
Neuro-psychologist– a psychologist who specializes in understanding the relationship between
the physical brain and behavior. The brain is complex. Disorders within the
brain and nervous system can alter behavior and cognitive function.
Neuro-opthomologist– Specialty dealing with portions of the nervous system
that pertain to the eye and/ or visual system.
Neuro-optometrist– Neuro-optometric services are provided to individuals who have
vision related problems associated with neurological disease, trauma, metabolic or congenital
conditions. When the visual system is disturbed neurologically, it can
adversely affect activities of daily living for both children and adults.
Physical Therapist- Big Therapy and PWR!Moves Therapy for PD
Occupational Therapist- Big Therapy and PWR!Moves Therapy for PD
Speech Therapist- LSVT LOUD and Speak Out
Chiropractic care- Performed by a
practitioner of the system of integrative medicine based on the diagnosis and
manipulative treatment of misalignments of the joints.
Sexologist– A sexologist is a person who studies sexual relationships and
gives advice or makes reports. You can find a practitioner near you at www.psychologytoday.com
Marriage and Family Therapy- Couples therapy is a type of psychotherapy in which a therapist with clinical experience working with couples gain insight into their relationship, resolve conflict and improve relationship satisfaction
person who studies or is an expert in nutrition.
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!
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.
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.
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
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
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.
and Strengthening- Building muscle strength, upright posture, and range of
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
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
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
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.
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.
Gathering input from many successful cash-based practice owners, this podcast covers all components of starting or transitioning into the out-of-network/private-pay business model for your private practice. Though the host, Jarod Carter PT, DPT, MTC, and many interviewees are physical therapists, this information is applicable to most healthcare, fitness, and wellness-related businesses looking to decrease reliance on 3rd party payors, and increase cash-based revenue streams. We cover a huge number of topics including: practice transition strategies, 3rd party payor contract legalities, Medicare rules and legalities in the cash-based model, referral source diversification, online marketing, word-of-mouth marketing, optimal website design, blogging, Youtube and video marketing, networking skills and strategies, the vital cash-based mindset, phone conversations and conversions, scheduling, discharge marketing, administrative training, low overhead systems and automation, private-pay wellness/fitness/prevention programs, and everything else that involves the self-pay practice model, how it differs from the traditional insurance-based model, and what you need to do to be successful with this low-stress, rewarding type of private practice.
Hello again, Balance Crowd, I’m back with one of my delightful friends and mentors with Parkinson’s, Chrystal Kafka. Today we are going to tackle everyone’s favorite thing to discuss…. Constipation! That’s right! There’s no such thing as TMI or over-sharing in this blog post. And we might even have a little fun in the process. Sit back, learn from, and relate to a seasoned PWP (Person with Parkinson’s) about constipation. Here is a list of the resources we discuss in the interview. Enjoy!
Balance Therapy: Chrystal! Thank you so much for lending us your honest insight, especially on such a notoriously awkward subject! First, tell us about your background with PD, and what made you become a PD mentor.
Chrystal: My pleasure! We usually think about PD in terms of our date of diagnosis. So, for me, that was 2006, with tremor onset in 2002. I was 40. Most of us know we’ve had something going on for much longer. To be honest I think I’ve had this my whole life. With a klonk on the head in a car accident when I was 16, I guess that might be a fair place to measure a start. At the time of my 2006 diagnosis, very little was known about PD and most doctors were oddly insensitive and dismissive which only further intensified my feelings of devastation and isolation. Eventually, I found comfort in the care of a physical therapist, who told me what I could do instead of what I couldn’t. That positive force drove me forward to seek out all the things we PWP (People with Parkinson’s) can do to help ourselves feel and do better while we wait for a cure. I enjoy passing that baton to the newly diagnosed and sharing with anyone who’s interested or receptive. Today, while there is still a lot we don’t know, the plethora of information is more exciting than ever…and becoming ever more accurate. The science of PD seems to be closing in on a better understanding as well and is otherwise very cool! Apart from that, being a “seasoned PwP”, as you put it, I’ve pretty much run the gamut of what things to do and what things not to do…and continue to exercise both even today.
Balance Therapy: I’m so glad you found the power of PT and other resources close to the time of your diagnosis. Now, let’s get right down to the nitty-gritty. Have you found that drinking water helps with constipation? Do you find that you are not thirsty for water because of your PD?
Chrystal: It’s not just that we’re not thirsty. Same as our broken nervous system tells our brains it’s a good idea not to move, we actually have the opposite of thirst, it tells us not to drink…especially water. Left to my own devices, I would never drink the water that is placed before me even if told “drink this!”. The math thing gives hydration a new spin. Do you know it? You calculate your weight in pounds (or your best friend’s weight if that’s less painful) and divide by two. I like it. Grabs your attention. My best friend weighs 150, so my daily intake is 75 ounces. Yikes! That’s about four “thermosfuls.” It’s easier for me to follow a hydration regimen in terms of thermosfuls. Because there are so many health things to keep on top of, I tend lose track unless they’re concrete and super simple.
