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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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“Counter Punch” Preface

You are stunned to hear you have Parkinson’s disease.

 

You are a certified Person With Parkinson’s (PWP), or a Parkie, as I prefer to be called.

 

Your options are just two: 1. Take to the couch (or recliner) and let the disease grind you down one bodily system at a time. 2. Get vertical, get moving and engage the Beast at every step of your journey. Counter punch the bastard. Dizzy him with metaphorical jabs, hooks and upper cuts. Take back a portion of the ground he has gained from you.

 

That’s it. A stark, binary decision. Fight or melt away.

 

This Call To Action is about my choice of Option 2.

 

I will try to answer the two questions I get most often.

 

“I’ve just been diagnosed with Parkinson’s. What will happen to me?”

 

“What’s it like having Parkinson’s?”

 

I will offer no easy answer to either. But I will address both.

 

PD is an ultimately unknowable condition.  Each case is unique to the person. Even the numbers 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.

 

One million cases in a nation of over 320 million persons.  A mere drop in the bucket, right?  High public awareness of PD suggests otherwise.

 

I speak often to civic organizations about PD. I invariably ask: “How many of you know someone with PD?” Routinely, a third or more of the group raises their hand.

 

What about the question “What will a PD diagnosis mean in my life?” The best answer I can give is “everything.”

 

My stab on the what’s-it-like question is this: Every day with PD is different. Funky, sometimes. Apathetic, others. Disorganized, frequently. Sometimes, even the old “normal”.

 

Rarely is there a reason to explain the difference, except one: STRESS. The more stress, the greater the intensity and number of symptoms. Less stress, fewer and milder symptoms.

 

I will share my experience since diagnosis in 2014 at age 75. I was a semi-retired journalist, executive director of the Florida Society of News Editors and part-time college professor in Tampa, FL.

 

I retired in 2006 as president and publisher of the then-thriving Tampa Tribune (now shuttered). Previously I was executive editor of The State newspaper in Columbia (SC) and editor of The Sun News (Myrtle Beach (SC). Before that I was a senior editor of The Charlotte Observer and a Washington correspondent for 12 years. At diagnosis I was Clendinen Professor of critical writing at the School of Mass Communications, University of South Florida.

 

My university was Duke (history major and pre-med). Intending to be a physician, I successfully completed two years of classes at Cornell University Medical College. I decided instead to become a health and medicine reporter, which became my specialty as a Washington correspondent. (Associated Press, Consumer Reports, Chicago Daily News)

 

It was impossible to imagine then how my medical training and writing would sharpen my sparring with PD 50 years later.

 

I have chronicled my PD journey on my blog www.shufflingeditor.com. The shuffling refers to my foot-dragging that kicks up scatter rugs.

 

This modest undertaking makes no effort to be encyclopedic or definitive on Parkinson’s. It is one man’s (and his wife’s) story of counter punching the many assaults and disabilities PD has dealt me. I will recount my strategies and workarounds to stay upright, moving and productive.

 

My fundamental message is take aggressive action, shape your future, don’t be a victim. Persevere.

 

I owe a huge debt of gratitude to Diane Cook, the Parkie genius who developed an enormously powerful training program that has guided me in my journey. It equips Parkies with the knowledge and mental tools to ease the symptoms of this progressive, incurable but treatable condition.

 

My second debt of gratitude is to the founders and practitioners of Rock Steady Boxing. It’s a PD therapeutic training program that goes well beyond punching a heavy bag. My book title comes from Rock Steady experience.

 

The words I live by are Love, Laugh, Hope, Pray, Persevere.

 

The tone of this book is meant to be informal and sometimes cheeky- – like the newsroom cultures I so love. I expect you will sometimes find me venturing too far out the verbal diving board. Forgive me.

 

I hope the experience I recount will give fellow Parkies a few useful tools to counterpunch PD, a wicked disease indeed.

