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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.

 

 

 

 

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“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.

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“Counter Punch” Chapter 5

Chapter 5: The Stress Villain

“God has abandoned me,” I said.

 

“Never,” The Rev. Jim Harnish answered. “Not you. Not anyone. Never.”

 

Two years later, I had a conversation that oddly connected to the one with Jim.

 

“Please, nurse, help me fill out this form,” I said. “I cannot do it myself. I can no longer write legibly.”

 

Stress connects the two conversations . Stress big and small. Existential stress and mundane stress. God and handwriting.

 

Stress is this Parkie’s supreme challenge. It brings on or amplifies other symptoms. It accelerates PD’s relentless march to diminish my powers and my sense of control.

 

Nothing in my life is natural and easy any longer: Not walking, talking, eating, peeing, defecating, bathing, dressing, sleeping, driving, planning, remembering, making love, making do.

 

Parkinson’s blows demand retaliation: ankle-biting insurrections. I call them my workarounds  – ploys that take back some lost ground.

 

What were my major stresses, outside the obvious ones of having PD?

 

My daily energy was less. So why was I still investing in people and activities that were peripheral to the needs of my new life? I was hanging on to responsibilities from my pre-Parkinson life.

 

I have an emotionally demanding loved one who has barraged me with countless and endless phone calls for decades. I did not cut the calls off.

 

Now, there’s a boundary about when and how long I will talk. When the time I allot is up, I end the call.

 

I also decided to stop wasting time with people who do not challenge, nourish or really matter to me.

 

Hear the words of Mario de Andrade from “The Valuable Time of Maturity.”(13) He is a Brazilian poet, novelist, musicologist, art historian and photographer.

 

I want to live close to humane, very humane people, who laugh at their own stumbles … close to those who do not run away from their responsibilities, who defend human dignity and who only want to walk on the side of truth and honesty…

 

The essential is what makes life worthwhile. I want to surround myself with people who know how to touch the hearts of people; people whom the hard knocks of life taught to grow with softness in their soul.

 

I am in a hurry … to live with the intensity that only maturity can bring.

 

My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.

 

It was time to cut away myclutter and focus my agenda.

 

I chose two commitments: advocacy for Parkinson’s patients and advocacy for the betterment of my community.

 

I take very seriously my church’s activist directive of “Making God’s Love Real.” I enlisted in the effort to start a downtown out-reach ministry, The Portico.

 

My current Hyde Park Methodist senior minister, Magrey deVega, describes The Portico this way: “It takes the DNA of this church and expresses it in a worship style that is participatory, spontaneous and organic, with weekly communion and quiet moments of meditation. It places Hyde Park on the front porch of spiritually seeking individuals who are looking for a community to converse, connect and help change the (larger) community.”

 

I extended my Rotary pledge of “Service Above Self” by starting a Meals On Wheels route for the club.

 

I competed to make Tampa a test site for the powerful PD SELF patient empowerment program. We won. (I write much more about PD SELF in Chapter 8).

 

I promised to share my Ankle Biter retaliations for Parkinson’s nasty punches. I list the infirmities, then my counter jabs called workarounds.

 

Memory: I haveultra-short-term memory problems. Where are the keys? Cell phone?  Cigar lighter?  Remembering my plan for the day still works.

 

Workarounds:Everything has its designated bag. Keys, wallet, reading glasses, pill case, business cards in my small, leather “Boy Bag.” Boy Bag goes inside my leather shoulder bag/purse – my “Man Bag,” which also contains cigar accessories, business cards, small electronics. Man Bag goes inside my backpack. Backpack contains other bags for electronics, headphones and cigar accessories.

 

I seed the house with duplicates of needed items easily misplaced: reading glasses, styluses for computer screens, pens and pencils. Consider the clutter necessary, please Dear Wife.

 

Clothes: I have gained 30 pounds and pee constantly.