Balance Therapy: Some folks avoid drinking more water for fear of incontinence. What are your thoughts?
Chrystal: A trick I learned from a Urologist: “if drinking more water makes you worried about bladder control, the good news is that your bladder is probably just tiny right now, and guess what, the bladder expands! With training, you’ll be able to safely ingest more and more fluid. Start out small and slowly increase water intake over time until you reach your optimum intake.” (This, of course, assumes the patient has no serious underlying conditions.) Also bear in mind, that while your bladder is small, it is more susceptible to irritation, which promotes spasms and incontinence. If that’s an “aha” for you, then listen very closely. If you and your PT work together on expanding your bladder, you may find that paradoxically the more regularly you drink more water, the more your issues with and/or fear of incontinence may go away…
Balance Therapy: We’re learning more and more about early signs and symptoms of PD. What role does constipation play?
Chrystal: Constipation is correlated with a few other “pre-diagnostic” symptoms, such as REM sleep disorder and micro-graphia, which together are considered as markers for early diagnosis. Markers are considered when diagnosing PD because they are signals of central nervous system dysfunction, the kind we associate with PD. Given that diagnosable symptoms may not arise until 70% of the dopamine cells have died, it’s easy to guess that Parkinson’s starts long before an MD can see it. Again, as far as I know, markers are not yet considered to be the cause of Parkinson’s, but may be signals of early disease progression. Because PD is heterogeneous (appears to have many or varying types), not everyone experiences the same symptoms, but those who do win the constipation ticket know how frustrating it can be.
Balance Therapy: How does constipation impact your life to this day?
Chrystal: In addition to affecting mood, energy and overall comfort, constipation can inhibit the absorption of your meds from your small intestines, leaving you to wonder if your PD has gotten worse. With less symptom coverage, you may experience more stress and tension which spirals back to more symptoms (including constipation!) and perhaps even an increase in meds. Essentially, if you don’t stay on top of keeping your bowels moving, you feel like crap! (Sorry 😉 )
Balance Therapy: Crappy seems like an appropriate word to me. What useful information have you learned from the medical community about constipation? What questions do you still have for the medical community about constipation?
Chrystal: The GI experts in traditional medicine told me that going once every three days is normal for some people and a-ok for me.They were adamant. But over time, along with hemispheric muscle-use imbalances (primary Pd-affected side versus the “good” side) caused pelvic muscle strain, which threw my back and QL muscle into spasm. That was a wordy way of saying three days is not good for me. I was unable to exercise for six weeks, a low point and a scary proposition for anyone with PD. I admit I’m stupidly stoic, and that’s how I got there, but so are a lot of other people. And the real key is why would a doc even suggest that for someone with PD that 3 days is ok? I need to do some research on this. I suspect it’s in the literature for “normal“ people, but I wonder if it’s really been adequately tested in populations with PD.
Balance Therapy: Excellent question. I’m hoping our blog readers will have some of their own advice to share.
Chrystal: That’d be great. I find some of the best sources of info come from other seasoned PwP!
Balance Therapy: Do you know of any over the counter remedies that are appropriate for PwP and have any of them worked for you?
Chrystal: I understand from our community that Miralax is still a predominant go-to for PD doctors as well as increased fiber intake and stool softeners. Docs say that because Miralax is inert (can’t be absorbed into your system), it’s OK to use daily and indefinitely, ignoring the product recommendations to “use no more than 7 days.” And this may be just fine. It just doesn’t sit well with me. To my mind, if there’s a dietary alternative to chemicals, then that’s what I choose to try.
Balance Therapy: If you could put your own warning label on constipation remedies for PwP, what would it say?
Chrystal: Be aware that if fiber supplementation seems to be making your constipation worse, it probably is. It may trigger gut motility in persons with normal peristaltic function, but for those of us who can experience low peristalsis, too much fiber can get caught up in the works and leave us feeling very uncomfortable.
Balance Therapy: Tell us more.
Chrystal: I’ve also heard recommendations for magnesium and probiotics. About magnesium, while MDs tell us that PwP do tend to be magnesium deficient, they also caution that you can take too much. So it might be good to have a chat with your doc or a qualified nutritionist about what amount is right for you. With probiotics, some preliminary research suggests that lactobacillus may help with constipation but, like other dietary supplements, probiotics are unregulated, quality varies, and it’s very early in the science of gut biome to be convinced of targeted impact…But you never know. As long as it’s safe and affordable, then why not try?