 

 

 

Gil Thelen

Xxxx 2018

Macon, GA

 

 

 

 

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“Counter Punch” Chapter 1

Chapter 1:

“It Won’t Kill You”

 

The physician assistant studied my walk.  My right arm swing was out of sync with my left. Right was lower.

Case closed.

“It appears to be Parkinson’s,” she said, almost cheerfully.  “The good news is it’s treatable. And it won’t kill you. Something else will.

“The bad news is Parkinson’s is progressive and incurable.”

I heard those carefully chosen words on an early spring day in 2014. The exact date I don’t remember.

Not remembering diagnosis day is quite unusual among Parkies. For most it’s a red-letter day, the day their life changed forever.

Me?

I was more relieved than shocked at the news. Finally, I had an answer for the bedeviling symptoms that had been mounting since 2006: depression, extreme fatigue, leathery fingers, violent nightmares acted out at my wife’s expense.

In one vivid dream, I was a soldier in World War I. Germans were attacking my position. I hurled myself down an embankment, arms flailing. One arm, in real time, struck my wife.

At other times dreams threw me out of bed, knocking over and breaking the bedside table and lamp and cutting my forehead on the table edge. (The cut was quite close to my eye, and blood still stains the carpet.)

Tell your internist about the dreams and their increasing frequency, my wife Struby  said. “I am worried.”

Just old man stuff, I thought to myself. No way to stop them. Waste of time to bother a busy doctor with that.

Wrong call.

Had I messaged my internist, Elizabeth Warner, about the dreams, the PD diagnosis could have come months earlier and treatment started sooner. (The action-filled dreams, REM Sleep Disorder, are a hallmark of PD.)

In retrospect, I saw that some physical deterioration I had experienced was due to Lewy Body damage, not normal aging.

I had difficulty throwing a baseball. I was progressively losing distance on the golf course.

A 240-yard drive in 2010 limped 180 yards in 2015. I hung up my golf shoes and clubs that year after playing passionately for 55 years. I could no longer swing a club and maintain balance. (I returned to the game in late 2017 after intense training and exercise restored much of my lost balance and equilibrium.)

There were behavioral changes. I had uncharacteristically withdrawn from faculty friends at USF in the months before diagnosis. Depression was squashing my normal exuberance.

My classroom energy was lower. I love coaching and teaching. But some days I shortened class to fit what energy I had.

Rewinding to the time before diagnosis, my internist and her colleagues continued to search for answers to my case.

Vitamin B-12 deficiency perhaps? Nope. Monthly B-12 injections didn’t do much.

The odd leathery feeling in my hands sent me to the neurologists, referred by the internists. B-12 deficiency can cause peripheral nerve damage. The peripheral test for damage was negative.

But the PA’s test of my balance, muscle tone and walk revealed the true malefactor. It was PD killing off dopamine-producing neurons in my brain.

Oddly enough, symptoms often don’t appear until 50% to 70% of the dopamine neurons are dead.

Yet the PA’s diagnosis was tentative. No blood or other routine test can identify PD beyond any doubt.

Proof of diagnosis is considered to be significant symptom improvement  after adjusting to the drug carbidopa-levodopa (Sinemet). The drug is commonly called the “Gold Standard” for treating PD.

The PA sketched instructions on paper for phasing in the medication 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.

Compared to most newly diagnosed Parkies, I was fortunate. I had medical training. I was a reporter trained to seek validated, reliable information. I had been an editor-in-chief of large newsrooms, accustomed to aggressively making and carrying out complicated plans.

What if I had none of those assets? I shudder at the thought.

 

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Lesson Learned:

No system of care exists if you have Parkinson’s, unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.

It’s all on you. You live by your ingenuity and perseverance.

Goodluck. Indeed.

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“Counter Punch” Chapter 2

 

Chapter 2:

Reporting My Malady

 

Malady identified. Parkinson’s. Time to report the medical story of my life.

 

I sought accurate, verified and crystal clear information: standard ingredients of good journalism.

 

I knew the playing field.

 

Google and the internet were first. The information there was voluminous, disjointed and often of questionable origin and intent, commercial or otherwise.

