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Bourdain Suicide After Parkinson’s Diagnosis

Today (June 11) I speak to the Rotary Club of Macon about Parkinson’s.

My planned remarks contained nothing about the suicide June 8 of Anthony Bourdain, the famed food writer and TV personality.  They now do.

Media reports link Bourdain’s death to his recent Parkinson’s. I cannot independently verify the connection, but the wealth of detail lends credence to the story.

http://www.smobserved.com/story/2018/06/09/news/diagnosised-of-parkinsons-disease-anthony-bourdain-decided-to-quit-rather-than-fight/3483.html

Bourdain’s death is eerily similar to the circumstances of Robin Williams’ suicide. It occurred after his diagnosis with an especially lethal type of Parkinson’s: Lewy body disease.

(See Corey King’s fine post about Williams. King is my Davis Phinney Ambassador colleague.)


https://thecrookedpath.net/2014/08/14/there-but-for-the-grace-of-god/

The connection between Bourdain and my message to Rotary members is this: there is too often a dangerous lack of information given to Parkinson’s patients at diagnosis and afterwards.

I write about this toxic disconnect in “Counterpunch: Duking It Out With Parkinson’s, the forthcoming book co-authored with by my wife.

Here’s what I recount about the day of my diagnosis in 2014:

“The PA sketched instructions on paper for phasing in the medication (Sinemet) over a month. See the doctor in three months, she said, making the appointment.

“That was it.

“No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.

 

“I was figuratively shown the door, alone in the parking lot with the malady that would shape the rest of my days. The parking lot was for a university medical center designated a National Center of Excellence for PD care.”

The information void for Parkinson’s sufferers is patient neglect at the highest order. It must end. Now.

 

 

 

 

 

 

 

 

 

 

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Terrific Story about Golf and Parkinson’s

A very special Parkinson’s and golf story came across my desk this week. It’s special because it is all about the magic power of neuroplasticity and neurorestoration.

Struby and I are completing final touches on our book “Counterpunch: Duking It Out With Parkinson’s.”

I wrote the glossary this week. Here are three relevant definitions included in it.

Neurogenesis

 Neurogenesis is the process by which neurons are produced by neural stem cells. It is most active during embryonic development but occurs throughout life.

Neuroplasticity

 Neuroplasticity is the ability of the brain to change throughout life. Brain activity of a function, for example mechanics of a golf swing, can be transferred to a different brain location after injury.

“Neurorestoration

Restoration of a brain function through neurogenesis.”

I used golf in the neuroplasticity entry for a personal reason. After losing my ability to swing a golf club in 2016 due to a severe Parkinson’s attack on my autonomic nervous system, I regained it this year. I modified my swing to compensate for PD’s muscle stiffness.

Here’s the terrific story by Gary Van Sickle in Morning Read:

http://www.morningread.com/features/0a9b329d-6c96-4615-b1ad-44cca4b6a9ba

 

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Fighting Parkinson’s For Control

Parkinson’s wants control of us.

That’s a great lesson I first encountered reading Thomas Graboys’ magnificent autobiography of his inner life with Parkinson’s and Lewy Body Dementia,  “Life in the Balance.”

Bowels, bladder, equilibrium, balance,sleep,mood, memory, energy, intimacy.

Parkinson’s demands control of all we are and value.

Not just the Parkinson’s person is in this struggle. So are loved ones in countless ways.

The care partner might ask:

How do I engage this person who is different than before?

What about heir new mobility limitations? Their inwardness or outwardness? Their emotional disengagement? Their discomfort with showing their symptoms in public?

Their masked face? Their difficulty finding words to describe what’s happening to them? Their frustration with new limitations?

Their slowness? Their indecision? Their memory lapses? Their mood swings.? Their unpredictability in multiple ways.?

The Parkinson’s person is similarly conflicted:

How do I describe the life taken from me?

How do I adjust to a condition weakening my well-being?

How do I find common ground with my intimates who want the old me back?

What’s the new contract with them and can I meet it?

How do I live with daily changes in my condition–good days/bad days? What about on/off times with my meds?

Fighting for control, everyday and always.

Our greatest challenge.

 

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The Improv Life With Parkinson’s

Scene: Late Saturday AM at the Macon home of me — the Shuffling Editor (license plate SHFL ED) — and spouse Struby, The Great Copy Editor.

Shuffle and Great are finishing a two-hour conversation with three Parkie couples about the struggle for control of your lifeamidst Parkinson’s many curve balls.

The front door bursts open.

It’s Chuck and Shirley. “Are we late for the Pot Luck lunch?” Chuck asks, waving two bags of fried chicken.

Great and Shuffle are stunned.

Chuck and Shirley are members of the earlier PD Study/Action Group.

Well, no, they are not late for the Potluck scheduled for the followingSaturday.

“I was certain it was today,“ Chuck says.