 

Workarounds:Buy waist expanders for too-small pants. Buy new pants with elastic waistbands for quick exits.  Wear exercise pants for same reason.

 

For car trips consider pants two sizes too large and adult diapers. Pride is a luxury with PD. To avoid morning choke-up on what to wear, set clothes out the day before — when your head is clear and dopamine is “on.”

 

Get a 36” shoehorn. Takes the muscle strain out of putting on shoes.

 

Loss of feeling in fingers: Mine is 95% gone in my once-dominant right hand; 80% gone in the left.

 

Workarounds:  I am training my left hand to be dominant – eating utensils, cup holding, stylus use. (Neuroplasticity, neuroregeneration at work.)

 

Use only cups and glasses with handles to avoid “dropsies.” Eat shamelessly with a spoon where a fork used to serve.

Emotional volatility: “Emotional incontinence,” in a Parkie friend’s unforgettable rendering.

Workaround: Think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.). One of my former agonists gave me a wandering eye, to my wife’s chagrin. That agonist is very much gone.

Multi-tasking kaput: I can no longer perform multiple tasks at once.

Workaround:KISS principle always. (Keep it simple, stupid) Rely on care partner for help.

Bradykinesia:Life in the slow lane. Slow walking. Slow talking. Slow thinking.

Workaround:  Add 30 minutes (or more) to the time of a planned task (packing for trip, gym date, doctor visit).

Balance: Tipsy walking.

Workaround: Forget a cane or walker; use walking sticks for balance. Sexy and pleasantly eye-catching (“Cross country skiing in Florida! How neat.”)

Around the house: Add or get rid of things around the house that can trip you up or send you down.

Workarounds: Install grab bars in the shower. Put in comfort-height toilets or booster seats. Ditch scatter rugs that constantly get tripped over.

Car: Leaving stuff in and around car.

Workaround:  Rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle. Open the garage door FIRST.

Driving uncertainty: The BIG issue for many.

Workarounds: If feasible, get a 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.  Increase normal number of side-to-side and straight ahead eye sweeps to gain more information.  Use computer program to increase peripheral vision. Take driving test offered by AAA/AARP. If a physician qualifies you,  get a handicapped parking mirror-hanger or license plate. It gives you additional door-opening space and room to park straight, rather than Parkie-crooked.

 

Recall that Dr. David Riley (Chapter 4) listed visuospatial deficits as a higher order mental function problem in PD. Those deficits link to driving problems like lane drifting, driving too close to other cars, hitting curbs and crooked parking.  Visuospatial disruption is why I almost ran off the road after the PD Lightning strike in the Carolinas.

They also explain why I often bump into furniture and aim wrong in reaching to pick up objects, such as wine glasses. Bad aim can put, aargh, red wine on the floor.

n

 

Lesson Learned:

 

Stress is PD’s ally. Reduce it to live better. Use counter punches to regain lost ground from PD’s ravages.

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“Counter Punch” Chapter 6

Chapter 6

Parkinson’s Scrambles My Thinking Life

 

Nothing prepared me for the Parkinson’s experience “inside” me, the under-the-skin disruptions.

 

I prided myself, before PD, on my self-awareness. I understood my stream of consciousness and my sometimes-turbulent emotions. Or so I thought.

 

My Parkinson’s is predominantly the non-motor kind, centering on the autonomic nervous system. That means most of my bodily functions are affected at one time or another.  Dr. David Riley talked about those in Chapter 4:

 

“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.

 

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

 

 

Awareness of inner fluctuations matters. The fluctuations often signal needed medication adjustments.

 

Too frequent peeing? Take a salt pill for water retention. Hot or cold flashes? Adjust my Sinemet dosage or timing intervals.

 

Constipation? Take an additional laxative capsule. Sleep interruptions? Increase my Trazidone dosage before bed.

 

Stiffness and pain in my back? Get my physical trainer to provide remedial exercise.

 

Heightened consciousness of inner doings led me to a closer examination of my psychological needs and behaviors.