 

Next the websites of the four (soon to be three) major foundations focused on PD. They are the Davis Phinney Foundation, Michael J. Fox Foundation, National Parkinson’s Foundation and Parkinson Disease Foundation.

 

The information was straightforward and mostly well organized. My research found the sites trustworthy, accurate and reliable.

 

Each overlaps with the others but is somewhat specialized. Fox focuses on new drug research. Davis Phinney has exercise as its niche. NPF and PD, now merged as the Parkinson Foundation, are known for their patient care and patient advocacy work.

 

My friend Kirk Hall has assembled a comprehensive list of information available on the four sites, plus several more. It appears on his website http://www.shakypawsgrampa.comand is listed with is permission at the conclusion of this chapter. It is a wise compilation and deserves widespread attention.

 

Kirk, a Parkie, has devoted much of his great energy and intelligence to designing new care systems for PWP. I will write more about Kirk’s work in later chapters.

 

One of Kirk’s recommendations deserves special note: the invaluable PF publication Parkinson’s Disease Q&A Seventh Edition.

 

The most complete PD compendium is the Davis Phinney’s EVC xxxx

 

I give Q&Aand VC to newly diagnosed Parkies I meet. I deliver t]hem in medical offices that are likely to see PD patients. Order it free on www.pdf.org. Order xxx

 

When my initial reporting was done, I wrote a column for The Tampa Tribune(1). Excerpts follow:

 

It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.

 

Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.

 

A Parkinson’s specialist is invaluable.Many of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist (MDS). An MDS is a neurologist, who has undergone two years of additional training. An MDS can help us to better manage the disease and stay current on research and clinical trials.

 

Staying active is essential.Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustainedexercise (such as boxing, Tai Chi, Hatha yoga, interval cycling) can ease symptoms, combat fatigue and reduce stress. Regular daily activity (going for walks, doing the laundry) can also help improve life with Parkinson’s.

 

We can benefit from complementary care.In addition to medications, we can benefit from physical, speech and occupational therapy, the knowledge of nutritionists and psychotherapists and the wisdom and moxie of social workers. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery, it takes considerable effort to assemble that team.

 

All support groups are not created equal.Support groups have different constituencies (young/elderlyonset, newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.

 

There is a lack of localized information.Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.

 

We can live well.Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties.

 

Here’s Kirk Hall’s useful resource guide (2):

Help locating a movement disorder neurologist and why this is important:     – Michael J. Fox Foundation (MJFF):https://www.partnersinparkinsons.org/find-movement-disorder-specialist?cid=aff_00032

 – Parkinson Disease Foundation (PDF):http://www.pdf.org/spring12_specialist

 

Exercise information:

 – Davis Phinney Foundation (DPF):http://www.davisphinneyfoundation.org/living-pd/10tools/?gclid=Cj0KEQjw75yxBRD78uqEnuG-5vcBEiQAQbaxSNfO0tFlTMxBMKAMkKJ6jp6-tzI7Y4nwRBFoEliVcgcaAkdv8P8HAQ

 – Brian Grant Foundation (BGF): http://www.briangrant.org/

 – National Parkinson Foundation (NPF):http://www.parkinson.org/understanding-parkinsons/treatment/Exercise/Neuroprotective-Benefits-of-Exercise

 – PDF:http://www.pdf.org/en/parkinson_exercise_impact

 

Newly diagnosed information:

 – PDF:http://www.pdf.org/symptoms

 – NPF:http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons

 – MJFF:https://www.michaeljfox.org/understanding-parkinsons/index.html?navid=understanding-pd

 – American Parkinson Disease Association (APDA): http://www.apdaparkinson.org/parkinsons-disease/understanding-the-basics/

 

Young onset information:

 – APDA: http://www.apdaparkinson.org/national-young-onset-center/

 – NPF:http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/young-onset-parkinsons

 

Help locating a support group (PWP & care partner):