Shirley rolls her eyes.

It’s a Parkinson’s thing, this mental confusion about dates and times.

(Another member of the first Study/Action Group appeared a day late for a breakfast meeting of Shuffle’s unrelated First Amendment Tribe (FAT) group.)

 

Twelve pieces of chicken and two beers later for the four of us, Chuck says they will return the following Saturday for the potluck

Just another day with Parkinson’s, the Great Disrupter.

Too funny!

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The Gut and Parkinson’s

An unusual type of colitis struck me in 2006. It mysteriously disappeared in 2014, the year I was diagnosed with Parkinson’s disease.

What was the connection between my Lymphocytic Colitis and PD? My physicians were mystified.

Recent research is identifying the gastrointestinal tract, as a probable starting place for PD. It’s quite an unfolding story.

Players include benign bacteria, inflammatory reaction, misfolded protein, and travel of a prion-like element from the gut to the brain along the vagus nerve.

This quite readable Scientific American article tells it well:

https://www.scientificamerican.com/article/does-parkinsons-begin-in-the-gut/

 

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Another Kind Of Perseverance

Perseverance centers a life of meaning. People with Parkinson’s know that well.

What follows is perseverance in a different realm, a gifted young athlete’s hard-fought journey to the top of his sport, lacrosse. The athlete is our youngest son, Jonathan (“JT”) Thelen, #8.

It rained sporadically Saturday night at Mustang Stadium, home of the Stevenson University lacrosse program. The place: Owings Mills, MD, a northwest exurb of Baltimore.

JT likes rain with his lacrosse, the more and the better. He’s been that way since he started playing at age 10.

It’s Stevenson against Widener (Chester, PA) for the MAC Commonwealth Championship. Winner receives an automatic bid to the NCAA D-III championship playoffs.

Also at stake is #8 JT– MAC  Offensive Player of the Year—rematched against Widener’s #41, John Ferguson– MAC DefensivePlayer of the Year.

This game is for revenge — Stevenson’s for the physical pummeling it took from Widener a week earlier. Stevenson overcame a four-goal deficit to edge Widener, 11-10 in the final regular season game for each.

Widener is by reputation aggressive, very aggressive. They were in the week-earlier game. The refs stood by as Widener’s defense repeatedly pole-axed Stevenson attackers, hitting them in the helmet and driving them to the turf.

Nonetheless,  JT had 4 goals, 1 assist.

This night, Stevenson’s blew Widener’s doors off. At half, Stevenson 6, Widener 0.

JT, #8, had 3 goals after 30 minutes. The game ended 12-6 with #8 accounting for 5 goals and 1assist.

The outplayed Widener #41 ended his game ignominiously. He was ejected for unsportsman-like conduct in the final period.

JT finished with 95 points for the season to date, a conference high and  second most ever by a player in the storied Stevenson lacrosse program.

JT is gifted at lacrosse. Academics come hard.

He struggles with ADHD.

He has worked very hard at lacrosse to become the player he is today: commanding on field; graceful and spontaneously creative; uncanny in his full field of vision; a great passer who assists teammates make goals.

Stevenson coach Paul Cantabene refers to JT “doing his thing,” sometimes with a note of criticism for his risk-taking style of play.

JT’s “thing” has propelled Stevenson to a 12-6 record, after starting 0-5 against a killer’s row of opponents and season loss of  two-thirds of the first defensive line.

Jonathan (JT) Thelen preservers with a huge heart and complete commitment to his teammates.

His mother and I could not be any prouder of his achievements than we are today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Things I Wish I Had Heard At Diagnosis

My Davis Phinney colleague Rich Wildau shared a short and lovely piece of writing about Parkinson’s. Its title is “A Letter to My Clients: Things I wish I could have told you on the day you were diagnosed with Parkinson’s.”

The piece goes to the heart of what it means to “Live Well With Parkinson’s, the Davis Phinney charge.

Here are three points I particularly liked. The entire post is at  http://www.invigoratept.com/blog//a-letter-to-my-clients?awt_l=DeIAr&awt_m=nDT1wGzMkwN.Li

“Your Future has Not been decided for you. There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in your hands, no one else’s, and your attitude is everything.

“Start Exercising. Now. The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime.The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

“Take Action Now, don’t wait. You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong– I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them.Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health andfuture your top priority.”

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Update on Shuffling Editor’s Tampa and Macon Work

I wrote the following letter April 10 to donors to Struby’s and my Parkinson’s work in Tampa and Macon.

Dear xxx,

I write to bring you up to date on my Parkinson’s work. I thank you again for your indispensable help to the Davis Phinney Foundation and Me-Over-PD Foundation.

I work in two geographic and Parkinson communities. One is in the Northern Tampa Bay region (Hillsborough, Pinellas and Pasco counties) where Struby and I lived happily for almost 20 years.