 

The 800-pound gorilla was my marriage.

 

I met my future wife Cynthia Jane Struby atTheCharlotte Observer, where we were both sub-editors in the late 1970s.

 

She went by the handle Struby, not Cynthia. “I don’t see myself as a Cynthia,” she has often said.

 

She is tall (just shy of 5’10”), statuesque,  composed, smartly dressed, personable, attentive, detailed, athletic and quite smart. The room pays attention when she enters.

 

Struby was a journalist from birth. Her late father, Bert Struby, was the longtime president and publisher of The Macon Telegraphin Central Georgia.

 

She grew to share many of his strongest traits. He was cautious, precise, quantitative, explicit, principled, devout, rule-driven, predictable, steady and inward. What you saw was what you got.

 

First-child daughter started newspapering after graduation from Furman, a demanding university in South Carolina. By age 24 she had meteorically risen to managing editor of a small daily in Virginia.

 

It wasn’t hard to fall for Struby, for all the right reasons.

 

We were bookends.

 

Me: driven, extroverted (in public settings), passionate to a fault, big-picture guy, conceptual. Myers-Brigg personality type E/INTJ.

 

(After PD, I added rule breaker — on occasion and when the rule is stupid. My bumper sticker reads ”Obedience School Dropout.”)

 

Struby: Deeply introverted (while seemingly not), detailed, quantitative, cautious, future focused, rule maker and rule follower. (If there were such a bumper sticker, hers would be “Obedience School Honor Graduate.”) Her Myers-Brigg type is ISFJ.

 

The onset of Parkinson’s dealt our marriage a staggering blow.

 

Over time — we later realized with outside help — we were meeting too many personal needs through others, not one another.

 

Struby drew support from her wide network of friends: tennis, PTA, social organizations, neighborhood, Scouts, school, professional, lacrosse parents.

 

I drew support through my profession, Rotary International, church, golf –and cigar buddies (See Appendix xxxx for the story of Tampa Humidorcamaraderie.)

 

PD ripped off our marital Band-Aids. Struby correctly refers to those as heavy-duty, duct-tape patches.

 

For our marriage to survive, we had to dig deep to establish new connections and partnerships with one another

 

A no-nonsense therapist pointed the way. I treasure Mindy for her uncanny insights and pivotal guidance.

 

My therapeutic breakthrough came when I related my childhood to my subsequent life with women.

 

I love the company of women. But I harbor mistrust, always.

 

My mother, Violet Okonn Thelen, was a promoter of her self-importance. Always center stage. Always demanding attention and adulation. How many times she would recount triumphs such as:

 

High school girl friend of  Johhny  “Tarzan” Weismuller. Check.

 

Pioneering female realtor in Milwaukee. Check.

 

Owner (and grand hostess) of a successful gift shop in Richmond, VA. Check.

 

My brother Neil and I were her stagehands.

 

Our role was to win academic and sports honors that she would display on her massive charm bracelet. (All-conference football and track. Phi Beta Kappa and Omicron Delta Kappa keys, to name jut a few.)

 

Vi had a devastating way of controlling her eager to please and emotionally needy sons. Displease her and she would ice us emotionally, withdrawing her affection.

 

That experience carried forward.

I am always on guard about women pulling the emotional rug from under me.

 

I have never been able to trust fully any woman, including those I loved and love. (That’s you, Struby Thelen.)

 

A second impediment in our marriage was my adjustment to Parkinson’s unpredictability and randomness.  I could not count on anything about tomorrow, including being alive to see it.

 

Today is all I have. Past and future matter much less than they did pre-PD.

 

My stream of consciousness is “in the now.” I live as if today were my last on earth.

 

The oddity of PD symptoms draws me closer to fellow Parkies. They don’t need elaborate explanation of our shared disabilities, the kind where there is no real answer to the question “why.”

 

Talk is easy among Parkies. Personal ties are quite “tribal,” using Davis Phinney’s lovely phrase for the Parkie People in his orbit.