 – NPF:http://www.parkinson.org/find-help/resources-in-your-community

 – PDF:http://www.pdf.org/en/support_list

 – APDA: http://www.apdaparkinson.org/resources-support/local-resources/

 – PDF:http://www.pdf.org/en/airpo

 

Help locating a caregiver support group:

 – Parkinson’s Health (PH):http://www.parkinsonshealth.com/Caring-for-Someone-with-PD/Support-Groups.aspx

 

Talk directly to a person who can help:

 – NPF:http://www.parkinson.org/find-help/helpline

 – PDF:http://www.pdf.org/en/ask_expert

 – MJFF: https://www.partnersinparkinsons.org/parkinsons-advocate-program?cid=aff_00032

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Lesson Learned:

 

Three websites provide a wealth of reliable Parkinson’s information: Parkinson’s Foundation (parkinson.org), Michael J. Fox Foundation (michaeljfox.org) and Davis Phinney Foundation (davisphinneyfoundation.org).

 

 

 

 

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“Counter Punch” Chapter 3

Chapter 3:

Had Tom Graboys Been A Neurologist

 

After writing the Tribune column, I encountered two books that changed my understanding of PD. Each challenged me to serve fellow Parkies more vigorously and effectively.

 

One is the autobiography of the late Thomas Graboys, MD. The other is the provocative and authoritative masterwork of Oregon journalist and Parkie Jon Palfreman.

 

Graboys was a beloved Boston cardiologist who struggled for many years with dementia connected to his Parkinson’s.

 

He famously wrote a book,Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia(Sterling). It bared his innermost thoughts and emotions about the feel and look of advancing Parkinson’s and dementia.

 

I imagined how Graboys, a master at patient care, would break the news of a Parkinson’s diagnosis if he were a neurologist and not a cardiologist.

 

All of us end up in the neurologist’s office with a variety of seemingly unrelated problems. That’s one of the many things that make PD so frustrating.

 

When the doctor’s verdict is rendered – Parkinson’s disease -it is the day many will never forget. For some like me, there is a momentary sense of relief that the accumulating symptoms have a cause and a name. For others the reaction is terror, shock and confusion.

 

We ask: “What does this mean for us?” A brusque answer one person received was “your symptoms will only get worse.” In my case, the answer was “at your age of 75,something else will kill you first.” Few receive information beyond the diagnosis that day.

 

Commonly, we leave the doctor’s office with a pill prescription and instructions to return in three months. We are on our own. We get no literature explaining what Parkinson’s disease is, what we can do about it, and what our future holds. What if Tom Graboys had been the one delivering the news?

 

He would have taken the time to give us a short explanation of the disease, encouragement about the therapies available to treat it, and some information about the importance of exercise and diet.

 

He also would have given us a set of instructions about exactly where on the internet we could find reliable information, where exactly and what specific exercises we should seek and information about support groups in our area. He would tell us that patients who do well with the disease don’t let it own them – they own and control it. You don’t have to do this alone, he would say.

 

Graboys would not have done this from behind his desk but sitting close to us in a reassuring manner.He would have written down on a piece of his stationary his home phone number and told us to call anytime we needed help. He would not have said to return in three months, but in one month. At that second meeting, we would discuss what we had read and the questions we had.

 

Graboys also would explain at that second meeting that there was a Parkinson’s Center to join. It would provide educational seminars, special programs for caregivers and recommendations on finding physical and other therapists. He would work closely with the center to see that care provision was modified as needed.

 

The Graboys approach would reduce our anxieties and provide an organizational anchor.

 

Graboys would write out the medications he was recommending and what they were for. He would ask us what he or she thought was a reasonable exercise regimen. Dietary and other lifestyle changes would be discussed, to help us enhance our life. He would call those elements our plan.

 

It was the “contract” between Graboys and patient that, if adhered to, would help ensure a positive outcome. And because the plan was personal to each, it was more likely to be honored.

 

Just leaving the office with a plan inspired hope because implicit was the message that we could do things to take control of our illness.