The second is Macon, GA, where Struby and I moved in November 2017. Our new home is the splendid continuing care community, Carlyle Place.

My Tampa Parkinson’s community revolves around eight Parkies and their care partners in an unusual support group, the Parkinson’s Disease Action Group (PDAG). I describe it this way in the mission statement:

“No accountability organization or system exists for strongly aspirational and persevering Parkies. We have created one, the Parkinson’s Disease Action Group (PDAG)…

“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains.”

PDAG’s action program is development of a groundbreaking program Me-Over-PD (MOPD) to reach newly diagnosed people with Parkinson’s. Those newly diagnosed individuals will receive — for the first time anywhere — real-time, verified, actionable, local information to assist them in navigating this mysterious malady.

The consortium comprises Tampa graduates of the PD Self Actualization Program of the Parkinson’s Foundation and faculty and students at the University of South Florida’s Zimmerman School of Advertising & Mass Communications.

The heart of MOPD is a live database of crucial resources that include neurologists specializing in mobility diseases, physical therapists, speech therapists, occupational therapists, dietitians and personal trainers.

No such database exists anywhere for the newly diagnosed Parkinson’s person and his/her general practitioner or treating neurologist.  Existing “help lines” have limited highly local information and lack resources for constant verification and updating.

The database will be used to prepare a brochure (“Road Map”) distributed through hospitals, neurology clinics, drug stores, YMCAs, agencies for the aging and doctors’ offices, to name but a few.

The target audience, for starters, is Parkinson’s sufferers in the northern Tampa Bay region.  Based upon lessons learned from the Tampa Bay rollout, MOPD intends to extend its reach by partnering with local and regional community support agencies.

We believe that newly diagnosed Parkinson’s sufferers can substantially increase the suitability of their treatments along with the quality of their lives if they are fully informed of what resources are needed, where these resources are available and how to access them.

MOPD is a Florida non-profit corporation. It received 501C(3) approval in April 2018. MOPD received a start-up contribution of $5,000 from a Detroit donor.

MOPD plans to be operational by the end of 2018. Janelle Applequist, assistant professor at the Zimmerman School is leading operations. I am president.

In Macon, Struby and I host meetings in which Parkies and care partners discuss the nuances of PD and design action steps to improve care for all patients in Middle Georgia. Those have included a lite version of MOPD resources and pursuit of additional exercise programs.

I am working with Mercer University’s medical school to improve Parkinson’s awareness among future physicians.

As of mid-2018, Georgia —  like most other states — lacks a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We are working to pool the university and health-care-organization assets available in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

All the best,

Gil

 

Davis Phinney Foundation, Parkinson's Disease, Parkinson's Patient Care

PD Call To Action For Middle Georgia

Middle Georgia has the assets to become a model of excellence for the care of Parkinson’s disease sufferers. Our challenge is to mesh those assets into a true system.

April is Parkinson’s Awareness Month. An important awareness point is how little information patients often receive at diagnosis.

All too frequently, they get a prescription and are told to return in three months for a follow up consultation.

That’s it.

There is little guidance offered patients on finding valid information about the dread neurological condition or their future with it. Plus, there is no PD care system for them to enter.

Patients are left alone, very alone, with their incurable but treatable malady

PD is an ultimately unknowable condition. Each case is unique to the person. Mine is mostly internal, not readily visible. (intestinal, urinary, equilibrium, balance, temperature control)

I was diagnosed in 2014, eight or more years after, in retrospect, my first symptoms appeared. It often requires destruction of 70-80% of dopamine-producing neurons in the brain for full-blown Parkinson’s to manifest itself.

Dopamine is the chemical that aids nerves communicate with muscles, a kind of body-produced WD40.

The numbers about Parkinson’s incidence are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S.

Second most common neurological disorder after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We can pool the university, health-care-organization and foundation assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

An important marker of a state’s vigor in PD treatment, for me, is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises. North Carolina 19. Tennessee 9. South Carolina 7. Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care system.

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Palliative Care, Parkinson's Disease, Parkinson's Patient Care, Uncategorized

Heads Up Middle Georgia! Your patient-care problems are revealed.

Listen Up Middle Georgia!

We have important work to do assisting people “Live Well With Their Parkinson’s.”

Thirteen Parkinson’s people — patients and care partners— recounted their journeys to students at the Mercer School of Medicine Tuesday, March 6.

Bottom line: The Thirteen got scarce information at diagnosis about the disease or their future with it. Plus, there was no PD care system for them to enter.

They were left alone, very alone, with their incurable but treatable malady

Parkinson’s is the second most prevalent neurological disease after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We can pool the university and health-care-organization assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

An important marker of a state’s vigor in PD treatment is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises; North Carolina 19; Tennessee 9; South Carolina 7; Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care “system.”

Let’s start doing both.

Today.