 

I increasingly had cut my wife out of my deepest engagement with Parkinson’s. I thought she didn’t get the randomness, the ambiguity, the non-linearity.

 

Struby wanted “why” answers where there were none.

 

Our differing needs put us on a crash course.

 

Struby demanded precise detail of my every thought and move. Or so I felt.

 

I believed she wanted to control whatever freedom was left to me after PD had taken its gigantic bite.

 

I remembered Tom Graboys’ wonderful line about how the Beast relentlessly diminishes our powers and saps our personal control.

 

Three contenders pulled at my sense of control: my malady, my mate and me. I was deeply torn.

 

Struby and I needed common ground, more meeting in the middle of our differing personal needs.

 

For me that meant supplying the detailed information Struby needed about my thoughts and actions. It was her psychic oxygen.

 

I would share my daily encounters more completely and with precise details.

 

Struby hates “messes” in her environment. I would redouble efforts to avoid cluttering our household.

 

Bradykinesia is a Biggie for us, especially with its ugly twin, Bradyphrenia. Bradykinesia is slowed movement. Bradyphrenia is slowed thought processes and responses.

 

I am not any more stupid with PD, just slower in knitting my thoughts together in concrete words and coherent sentences.

 

Bradyphrenia includes impatience with details and diminished executive function capacity, such as multi-tasking and juggling. I have to do things one-step at a time and keep them simple (KISS principle).

 

Read on in the next two chapters to learn Struby’s take on managing the peculiarities of a Parkie husband. Me.

 

Lessons Learned: Parkinson’s is an inner journey of new awareness, much of it positive. It is disastrous to cut your life partner out of details about that journey. Communicate. Communicate. Communicate. Bradyphrenia can be a bigger challenge than Bradykinesia.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Uncategorized

“Counter Punch” Chapter 7

Chapter 7:

The Marital Duct Tape Frays

 

“If you had behaved like this when I met you, I never would have married you,” I shrieked at Gil.

 

Shrieking is not my style. Nor is resistance to change. But Gil’s adjustment to PD had me on the ropes, to borrow one of his boxing metaphors. Our marriage was coming apart. The duct-tape patches were fraying.

 

Over 38 years of marriage we had successfully managed, together, several lifetimes of disruptive change. We had evolved together.

 

Our challenges had been supersized: his messy divorce and two pre-teens living with us briefly just after our 1-year wedding anniversary; eight cycles of in vitro fertilization to get pregnant; the adoption of two incredibly talented boys, each challenging in their own right; a parent with Alzheimer’s living with us several years while our boys were young (about 3 and 7); the deaths of all four parents; job changes and moves; retirement and second part-time careers; full-time career to freelance career to stay-at-home-mom to PTA officer/Cub and Boy Scout leader/sports team mom to empty nester.

Our marriage could weather anything, I proudly thought.

 

I was SO wrong.

 

At least, not without significant outside help.

 

In a soul-baring conversation 2 1/2 years after diagnosis, Gil and I realized our marriage was more patches than a sturdy whole. It was a good thing that duct tape had been reallystrong.

 

The additional strain of PD was wearing the marriage patches of compromise conspicuously thin, although we both considered them absolutely appropriate at the time.

 

We were OK on nuts-and-bolts decisions, such as how we wanted to arrange our legal affairs. We had laid things out with each other and an estate attorney years ago, knowing that each of us will die at some point. The minor tweaking and updating, given the unpredictability of PD, had been going easily.

 

Talking about what might lie ahead, we agreed on how to begin downsizing and where our next home should be. We educated ourselves on the various levels of care options – not knowing what might be needed when – and explored retirement facilities to see where we might best fit in and be comfortable. We even liked the same location.

 

Since the progression of Parkinson’s is so uncertain and varies from person to person, palliative as well as end-of-life care continues to be an open discussion between us.