 

Indeed, while 300 words may have been on that page, there really was just one: hope. The written plan inspired hope that by following instructions we could enhance our chances of living out a fairly normal life.

 

The second book is Jon Palfreman’s Brain Storms:The Race ToUnlock The Mysteries of Parkinson’s Disease(Macmillan).

 

Palfreman is an experienced journalist and educator who was diagnosed in 2011. He is best known for his documentary PBS work on Frontline and NOVA.

In his book, you meet a skilled dancer, Pamela Quinn, who after contracting PD found ways to retrain her brain functions so that she could still dance gracefully.

 

Writes Palfreman (3): “Quinn is certainly an outlier, with a slowly progressing form of the disease. But we can all learn from her. Her wisdom exhorts Parkies to keep active, to mindfully circumvent gait and balance issues.”

 

As Quinn puts it, ” ‘We must treat the mind as a muscle; it needs to be strengthened and made flexible just as much as our legs and core.’ ”

 

Palfreman argues persuasively that the classic symptoms of PD – rigidity slowness and balance problems – may be what he calls “the tip of a clinical iceberg. It now seems that Parkinson’s disease takes hold of an individual decades before any tremors appear and continues wreaking damage throughout the brain until the end of life.”

 

A patient’s symptoms can be far ranging, well beyond the classic neuromuscular ones. Palfreman writes (4):
“… in light of this evidence, many neuroscientists are lobbying to rebrand Parkinson’s disease from a motor disorder to a whole-body condition, involving an enormous number of signs, symptoms, and complaints.

 

“These include not only the classic features – such as bradykinesia, tremor, rigidity, postural instability, stooped posture, shuffling gait, freezing of gait, dystonia, facial masking, small handwriting, dysarthria (problems with articulation), dysphagia (trouble swallowing), oily skin, bladder problems, pain, constipation, and loss of smell – but a growing list of other problems as well.

 

“People with Parkinson’s experience neuropsychiatric symptoms such as depression, anxiety, hallucinations, cognitive impairment, and impulse control disorder (the last caused by dopamine agonists).

 

“They suffer from a whole host of sleep-related disorders – including REM sleep behavior disorder, excessive daytime sleepiness, restless legsyndrome, insomnia, and disordered breathing while sleeping.”

 

Palfreman pulls no punches in describing PD’s trajectory (5).

 

“… people with Parkinson’s progressively lose core pieces of themselves. We forget how to walk. Our arm muscles grow weaker. Our movements slow down. Our hands fumble. Simple fine-motor tasks like buttoning a shirt or balancing spaghetti on a fork become a challenge. Our faces no longer express emotions.

Our voices lose volume and clarity. Our minds, in time, may lose their sharpness . . . and more.

“The ‘more’ varies widely from patient to patient. Some lose the sense of smell. Some shuffle instead of stride, freeze in place as they try passing through a doorway. Some drool. Some have all the symptoms, others just a few. Some are dramatically helped by the drug regimen prescribed, others continue to struggle as the regimen gets tweaked.”

 

Palfreman fingers the alpha-synuclein protein as the major culprit, writing (6): “I find the notion that the disabling symptoms of Parkinson’s disease that I and other Parkies experience are caused by toxic species of alpha-synuclein spreading prion-like [think Mad Cow Disease] throughout the brain to be a very powerful one indeed.

 

“In a story with many setbacks, this body of research gives me genuine hope — it suggests that, in theory, chemical interventions to break up and destroy the misfolded protein aggregates might help slow, stop, or reverse Parkinson’s.  If given early enough, such treatment might even prevent the disease from ever reaching clinical significance.”

 

Writing in the New York Times, Palfreman said (7):
“Here’s the theory scientists have come up with: Sometimes good proteins go bad. For multiple reasons (like genes, environment and age) proteins can ‘misfold’ and stick to other proteins. When proteins do this, they can become toxic, capable of jumping from cell to cell, causing other alpha-synuclein proteins to do the same and potentially killing neurons (especially dopamine-producing ones) in their wake. This process is not confined to Parkinson’s disease.”