Balance Therapy: Interesting! There is a lot of more recent talk about nurturing a healthy, diverse gut biome for brain health. Do you find that this helps with constipation?
Chrystal: I wanna say, “sure!” but gut biome is incredibly complex and the science is young. More commonly I think in naturopathic diagnoses, are SIBO (Small Intestine Bacterial Overgrowth – when gut bacteria is imbalanced), and candida (systemic fungal infection). I understand there are some pretty good remedies for these, which is great, but gut science on the whole is still too new to rely on for solid answers. We do know, however, that diet can greatly affect gut biome in both bad and good ways. We’re not sure how it works, but it’s clear the foods we put in our mouths affect our gut biome and therefore our overall health.
Balance Therapy: Speaking of foods, are there any diets or foods that you recommend?
Chrystal: The Mediterranean diet was given highest marks in a recent study of diets for PD conducted by the NIH. If a whole new diet is too complicated to take on now, you can start by eating at least five fruits and veggies per day. For some of us, that’s a big switch already. But remember, fruits and vegetables are not created equal. For example, some are actually binding and bloating. If you are diabetic or have other restrictions, you should consult a qualified nutritionist before making dietary changes. But if you’re a simple case, go for it. Now, if on the other hand, you think you’re ready to level-up your PD dietary smarts, my favorite source of PD-specific nutrition comes from Dr. Laura Mischley, a PhD nutritionist who specializes in Parkinson’s Disease. She’s insanely knowledgeable, delightful, regularly published in the best research journals, and she practices tele-medicine. There’s a great Vimeo of one of her lectures.
Balance Therapy: Perfect. As a PWP, what’s an example of a dietary change you have made to manage your gut health?
Chrystal: There’s so much! In short, I take supplements and probiotics, I follow the Mediterranean diet and I’m gluten-free. But my daily go-to would be the “Gojira” green smoothie. Yes, Godzilla wasn’t green, but this smoothie isn’t always either. It often looks like the “end” result we wish it to become (sorry again). But in spite of its looks, because of the frozen fruit, it tastes pretty good. If you hate kale and dandelions as I do, you can add lemon or lime juice. This is my son’s ingenious contribution and it works great. Note: We lose our ability to taste, but lemon flavor is typically the one that stays with us the longest. Great for masking.
Balance Therapy: Interesting! We’ve covered constipation and its impact on mood, medication absorption, and musculoskeletal problems. Can you tell what role physical therapy played in your recent recovery from low back pain and pelvic floor muscle dysfunction?
Chrystal: Ok, first I have to say I have a new and total appreciation for your field. I hadn’t seen a PT in many years because I didn’t think I needed one. Seeing a PT now has opened my eyes to its absolute necessity for PD. By the nature of this disease, we are physically imbalanced creatures. And we lose proprioceptive connection with our PD-dominant sides, for those of us who are hemispheric (symptoms start on one side). But I’m sure the same is true for all PwP. In other words, little imbalances go under the radar and might not get spotted until something big happens. No matter how well we think we’re doing, we should see a PT regularly to get to and/or stay in balance. Going forward, I’m going to make sure my doc prescribes it for me.
Balance Therapy: Let’s delve into the difference constipation can impact people with Parkinson’s vs. people without PD. What are your thoughts?
Chrystal: Great question! Constipation in PD can be so much more complex and nuanced than for non-Parkies. For many PwP with constipation issues, low to no peristalsis (smooth muscle contractions in the intestines) is our normal state. The occasional constipation experienced by non-PwP doesn’t really compare. Typically, a therapy for intractable constipation should not be conducted on an “as-needed” basis, but as a continual regimen of interventions. In other words, you can’t say, “gee, I didn’t go today, I better drop some magnesium into my 72 ounces of “makes you go tea” and take a 500mg berry pill and expect everything will be fixed by tomorrow.
Balance Therapy: Understood. Could you give us an example of how you would manage constipation when you’re rocking and rolling with your maintenance program?
Chrystal: I would say the regimen to rock-and-roll constipation is integral to all that we need to do for PD in the global sense. Every “bullet point” I’m about to mention amounts to actively reducing stress while maximizing life involvement and enjoyment/stimulation, thus keeping all systems flowing.
• Staying active: You’ve heard the expression, “Parkinson’s is a disease of inertia.” In other words, the more you keep active the more you get to stay active. That’s lucky! 30 years ago we were told to keep still because it felt better. Now we know how to hack the brain and nervous system. Don’t rely on a program of exercise to be your only source of movement. A parkie’s body needs to keep moving… to keep moving. Also true for our brains. The mantra, “keep moving” says it best. Engrossing ourselves in a sedentary project (as we are inclined to do) may steal more than it gives. If possible, it’s invaluable to err on the side of near-constant physical activity. Buy a goat and set it loose in your house! Anything to keep active.
