Dr. Valerie Johnson’s Favorite Resources for PD

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Dr. Valerie Johnson’s Favorite Resources for PD

Posted on: October 21st, 2019

This post was written by Valerie Johnson

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!

Find A PD Professional

Balance Therapy LLC with Dr. Valerie Johnson, PT, DPT www.balancetherapytoday.com

LSVT BIG Physical and Occupational Therapy– LSVT BIG trains people with Parkinson disease (PD) to use their body and move more normally.https://www.lsvtglobal.com/LSVTFindClinicians

LSVT LOUD Speech and Swallowing Therapy– LSVT 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/

Pelvic Floor 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

Parkinson’s Voice 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

Books

Bent: How Yoga Saved my Ass by 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’ M.E.d

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

Facebook Groups

Balance Crowd with Valerie Johnson, PT, DPT from Balance Therapy LLC

Invigorated Community with Sarah King, PT, DPT from Invigorate Physical Therapy and Wellness

Mark Burek FB page and founder of Hope Soars Non-profit

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.

Facebook: https://m.facebook.com/parkinsonswomensupport/

Website: www.Parkinsonswomen.com

Start Living Today PD with Heidi Reynolds

Strongher Together: Women fighting Parkinson’s

YOPD Forums-Parkinson’s Support Group

Online Exercise Programs (Cognitive and Physical)

Theracycle- Motor-Assisted Theracycle© Forced-Exercise Bike for Parkinson’s Sufferers. Reduces Rigidity, Tremors & Falls. Improves Balance, Rigidity, Tremor, Strength, Mood & Sleep. www.theracycle.com

Peloton- Live and on-demand Stream Cycling, Running, Bootcamp & Other Workouts Daily. www.onepeloton.com 

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/

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/

Dance Dance 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.

Invigorate Physical Therapy and Wellness- 5 week online PD booster program to restore balance, strength, stamina, and self-confidence. https://www.invigoratept.com/

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.

Nintendo 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.

Smovey Vibroswing System- “Smovey Rings” are a general health and wellness tool that combine exercise and vibration, which have particular beneficial applications for Parkinson’s disease. https://www.smoveynorthamerica.com/

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

Community Exercise Programs

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

Peddling for Parkinson’s- Participants 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

Smart 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 program.

Clock Yourself- Can you think on your feet? CLOCK YOURSELF = Physical Exercise + Cognitive Exercise is great for practicing reactive steps, weight shifts and direction changes.

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 tap.

Insight Timer- Guided meditations

Calm- guided meditations

Headspace- guided meditations

Wordscapes- cognitive training and practice

Soundbrenner Metronome App- may be used as auditory rhythmic cues for movement and speech

Soundbrenner Pulse 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.

Foundations

Michael J. Fox Foundation: Help find a Parkinson’s cure. Give to Parkinson’s research to speed critical breakthroughs. www.michaeljfox.org

Parkinson’s Voice Project: https://www.parkinsonvoiceproject.org

Parkinson’s Foundation- https://www.parkinson.org

Specialties for a complementary healthcare team

Movement Disorder SpecialistNeurologist 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 in neuropsychiatry.

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.

Sexologistsexologist 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, most often a Licensed Marriage and Family Therapist (LMFT), helps two people involved in a romantic relationship gain insight into their relationship, resolve conflict and improve relationship satisfaction 

Nutritionist- A person who studies or is an expert in nutrition.

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

The Cash-based practice podcast with guest Valerie Johnson

Posted on: May 11th, 2019

This post was written by Valerie Johnson

Listen to the episode here:

CBP 085: Neuro, Non-Profits, and…the NBA? – Dr. Valerie Johnson

About the podcast:

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.

Constipation tips from a Seasoned PwP

Posted on: May 10th, 2019

This post was written by Valerie Johnson

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!

Dr. Mischley: https://vimeo.com/191664871
Recommended foods for flow: https://www.medicalnewstoday.com/articles/322382.php
Mediterranean diet study by NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349773/

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.  

Valerie Johnson, PT, DPT

Vestibular and PD Rehab SpecialistBalance Therapy LLC
Website:www.balancetherapyllc.com
Email: Valerie@balancetherapyllc.com
p: (214) 356-8123 f: (817) 782-9726 

What is Balance Therapy LLC?

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. 

One Woman’s Journey with Parkinson’s Disease

Posted on: April 17th, 2019

This post was written by Valerie Johnson

Everyone’s experience with Parkinson’s disease is different. Symptoms and disease progressions vary greatly among individuals with PD. Here is an interview with Cathy Clark. From competitive swimming to being diagnosed with early onset PD, here is one woman’s journey through PD and how she returned to exercise later in life.

Brain changing PWR!Moves classes for Parkinson’s disease at TCU

Balance Therapy:  Hi Cathy, thank you for sharing your insight and experience with us. Let’s dive right in.  Tell us a little bit about your background.

Cathy:  I am 65 years old, and have had Parkinson’s Disease for 21 years.

Growing up in Fort Worth, Texas, I had an active lifestyle and began swimming competitively at age 9.  I continued swimming while attending High School and College. In 1977, I began teaching Kindergarten in Ft.Worth and went on to received a Master’s degree from Texas Christian University, specializing in Early Childhood Education. I am a proud Mother of one son, Scott, born in 1984, a constant blessing in my life. I continued teaching until retiring in 2008. (33 years)

I enjoyed working in the yard, mowing and gardening, water sports, sail boarding, and skiing. In the summer months I taught private water safety and swimming lessons. I also joined the Granbury Seals Swimming Team, in 1999. I continued swimming and coaching until 2012.