 

An intriguing hypothesis Palfreman offers is that until recently human beings rarely lived beyond their middle years. Could it be, he asks, that aging cells lose their ability to produce healthy alpha-synuclein?

 

Cambridge University protein chemist Christopher Dobson says nature requires “that we live long enough to pass on our genes to our offspring, but it doesn’t really care after that. And so it’s evolved proteins that are stable enough and protected well enough by cellular defense mechanisms to last forty, fifty, or sixty years, but there’s not much margin of safety.” (8)

 

Palfreman concludes that he thinks four issues in particular are important for the Parkinson’s community.

 

The first is improved delivery of l-dopa to the brain. Less than 10% of a typical dosage now reaches the brain due to the competition with other proteins to cross the blood-brain barrier.

 

The second is the placebo effect. The placebo effect is where a patient is given a dummy medication in a clinical trial of some other medication yet feels symptomatic relief.

 

Medicine Net defines the placebo response this way: “A remarkable phenomenon in which a placebo — a fake treatment, an inactive substance like sugar, distilled water, or saline solution — can sometimes improve a patient’s condition simply because the person has the expectation that it will be helpful.” (9)

 

The third is recognizing the importance of non-motor symptoms such as cognition, sleep disorder, pain and depression.

 

The fourth is the need to develop personalized medicine. Palfreman defines this as a “collaborative culture of care where specialized professionals and engaged patients work together to try to achieve optimal outcomes.” (10)

 

Personalized medicine intrigues me. An example is Parkinson Place in Sarasota, FL. It is an integrated facility with education, social activity, exercise and counseling for people in different stages of their disease. It involves teams of providers such as a neurologist, therapist, psychologist and legal experts.

I will write about two other examples of personalized medicine in subsequent chapters: Palliative Care and PD SELF.

 

n

 

Lesson Learned:

 

Parkinson’s can involve many bodily functions, making it in all likelihood a systemic disease. End stage can be stark but must be faced to plan properly your remaining life with PD. Models exist for engaging patients in improving their care and increasing their odds of a positive outcome.

 

 

 

 

Uncategorized

“Counter Punch” Chapter 4

 

Chapter 4:

Parkinson Lightning Strike

 

You look terrific!”

 

I get that, or a variant, from clued-in friends.

 

Mini-me wants to say: “Expect to see me drooling in a wheelchair?” Or, “Surprised that I’m still vertical?”

 

Mini-me suppressed.

 

Instead: “I am a deceptively lustrous used car – great looking, but a mess under the hood.”

 

My visible symptoms are modest. Mild tremor in my right hand. Slower, shuffling walk (bradykinesia). Careful steps (balance and equilibrium issues).

 

Inside lie the big problems. At their untreated worst, they include:

Hot flashes (yes, my giggling female friends); busted gyroscope; marathon peeing (up to three times an hour); spastic bladder; non-firing colon; buckets of drinking water a day. Loss of feeling in both hands, especially the right.

 

I am a poster boy for PD Non-Motor Symptoms,a catch-all for big, big problems.

 

Let Dr. David E. Riley explain those in some detail. He is a guest blogger on my site www.shufflingeditor.com.

 

Riley, an MDS specialist, has an integrated PD patient care center in Cleveland, OH. He modeled it after Parkinson Place in Sarasota.

 

Dr. Riley, the floor is yours (11):

 

“One of the most important developments in the study of Parkinson’s disease in the last 25 years has been recognition of its non-motor complications.

 

“Neurologists still diagnose PD by identifying the traditional motor manifestations (tremor, slowness, soft voice, small handwriting).  But they have come to realize that non-motor symptoms can be even larger problems.

 

“Non-motor manifestations fall into four categories: cognitive and psychiatric complications; autonomic nervous system disturbances; sensory abnormalities; sleep disorders. Each comprises many problems, although they are often interrelated.