 

Focusing on the emotional “us right now” proved to be the huge stumbling block.

 

We both said we wanted the marriage to work, but each of us had significant doubts. The trust that we’d had in each other had greatly eroded, and we realized that PD and its medications were overwhelming our duct-tape patches.

 

How had we gotten to this dreadful place? We both jumped at the chance to add a social worker to the expanding Thelen PD care team to help us work through our conflicts.

 

Our terrific therapist quickly identified our primary challenge. For two people who were professional communicators, we were lousy at communicating openly with each other. Those are my words, not the therapist’s.

 

We had drawn too many assumptions from each other’s actions and non-actions. We had raised too few questions when they should have been. So when the diagnosis of PD hit, neither of us was prepared to deal with it together, as marital partners.

 

When Gil came home from his doctor’s appointment and shared that he had Parkinson’s, my first reaction was relief. Now there was a name for all those frustrating symptoms of his. Relief quickly gave way to my question of what exactly is Parkinson’s, and what does it mean for us?

 

I set out to learn. He did the same. But we did not talk to each other about our findings. I thought Gil was just taking a long time to process the diagnosis. He thought I was in denial and not interested in understanding what having PD meant.

 

Neither of us brought up what it meant for us, as a couple. We didn’t talk about what each of us thought was ahead and how best to tackle PD together.

 

Gil didn’t hesitate to say that he was feeling this or that way because of Parkinson’s on any given day. But he never seemed to want to talk about what it meant to him – only that he was determined to live in the moment because he did not know what the future would hold.

 

When I mentioned things that I had read about PD, I got the distinct feeling that whatever it was old news or did not pertain exactly to him.

 

He had become manic about researching his condition. Whatever I learned seemed inconsequential. He had the medical background. I did not. He had Parkinson’s. I could never understand what it was like. I should not even try, his tone of voice and body language told me. PD was driving a wedge deeper into our relationship.

 

Looking back, we should have been able to give each other an appropriate length of time to let the diagnosis sink in and gather information about what could be ahead. Next should have been a conversation about what it meant to us, separately and together. Instead, misunderstanding whacked the wedge further into our marriage.

 

It took almost two years before I went to a doctor visit with my husband. I thought Gil never wanted me there.

 

He always seemed to be asserting his independence. He thought I gave higher priorities to our children than to him and his PD issues. We were wary and stalemated.

I broke the impasse, crying that he was shutting me out of his life so completely that he didn’t even want me attending his doctor visits.

 

The “shut-outs” had been coming faster and faster, I felt.

 

His violent dreams, which began some five or so years before diagnosis, had sent him to another bedroom. Yes, I missed him greatly in bed, but I could now get a decent night’s sleep. He said separate beds eased his worry about waking me up with his active dreams. So separate bedrooms was worth it, from my point of view and his.

 

His upstairs home office got traded for the neighborhood cigar bar. I missed him around the house, but I did not have to worry about him going up and down the stairs or the cigar smoke and mess on the lanai. He said he enjoyed the camaraderie of his cigar smoking friends.

 

Gil jumped into Parkinson’s with both feet: getting trained to help others with PD, writing a blog, voraciously reading about Parkinson’s, attending patient-supports, kicking off a 9-month long PD course, speaking at support groups and Rotary club meetings, meeting with fellow Parkies to share experiences.

 

He had always kept busy with part-time jobs after retirement. That wasn’t so new. But now he just wanted to be around people in the Parkie community. I was included in these new friendships and activities only when it would seem awkward for me not to be there. I still had my friends and tennis community, and surely this was a phase that would pass, or so I thought.

 

I felt more and more like a prop: Expected to smile and be at his side when he wanted me there. Expected to host and attend events that were important to him, not necessarily to us. I never felt needed, except for PD-related things.

 

In exasperation one evening, I flung my glass of Kendall-Jackson Chardonnay in his face. “Just go be with your PD friends,” I yelled.