Balance Therapy: How has your life changed since your diagnosis?

Cathy: I believe my active early life, has had a positive impact on living with Parkinson’s Disease. In 1997, age 44, I was strong, and in excellent health, when I noticed the tremor in my left hand. Two years later. I was diagnosed with Parkinson’s Disease and began taking a dopamine agonist, Permax. Various medications were successful in controlling my symptoms. Over the years, through trial and error, I tried most of the common drugs at one time or another.

Balance Therapy: How has your lifestyle changed to improve your PD symptoms?

Cathy: In 2006, I learned that too much protein sabotaged my medicine, resulting in  “OFF”spells. These “OFF” times produce severe  body  pain and hinder movement. I began a limited protein diet, cautiously monitoring protein amounts. Servings of 4-5 grams of protein, spacing adequate amounts throughout the day, scheduling meds, carbidopa / levodopa  1 hour before protein or 2 hours after. 

Balance Therapy: What treatments have you tried besides medication?

Cathy: In 2013, after dyskinsia (a side effect of carbidopa/levodopa for some patients) became debilitating, I had successful Deep Brain Stimulation, ridding me totally of dyskinsia, allowing for a much better quality of life. PD continues to advance, and medication is becoming less effective. Symptoms that are not helped by DBS are “ freezing”, impaired speech, illegible handwriting and balance problems. In spite of recovering from several serious falls, I try to have a positive attitude, remembering all of the things that I still can do.

Balance Therapy: How did you discover physical therapy for treating Parkinson’s?

Cathy: I met Dr. Valerie Johnson in October, 2018, at the Parkinson’s Foundation Moving Day. Dr. Valerie was in her booth, in person, greeting everyone with her memorable smile. She displayed confidence and self assurance as she took time with those that stopped by, answering questions with certainty and encouragement.

I was having difficulty speaking and she listened patiently, expressing support, as well as a sincere interest in understanding my concerns. Dr. Valerie instilled in me knowledge and thoughts of another way. I experienced renewal in faith, hope, and spirit from her motivational energy.

Dr. Valerie Johnson, a Physical Therapist, specializes in Balance therapy and works with Parkinson patients. She is aware, and understands, the multifaceted symptoms and complications of Parkinson’s disease, effecting patients in different ways. Her perspective is that over time, a Parkinson’s brain looses connection with the body, causing progressive symptoms. She believes that with time and work, we can “wake -up” the brain and re-learn to do things that we haven’t been able to do, or that have gotten hard to do.

Balance Therapy: Thank you Cathy! What role has exercise played in managing your Parkinson’s disease?

Cathy: The reality of the brain- loss connection became very apparent to me, as the new exercises were introduced . A rather simple stepping  exercise left me totally LOST!  I just did not / could not understand and I could not make my legs, feet, (or brain) do it! Dr. Valerie, poised and graceful, is very deliberate demonstrating her expectations. I try to watch and listen carefully and to follow directions, remembering the proper movement, to hold my posture, to widen my steps. But this time, I did not get it. Feeling extremely confused, I ask her to show me and tell me again… Slowly… and again, and a third time. She patiently demonstrated, stood beside me, doing it with me, talking me through the steps, slowly, praising my effort and encouraging me with comfort in her voice, In her patient and gentle manner, she helped me work through the twisted reality going on in my blank mind. I worked on it at home, and finally did it, correctly, and several sessions later

I was swimming again. I appreciate Dr. Valerie and her commitment to the community and I benefit greatly for her positive energy!!!

 In addition to private physical therapy, Dr. Valerie brings the same confidence, support and enthusiasm to group exercise classes.  Now I participate in weekly PWR! MOVES, (Parkinson’s Wellness Recovery MOVES). Valerie teaches PD community-based exercise classes that and are funded by a grant from the Parkinson’s Foundation of DFW. This program is for those affected by PD. It is a specific skill-training program to maintain or restore skills that deteriorate, interfering with everyday movement.  Dr.Valerie Johnson is nurturing, and encouraging to each class participant.

I also recently started attending a weekly boxing class led by Scott Morris, Round 9 Kickboxing Fitness . This is a similar format to improve balance eye-hand coordination, endurance and self-confidence.

Voyage Dallas interviews Valerie Johnson, PT, DPT

Posted on: February 27th, 2019

This post was written by Valerie Johnson

Today we’d like to introduce you to Valerie Johnson.

Valerie, please share your story with us. How did you get to where you are today?
I was warned that it would be difficult to get a neurology job right out of PT school. They must have been wrong because right after completing my doctorate in physical therapy, I started working in vestibular rehab. Vestibular therapy is a subspecialty under the umbrella of neuro rehab that focuses on inner ear and other balance problems.

The idea of starting my own physical therapy clinic was inspired by a man who wanted to hire me on a private basis. I met him while I was working part time at a hospital in Fort Worth. He was recovering from a cerebellar stroke and wanted me to continue to help him after his release from the hospital. My husband and I had just moved from Austin, Texas, where I had been working exclusively with balance and dizziness disorders. I loved the work and noticed there really wasn’t much specialized care for imbalance and dizziness in Fort Worth. I agreed to start my own clinic so that I could work with him. Read the rest of this article.

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