Davis Phinney Foundation, Must Read, Palliative Care, Parkinson's exercise

“Counter Punch” Chapter 10


Chapter 10:

Exercise Is Medicine


My research convinced me exercise was essential to spar effectively with PD. But what kind and where to find it?


My first neurologist referred me to Big and Loud training at Florida Hospital -Tampa. That’s physical therapy for stretching tense muscles and voice modulation. I benefited but needed Capital Eexercise.


I asked the Big and Loud PTs about that. They pointed me to Tai Chi exercise training.


I found Tai Chi a bit mannered and slow. Nice companions, but I was still searching for The Capital E.


Next tip was that two Tampa YMCAs were starting high-speed, spinning classes for Parkies. I began one-hour sessions twice a week on the spinning bikes. Felt good. Still do it.


But I needed still more.


The more came in a newspaper article. Something called Rock Steady Boxing (RSB) was opening in a West Tampa Bay gym 45 miles from my home. Intriguing name. Worth checking out for my blog.


To see first what RSB was like, I went to thewebsite
https://www.rocksteadyboxing.org/videos/ and opened the YouTube video “We are Rock Steady Boxing.”


Intriguing. I needed to see it for myself.


Gym owner Tara Schwartz pitched program benefits this way: “The studies have shown that forced intense exercise has slowed the progression of Parkinson’s. Parkinson’s slows the conduction of the nerve to the muscles, so everything slows down. Boxing does the absolute opposite of that. And it’s a non-contact form of boxing.”


Good elevator speech, Tara. I watched one day. Signed up and worked out the next.


Ninety intense minutes to pulsating music and demanding, disciplined but supportive instructors: “Elbows up…jab, jab, hook…chest out, stomach in…just 10 more seconds.”


Tara’s class typically has 12 to 15 participants who work out ideally at least three days a week.


Said Tara: “While focusing on overall fitness, strength training, reaction time and balance, workouts include ring work, focus mitts, heavy bags, speed bags, double ended bags, jump rope, core work, calisthenics and circuit weight training. No boxing experience is necessary, and people of all ages are invited to participate.”


Sessions run 90 minutes and typically have 30 minutes of stretching exercises, 30 minutes of weight training and 30 minutes of working on the punching bags.


Until the Lightning Strike (Chapter 4) put me down, I made the 90-mile round trip to the Largo gym three times a week.


Rock Steady was a tonic. It returned my energy, concentration, focus and stamina to pre-PD levels.


I also glimpsed the power that comes with the camaraderie of working a common task with close friends. I will write more about that in Chapter 9.


A growing body of research affirms how exercise improves PD symptoms, bends the disease direction in the right way and helps the brain build new neural pathways to replace functions destroyed by PD.


NPF gets it right about exercise with this summary of the literature as of 2017 (14):

There is a growing consensus amongst researchers about the short- and long-term benefits of exercise for people with PD.


Exercise can benefit in two ways:


Symptom management.  Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination.  Exercise such as treadmill training and biking have all been shown to benefit, as has tai chi and yoga (although more studies are needed).


Possibly slowing disease progression.  There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s.


They agree that practicing movement – physical therapy, occupational therapy, and participating in an exercise program – improves mobility. By avoiding complications, you can avoid some of the things that can make PD worse.


Beyond this, we know that people who exercise vigorously, for example by doing things like running or riding a bicycle, have fewer changes in their brains caused by aging. Studies in animals suggest that Parkinson’s disease is also improved by exercise. Many neurologists in the NPF Center of Excellence network recommend intense exercise to their patients and also to people who are worried about getting PD because of a family connection. One Parkinson’s Outcomes Projectstudy has proven that people with PD who vigorously exercise for 2.5 hours per week show a slowed decline in quality of life, and the sooner they begin vigorous workouts after diagnosis, the better.


The best way to achieve these benefits is to exercise on a consistent basis. People with Parkinson’s enrolled in exercise programs with durations longer than six months, regardless of exercise intensity, have shown significant gains in functional balance and mobility as compared to programs of only two-week or ten-week durations.


However, when it comes to exercise and PD, greater intensity equals greater benefits. Experts recommend that people with Parkinson’s, particularly young onset or those in the early stages, exercise with intensity for as long as possible as often as possible.  Your doctor might recommend an hour a day three or four times a week, but most researchers think that the more you do, the more you benefit.


Intense exercise is exercise that raises your heart rate and makes you breathe heavily.  Studies have focused on running and bicycle riding, but experts feel that other intense exercise should provide the same benefit.

for you.


What happens in the brain to produce these visible benefits? Researchers at the University of Southern California (Fisher et al.) looked at the brains of the mice that had exercised under conditions parallel to a human treadmill study. They found that:

  • Exercising changed neither the amount of dopamine nor the amount of neurons in the animals’ brains.
  • But in the ones that had exercised, the brain cells were using dopamine more efficiently.
  • They also found that exercise improves that efficiency by modifying the areas of the brain where dopamine signals are received – the substantia nigra and basal ganglia.