 

I felt more and more like his maid: Expected to cook his meals, do his laundry, cut his food, help him get dressed, put on his medication patches. Expected to give up my tennis at the spur of the moment to do something he thought needed to be done right then.

 

I felt less and less like a wife. I felt very used and unappreciated, and certainly not loved. I was quite willing to do things that Gil needed me to do, as long as I was getting something good out of the relationship, too.

 

How had he become so cold, self-centered, arrogant, impatient and quick to jump to conclusions? He was no longer collaborative, sharing, sensitive, caring and loving. We were no longer married. We were co-existing…and not very amicably.

 

Trust had become a major issue for us. Gil began sneaking around to avoid what he said he thought would become major “justifications” or “flame ups” to me.

 

When he wanted to use another brand of bath soap, for example, he purchased it himself and tried to sneak the package into the house under his coat. For me, that translated into not being able to trust him to have a simple conversation with me. Why couldn’t he just tell me he wanted me to buy another brand for a change? Soap was such a minor thing. And worse, what else was he sneaking around about?

 

In angry desperation, I said I was not going to continue to live like this. I wanted out. A divorce. “In sickness and in health” did not mean I was to be an unloved servant. Let him deal with whatever PD had turned him into. I was not going to spend the rest of my life in a relationship with someone who did not love me.

 

I saw his changed personality as no longer caring about our marriage or making any relationship work with others who did not operate or see things as he did. He had become hardline and unforgiving.

 

I understand that a person cannot separate themselves from their condition, but Gil seemed to have no room in his life for anything or anyone not associated with PD. He turned to those who agreed with him, at all hours of the day and night. I turned to my friends.

 

Enter Wonderful Counselor. She was able to help us see that our issues went back further than PD, and that if they were dealt with, we could tackle PD together.

 

All those “I choose not to fight this battle now” decisions probably had been the right thing at that time in our marriage, but they actually had gotten us in the habit of not completely sharing the way we felt with each other.

 

We also came to realize that some PD medications – beyond the basic stress of an incurable disease – were making our marriage even harder.

 

In retrospect, much of Gil’s compulsiveness was related to the dopamine agonist he was on. He tried two. Both agonists have been ditched.

His behaviors included impulsive spending (like buying a new car without consulting me or the family budget), increased sexual libido, feelings of self-importance, the need for constant praise and being overly enthusiastic about whatever his latest endeavor was. His daughter once asked me in confidence if he was OK because his recent phone conversations with her were uncharacteristically long and jubilant.

 

Gil and I now joke together about him being “too close to the edge of the diving board” when one of those over-exuberant occasions presents itself, although it happens much less frequently.

 

Whatever lies down the road with Parkinson’s, this care partner is very glad she has a therapist on speed dial.

 

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Lesson Learned:

A social worker/therapist is a very important part of a care team – for both Parkie and care partner – because the medications and stress of Parkinson’s take a tremendous toll on a marriage. Even if one thinks the marriage is solid and open, it’s worthwhile having several sessions to be sure there are no stumbling blocks as a couple faces their new “PD life” together.

 

Uncategorized

“COUNTER PUNCH” CHAPTER 8

 

Chapter 8:

Care-Partner Abyss

 

Who am I (Struby Thelen) to be writing about care-partner stress? I’m a relative newbie at three years post diagnosis.

 

Many of you have been at it much longer. Youknow about living in the Parkinson’s chaos. You’ve lost jobs, freedom, dreams, well being … and the spouse you knew so well. I’m learning as I go, trying to prepare for the journey ahead.

 

I believe that God does not give us more than we can handle, and that God helps those who help themselves. I have faith that He will give me the courage and strength to do what needs to be done when the times come, and faith that I will have done what I can to make the best of my and Gil’s life together.

 

I am a planner. I am most comfortable knowing or setting a goal, exploring the options for reaching it, thus having an idea of likely outcomes. I do a worst-case analysis first (to the great chagrin of my husband), then best-case analysis and options in between. Just knowing that I have plans in place for the most probable outcomes gives me a wonderful sense of ease.