 

“Cognitive refers to higher order functions of the nervous system: thinking, processing, decision-making, memory, communication.

 

“Dementia is a loss of more than one of those capacities. People with PD are at high risk of dementia. It is an ominous development. It produces its own problems and limits our ability to treat other PD manifestations.

 

“Psychiatric refers to a group of disorders. Foremost is depression, which will affect about 50% of people with PD. It often occurs before people know they have PD, and may precede motor symptoms by many years. (It’s not depression over the realization you have PD. That’s a different matter.)

 

“Other common psychiatric complications are hallucinations, illusions and delusions. Those result from interaction between brain disease and the medications people take.

 

“Psychiatric manifestations of PD are frequently considered alongside cognitive complications because they often coexist. Both are major sources of stress for a care partner.

 

“The autonomic (involuntary) nervous system functions automatically, outside our control. We do control our voluntary nervous system. We determine its actions, such as cross your legs or scratch that itch.

 

“Major responsibilities of the autonomic nervous system areregulation of blood pressure and heart rate, bladder and sexual function, digestive and bowel function, and control of perspiration and body temperature. PD potentially disrupts all those.

 

“The most common symptom of autonomic impairment is constipation. The two autonomic problems causing the most disability are inability to maintain blood pressure, resulting in lightheadedness and fainting, and loss of bladder control.

“Sensory disturbances are underappreciated. They include loss of smell and restless leg syndrome.

 

“Sleep disorders in PD include insomnia, excessive daytime sleepiness, and a tendency to act out dreams — known as REM-sleep behavior disorder.

 

“REM disorder is a major tool of researchers. It has a striking ability to predict the development of PD and related disorders many years before diagnosis.

 

“Virtually all PWP report some non-motor symptoms, but the number and types vary tremendously from person to person. This explains why no two people experience PD in exactly the same way.

 

“PWP should not assume that a particular non-motor manifestation will necessarily happen to them or expect that medications will affect them in the same way as someone else. I like to compare this PD variability to a salad bar. Everyone comes away with a salad, but the number and assortment of ingredients is never the same for any two people.

 

“Non-motor manifestations account for much of the disability and lessened quality of life in PD. For many, non-motor symptoms are their greatest challenge. People with PD should discuss any non-motor symptom with their doctor.”

 

There you have it.

 

Thank you, Dr. Riley.

= = =

Now about my PD lightning strike.

 

I had been doing fine until 30 months after diagnosis. Typical were Rock Steady Boxing three times a week; spinning twice a week; deep involvement with my newspaper, church and PD advocacy work.

 

In what seemed an instant, everything changed.

 

I was dizzy, wobbly on my feet, afraid of falling. I couldn’t quench my thirst. I was peeing three times an hour. No energy. Withdrawn.

 

The lightning struck while my wife Struby and I were in the Carolinas visiting friends and family. I was a mess on the trip home.

 

Take driving. I wasn’t judging distances properly; made a sloppy left turn and almost ran off the road.

 

Minutes later, Struby grabbed the steering wheel of our Mazda CX9. I had dozed off.

 

It was an excruciating drive on I-85, then I-75. I needed every rest stop.  Some were even too far apart. I peed in my shoes twice on the 16-hour trip, normally 12 hours.

 

Our marriage, quite understandably, took a hit. It needed work to manage this new development. Lots of work.

 

My autonomic nervous system (ANS) was shot full of holes. Machine-gunned, if you will.

 

Urinary system kaput. Temperature regulation out of control (those hot flashes). Balance and equilibrium so wasted that I could longer box or spin. I feared falling. I was apathetic and fatigued much of every day.

 

PD’s hard right put me on the canvas, at least temporarily.

 

I grabbed the ring’s ropes and metaphorically staggered to my feet. It was time to land some punches against the malady in its advance. (A progressive condition, which PD is one, “advances.”)

 

Doctors first.

 

I tried to arrange a conference call with my neurologist (MDS) joining my internist, Lucy Guerra, in a three-way conversation.