Lesson Learned:

Living the “vertical” life means exercise, and plenty of it. Try the many options to find the right fit, then stick with

Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise

Davis Phinney’s Madcap Tribe

Shuffling Editor traveled to Oklahoma City, aboard Delta, the airline that charges $25 for a checked bag but provides, free of charge, seats that recline into your nose and smash the service tray into your abdomen. His words and photos (purloined from Ambassador Rich Wildau) report on the Davis Phinney Foundation (Parkinson’s) Victory Summit (Dec. 8) and the meeting of DPF Parkinson Patient Advocates, grandiosely named Ambassadors. (Dec. 9) Correct spelling and grammar provided at no charge.

Davis Phinney: The Man and Inspirational Speaker

Davis Phinney
Davis Phinney

Trim, striking, composed. Rolling gait of an athlete. Secure, warm, modest, easy to meet. Straight-in-your-eye guy. Lives in the moment. Droll, funny and engaging. On this day, very deliberate in movement (bradykinesia). Some facial masking. His self-described “B” Game is anyone else’s “A+” Game. Master of stage– without pretense.

Davis Phinney: Visionary

PD World headed his way. Less about medicines, more about Living Well (with or without a malady). Teams are key—in a bicycle race, in his organization, for best health care management. Camaraderie essential for well being. Servant leader.

Davis Phinney: Tribal leader

His Ambassadors are fearless, brave, funny, child-like, relentless and madcap. God bless the whole lot.

Carl Ames
Irrepressible Ambassador Carl Ames in his Christmas suit
Ambassadors shake
Ambassadors shaking out their PD
Victory Summit
Victory Summit celebrants











Davis Phinney Foundation, Palliative Care, Parkinson's Disease, Parkinson's exercise

Pounding Dr. Parkinson With Intense Exercise

Must Read, Parkinson's Disease, Parkinson's exercise, Research

PD Dyskinesias and Role of Inflammation in PD

Two interesting pieces just came across my electronic desk. One involves dyskinesia treatment. The other concerns growing evidence of the role of inflammation in PD.

They are worth attention.



Davis Phinney Foundation, National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, Parkinson's exercise, Parkinson's Foundation, PDF

Hall of Famer Okun Opines on PD Rx

I wondered this as I read the JAMA Network piece on best practices in PD care: “Who is this fluent writer plumping interdisciplinary PD care?” NEW recruit to the cause, I murmured to myself.


Got to the author’s name at the end. No other than Shuffling Editor Hall of Famer, UF’s  Michael Okun.

More good work from the Chief.
Read and learn.
Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise, Support Groups, Uncategorized

Essential PD Communities

I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.

Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.

Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.

To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/

Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.

He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.

Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.

Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.

I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.




Parkinson's Disease, Parkinson's exercise, PDF, Support Groups, Uncategorized

WORKAROUNDS: Counterpunching 14 PD Indignities


I treasure the work of the late Dr. Tom Graboys, esteemed Boston cardiologist.

I reread his memoir about PD (“Life in the Balance”), and was riveted by two words: diminishment and control.

Graboys’s major PD undertakings were managing his diminishing capacities and keeping control of his life.

Those are my issues, too.

I give you a sampling of my tactics to counter PD’s relentless drive to diminish, and wrest control, of my life.

  1. Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
  1. Clumsiness when eating (dropsies): substitute spoons for forks.
  1. Can’t remember where I left keys and like valuables: tether items to a constant in life. In my case, a small leather pouch that’s always at my side. (Boy Bag)
  1. Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
  1. Driving uncertainty: get technology loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas.
  1. Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
  1. Thanks to a nOH-like condition, peeing every 30 minutes, urgently: always know (and plan around) location of nearest toilet; wear quick-exit gym pants; stow your pride and employ adult diaper for trips.
  1. Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
  1. Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
  1. Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
  1. Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
  1. Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
  1. Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
  1. What-to-wear-today dilemma (due to not remembering your calendar obligations): choose clothes night before. For this once well-dressed guy, this is a new challenge. I need garb that fits the day and is quickly and easily removed, thus assisting me in avoiding the ultimate public embarrassment: pissing in one’s shoes.
Parkinson's Disease, Parkinson's exercise

Valuable New Exercise Routines

I am spending time at New Smyrna Beach this month. The vacation break, while soothing, is taking away my exercise routines at Rock Steady Boxing and interval cycling.

I received an email a few days ago that has very nicely filled my PD exercise void. It’s from Jim Stoll, a man I don’t know except through email correspondence. It lays out an exercise program related to the “Big Program” I took at Florida Hospital-Tampa shortly after I was diagnosed in 2014. It’s named PWR! (Details to come.)

First, about Jim Stoll. He describes himself as a 69-year-old man with advanced PD. He continues: “I was diagnosed … in 1970 after a carbon monoxide poisoning incident. Things did not get real bad till 2014, 44 years later. Now my body just quits listening to my signals. I also have sacroiliitis which makes walking of more the a few hundred feet quite painful.