 

As Gil loves to say, Parkinson’s is the worst possible disease for someone like me to manage. He is SO right. Nothingis certain. Nothingis the same hour-to-hour, much less day-to-day. Nothing(a mood, an ache, an urge) can be fully explained. The end result is rarely known, and certainly there is no “probable” path.

 

PD is a condition of rigidity, and I have to become infinitely flexible to deal with it. Gil and I both are continually learning what situations stress each other and ways to reduce them, so our life together will go more smoothly.

 

For me, that means giving up knowing so many details, since planning for potential outcomes is pretty useless; giving up trying to keep my surroundings so neat and organized; giving up thinking I can do it all myself, and focusing on the here and now with my husband.

 

Go with the flow:

 

Because so many ups and downs in a Parkie’s day, I have an almost unlimited number of “if – thens” continually to plan for. It is exhausting. This “planning” is the hardest thing for me to let go. I keep telling myself to simply be prepared for whatever happens next.

 

4I build in more time to prepare for an activity, in case Gil needs me to do something for him that I might not be expecting.

 

4Some PD medications can cause drowsiness. Soon after going on Sinemet, Gil would have to turn the driving over to me when he got suddenly sleepy. I now brace myself to do more of the driving, even though I’d much rather be the passenger-navigator and read, talk or sew. I also glance at him behind the wheel more often to make sure he hasn’t unknowingly nodded off, as he did once on the interstate.

 

4If Gil decides it is less stressful for him to take the long route home, I take a deep breath and squelch the urge to say it would have been faster to go another way. For him, keeping moving is more important than fewer miles or fewer minutes.

 

4Some days Gil moves more slowly. His mental speed is slower. His physical movements are slower. He cannot multi-task as he used to. I routinely build in extra time for him. For example, if he says he’ll be home in 2 hours, I add an additional 30 to 45 minutes before I actually expect him to pull into the garage or before I try to check in with him.

 

4Traveling is more stressful for Gil: Where is the closest restroom going to be? How can I pack all the things I might need? I now try to carry more of his items and oversee both our belongings through airport security, for example. I accompany him on business trips, just for fun and to make sure I’m there if he needs something, though I will have no role at the destination.

 

4Gil and I have synced our phone calendars, so each of us can know what the other’s schedule is before making plans.

 

4I try not to talk as much to Gil about weighty subjects when he is driving, so he can concentrate on where he is going and the traffic around us. I try to plan my need for details around what he is doing or feeling at the time.

 

4Gil was worried one day because he was going to have to fill out a bunch of papers and I was not going to be there to do it for him. I suggested he matter-of-factly tell the person that he had Parkinson’s, and they would have to write his answers since his handwriting was no longer legible. It must have gone better than expected, because he has used similar lines since then, and others have followed through calmly and respectfully.

 

4I enjoy knowing details because they give me specific information that I can use to formulate my plans, decisions, whatever. But the particulars are often lost or forgotten by someone with Parkinson’s. I am learning to operate with less information and to be more forgiving when things are forgotten, and Gil is learning better to put up with my need for specifics and my reminders.

 

Live with clutter:

 

Neat surroundings put me at ease. Clutter is stressful.

 

4I try to give Gil the space to do as much for himself as he can. He had taken over a bathroom that I thought needed to be clean in case company drops by. His back-up bathroom now is a little-used one. I rarely go into it, so I don’t have to look at the clutter that would drive me crazy.

 

4We’ve added more Parkinson’s “stuff” in our household. Weighted tableware now nestles beside the forks and spoons in the cutlery drawer. I’ve trashed little-used glassware to make room for his handled glasses and mugs, which are easier to hold.