 

No sale with my MDS.  Not interested in an interdisciplinary medical intervention (neurology and internal medicine working as a single team on my behalf).

We moved forward separately.

 

Struby and I met with MDS. He said the lightning strike was simply PD progressing. He offered no remedies for the kidney, temperature and balance/equilibrium disasters.

 

In effect, his message was: Roll with the punches. That’s life with PD, your unwelcome tenant.

 

Next, Struby and I met with internist Guerra. She agreed with the “progressing” diagnosis of our MDS. But she was willing to take on my disaster sites with specific medications. She referred me to a urologist for a bladder work up.

 

Between the two, I got some relief from my worst symptoms. The medications from Guerra and urologist Jorge Lockhart worked.

 

I called my college fraternity brother, David Paulson, asking his advice. David is a retired urologist living in Florida. He served many years as head of urology at the Duke University Medical Center.

 

I needed additional help, he counseled, recommending Duke or the University of Florida.

 

I chose UF and encountered the remarkable Michael Okun, M.D. for a second time. We had spoken briefly at the World Parkinson’s Congress several months earlier. The topics then were similar family names and a friend in common.

Okun’s UF bio says this (12):

 

“Okun is the Administrative Director and Co-director of the Center for Movement Disorders and Neurorestoration. The center has over 40 interdisciplinary faculty members from 10 UF departments and 6 colleges.

 

“Okun has championed interdisciplinary care both at UF and in his role as the National Medical Director for the Parkinson’s Foundation… Okun was a co-founder of the Center for Movement Disorders and Neurorestoration and has implemented its completely patient-centric approach to care.”

 

Okun has written several books, the best known being Parkinson’s Treatment: 10 Secret to a Happier Life(Amazon??)

 

I emailed Okun about receiving care from his team. He responded within minutes. “Yes. Come on up to Gainesville. We’ll set up your intake examination within a few weeks.”

 

Okun’s passion for patient care stunned me. I immediately thought of David Lawrence Jr., my customer-obsessed boss at The Charlotte Observer. Both men put patients/customers first and demanded their team do likewise.

 

Okun shared the patient-first philosophy of Tom Graboys, the Boston cardiologist I wrote about in Chapter 3.

 

My second counter punch was a broader mobilization of my care team.

I turned to two other remarkable practitioners on my care team:  Personal trainer Jordan Brannon and physical therapist Dr. Matt Lazinski.

 

Brannon, while only in her early 20s, directs her family-owned Rock Steady Boxing franchise in the Tampa Bay area. She is skillful, confident and wise well beyond her years.

 

Lazinski, once a top intercollegiate tennis player, earned a doctorate in physical therapy. He talks and moves nonstop in the action area he shares with other USF PTs.

 

Earlier, Matt had helped me recover from shoulder surgery that preceded my Parkinson’s diagnosis. I wrote a ditty about him after that success.

 

It greatly amused his wife and long-suffering fellow USF therapists who could not escape his antics in their shared space.

 

Here it is, titled “A Full Lazinski”:

 

A full Lazinski comes in oral and written form. To qualify, an utterance must be in Pidgin-Polish, be loud, be irritating, be insensitive, be half right, be delivered while in perpetual motion and be partially intelligible. To combat a full Lazinski, say nothing, turn your back and flee the room, screaming.

 

Brannon and Lazinski teamed to restore much of my balance and equilibrium.

Thanks to them, I resumed my Rock Steady Boxing and spinning classes.

 

I am convinced Brannon and Lazinski helped me establish new brain pathways to replace those destroyed in the lightning strike. (Remember the story of the dancer who recovered her skills in Jon Palreman’s book “Brain Storms.”)

 

That recovery process is “neurorestoration.” I will write more about it in a coming chapter. It is a vital tool when sparring with PD.

 

n

 

Lesson Learned:

 

Parkinson’s non-motor manifestations can progress instantly and brutally, taking you to your knees. You can recover much lost ground through neuro-restoration. Tightly coordinated medical care is essential for recovery.