“I had MoveBig therapy once about a year ago, and it helped some. Then I learned about Parkinson’s Wellness recovery PWR!, which, from what I understand, is MoveBig version 2.

“I am very excited about PWR! It implements research-based neuroplasticity-principled programming in rehab and fitness settings

“PWR! is centered around four moves –up, rock, twist and step –and is done in five positions prone (lying face down), supine (lying face up), sitting, standing and all fours.

“I have been doing the PWR! moves in the supine position for about a month. Both my wife and I have noticed a definite improvement in my ability to walk.”

Jim provides YouTube URLs that demonstrate the moves. Some of them are part of of the Rock Steady floor routines I know very well.

RESULTS BASED: PWR! Training – Unfreezing for an individual with Parkinson disease with severe freezing: https://www.youtube.com/watch?v=bz_dQnvuNfY
PWR! Moves Positions – Standing https://www.youtube.com/watch?v=Y6Wtd13lwrc
PWR! Moves Positions – Sitting https://www.youtube.com/watch?v=TDBVDCkkxV0
PWR! Moves Positions – All 4’s https://www.youtube.com/watch?v=oXUzOmfPwD8
PWR! Moves Positions – Supine https://www.youtube.com/watch?v=UOVcVPUGEHM
PWR! Moves Positions – Prone https://www.youtube.com/watch?v=ZFhk73ydmto
PWR Moves! Let’s Get Moving! (group exercise session) https://www.youtube.com/watch?v=yPspiGqHinA

Introductory Breath Flow for Parkinson’s Wellness Recovery (PWR!) https://www.youtube.com/watch?v=POiAkJeFSRs
PWR! Gym Social Week 1 – Em-PWR!-ment https://www.youtube.com/watch?v=H2Pcbfqt7Sc
PWR! Gym Social Week 2 – PWR! Nutrition https://www.youtube.com/watch?v=6Amei5OkK1I
PWR! Gym Social Week 3 – PWR! Teamwork https://www.youtube.com/watch?v=GhBIXwrQ4eU
PWR! Gym Social Week 4 – Optimizing Your Meds with PWR! https://www.youtube.com/watch?v=B6ZlIKaBQHo
PWR! Gym Social Week 5 – PD Specific Exercise https://www.youtube.com/watch?v=yMsUKsl4G_M
PWR! Gym Social Week 6 – Big, Fast, PWR!-ful https://www.youtube.com/watch?v=SdrPPUFXooU
PWR! Gym Social Week 7 – HOW to Exercise with PWR! https://www.youtube.com/watch?v=6w6a3SBuTVo
PWR! Gym Social Week 8 – PWR!Moves Intro https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 9 – PWR! Up with Emily https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 10 – PWR! Rock with Jennifer https://www.youtube.com/watch?v=41mH1dCZ9Pk
PWR! Gym Social Week 11 – PWR! Twist with Emily https://www.youtube.com/watch?v=GELblae395s
PWR! Gym Social Week 12 – PWR! & Brian Grant Foundation’ Power Through Project’ Trailer https://www.youtube.com/watch?v=DEOGY0-9xvk
PWR! Gym Social Week 13 – PWR!Step with Jennifer https://www.youtube.com/watch?v=oPxIdrMq4Ik

Must Read, Parkinson's Disease, Parkinson's exercise, Support Groups

Two Major Advances for Parkinson’s Care in Tampa Bay


I returned Sunday from Denver where I participated in the national rollout of the most exciting self-help program for PD that I have ever experienced.  Tampa Bay is one of eight metro areas chosen to pilot a national training program like no other. It provides Parkies the knowledge and tools to become masters of their treatment in order bend their PD trajectory in the right direction.

Tampa joins Richmond, Detroit, Houston, Phoenix, Denver, Boulder and Philadelphia in piloting this national program. One Parkie evaluator called it “life changing.” (I enthusiastically agree it will accomplish that for most enrollees.) The presenting organization is the Parkinson’s Disease Foundation.


The program is Self-Efficacy Training customized for PD. Between 26 and 36 newly diagnosed Parkies and their helpmates will meet once every month in two and one-half-hour sessions. They will start in September 2016 and finish in June 2017. Participants will acquire the disciplines and skills necessary to take charge of their condition, becoming captains of their treatment teams.


This contrasts with the all-too-common wandering in the PD jungle of confusion and ignorance dealt many new Parkies today. I will co-lead our program with Sherry Harlan, an experienced and dedicated USF health administrator.


For me, this program is a high point in my work to help Parkies escape the passivity and despondency that grips many newly diagnosed Parkies.


I also learned today that Hillsborough is getting its first Rock Steady Boxing program. It is owned and directed  by an experienced therapist I trust. It will open soon in the Westshore area near downtown Tampa. The only existing Tampa Bay program is in Pinellas County just east of Indian Rocks Beach, a very long haul from most of Hillsborough County. I will transfer my Rock Steady training, halving the 94-mile roundtrip. It will need recruits beyond me. Interested Parkies should email  me at gthelen1@icloud.com.