• Exercise: PWP need to move our bodies, period. Added benefit, moving your body moves your bowels.
• Water: I drink the four thermosfuls of water a day, militantly. I’ve become a water zealot. I bore strangers with its virtues as I’m doing with you now. I say, “booyah!!” with each downed container. Well, maybe not out loud. I used to roll my eyes at “water is the secret to life”, but water really is the secret to life…without constipation.
• Diet: Huge! From easiest to most challenging – 5/5; Mediterranean; Mischley. One good tip I forgot to mention for those dealing with chronic constipation, some docs suggest a habit of several small meals a day versus the traditional three.
• Deep Breathing: A regular practice of deep breathing stimulates the Vegus nerve which may be a key factor in healthy peristaltic movement. Never hurts to bring more oxygen to our noggins too. Yoga, jump rope, hiking, PWR! “Bbbbb-raspberry” and other vocal exercises and “sssssssss” exhales.
• Belly laughs: Huge! And bonus, the added benefit of this dopamine source is a great ab workout without the work. Working your abs moves your bowels. Yay!
• Use your brain: There’s a lot of excitement around the concept of neuro-plasticity, or making new connections between brain cells. A super bonus when your body has been busy killing them. Once thought to be the domain of exercise, some studies are showing that brain workouts may be achieving similar effect. The theory here is that whatever you concentrate on builds new freeways to existing cells, enabling more free-flowing traffic in the part of the brain you’re stimulating. The more free flowing traffic, the smarter, more nimble you. Try to exercise your brain with creative hobbies, crosswords and puzzles, crafts, art, learning new things, teaching and/or being productive are all good. But don’t sit too long. Set alarms to keep moving! I’ll admit, this very topic is the hardest for me to comply with. I have so many sedentary passions!
• Community: If you haven’t already experienced the bond of a PwPeep, I so urge you to go out and get you some of that. These friends will know you and “see” you. It’s indescribable really how profoundly satisfying and “safe” a PwP friendship can be.
• “Dopa-mining”: I inventory the dopamine fountains and factories in my life and draw them to me as much as possible. Dopa is mined from the people and things that make our hearts swell with abiding love and satisfaction. It’s so individual. For your readers, it may be grandchildren, a pet, a partner, a best friend, traveling, volunteering, charity, church, practicing gratitude, meditation, playing music, dancing and rhythms, sports, lively conversation, making or seeing great art, a favorite comedy show, etc. These are just a few ideas.
• Massage and stretching: Huge! Human touch, tension release, nervous system regulation, and it feels good!
• SLEEP!: Another huge topic. The goal is eight uninterrupted hours. Hah! There are so many exciting discoveries about sleep. I’m just reading up on that now.
• And finally, optimizing meds: this is complicated, truly individual and a subject for you and your doc, but I will say this, meds cannot be optimized in a vacuum. That is, in order to get the most out of your meds, you have to use all the artillery at your disposal, let’s call it “homework”, to be as healthy and vibrant as you can be. And if it’s not abundantly clear yet, to achieve this goal, you must also not be constipated! Your meds versus all the other things you must do to feel good have a circular relationship. If you started with meds and you feel better, don’t stop there. Now is the opportunity to get to do your homework. The better you feel by consistently doing your homework the less likely you will feel the need to increase your meds over time. This is a proven, precious savings of a precious commodity. Granted, this list of homework items – staying active, water, diet, exercise, dopa-mining, community, belly laughs, brain hacks, deep-breathing, massage, sleep, meds optimized – may feel like lot of wobbly plates to keep spinning on seemingly spindly sticks, but this is an incredibly worthwhile investment in your happiness and the long arc of your PD.
Balance Therapy: Chrystal, you are a delight and a wealth of insight. Thank you so much for sharing your thoughts and experiences. I hope this isn’t the last we’ll hear from you!
Chrystal: My pleasure. It’s an absolute honor and, as always, I hope you find this useful.
Physical therapy along with exercise is essential in the management of Parkinson’s disease. Physical therapy for Parkinson’s targets stiffness, freezing, small movements, slowness, impaired posture, weakness, imbalance, falls, and difficulty walking. Individuals with Parkinson’s disease often suffer from many unpleasant symptoms. More and more research shows that exercise is important slowing the progression and decreasing the symptoms of Parkinson’s. Dr. Valerie Johnson’s approach to working with Parkinson’s disease is driven by research and enthusiasm for those who want to improve their condition. At Balance Therapy, we strive to get you functioning at your highest level of fitness, activity, and health.