 

4Cigar smokers deal with a lot of natural clutter: home humidor, traveling humidor, cigar cutter, multiple lighters, butane cans to refill empty lighters, cigars, cigar wrappers, cigar bands, ash trays and ashes. Gil tries to keep his lanai “office” neat, but many of those items that he used to keep tucked away are in plain view. Putting them away would mean him taking many more steps around the house, and I try not to make him feel obligated to get up and down from a chair any more than he feels like it at any given moment.

 

4Instead of trying to keep “public” areas of the house neat all the time, I do a sweeping pick-up just before company arrives. Unexpected drop-ins will just have to understand that that foot-stool or small table is there to assist Gil, even though it does not fit with the decor.

 

4Clothes don’t get picked up or hung up as often as they did before. So be it.

 

I am not Superwoman:

 

Multi-tasking used to be a specialty of mine. I simultaneously and easily juggled being newspaper editor’s wife, middle school PTSA officer, elementary school PTA president, Cub Scout den leader, assistant Boy Scout leader and a member of multiple tennis teams. I expected perfection from myself in every role. These days, my outside responsibilities are significantly reduced so that I have more time for Gil.

 

4Nurturing the “us” in our marriage is very important to the journey. I continue to evaluate things on my to-do list and tackle those that I think are most meaningful to our marriage, and hand off or ignore the less-important ones. Spending time with him, for example, is more important to me than keeping the house as clean as I once did.

 

4I still need to vocalize my stresses earlier, so Gil better understands why I respond the way I do.

 

I have always had a good sense of direction, but on a recent visit to Bethesda, MD, Gil got out of the car at the restaurant entrance and I drove in search of a parking spot so he would not have to walk so far. I had never driven in the area and finally found a parking garage some five or six blocks away, on a side street of a side street. I got turned around walking back to the restaurant. Frustrated, I called Gil for the address, but he did not answer because he’d left his phone in the car. After finding the address online on my phone, I got to the table about 30 minutes later.

 

The next day, Gil asked if I would drop him at the airport curb with our bags, return our rental car and take the shuttle back to the airport. I said that since he was used to driving in that airport, I’d manage the bags instead.

 

The following day, I could tell Gil was annoyed about something. When he said he was frustrated because I had him return the rental car, I burst into tears. I had been so stressed about uncharacteristically getting lost walking to the restaurant, all I could think about was: What if I get lost trying to find the rental car return and we miss the flight home? If I’d explained why I wanted him to return the rental car instead of me, he would have avoided being piqued.

 

4Support networks are truly important. While I am not comfortable – at least right now – in joining a care-partner therapy group, I am very thankful for PD support groups, where ideas and resources can be exchanged among Parkies and care partners, and for private therapy to help with specific issues.

 

4Gil was always the big-picture partner in our marriage. I was the carry-out-the-plan person. Together we are assembling a group of advisors (financial, tax, legal, for example) who I know I can rely on when the time comes.

 

4Down the road, I am prepared to ask others to help me help Gil. We are being pro-active in exploring options for down-sizing that include being closer to family and places that offer graduated steps of assisted living.

 

Together is always better:

 

Gil’s and my journeys will be different, but we no longer shut each other out. Parkinson’s does not define our “new normal” life together, although it shapes it.

 

4Gil has gotten to know more of my friends and has introduced me to more of his. I am blessed to have new good friends just because our paths crossed through Parkinson’s. Gil has even attended a monthly meals-prep session that I’ve done with friends for more than 10 years to see first-hand what it is all about.

 

4His energy levels vary and we can’t do some things we used to enjoy doing together. That Parkinson’s spinning class at the Y will improve my health as well as his, so I go with him when my tennis permits.

 

4We have significantly more common goals these days and are much more respectful of the activities that are meaningful in each other’s lives. Gil still immerses himself in his community and PD work, and I am included in activities that are important to him, like writing this book. He understands that tennis is a large part of my social and exercise life and will attend a match occasionally to cheer my team on.

 

Early on, I was asked what it felt like to be a care partner. I didn’t know because in those days I didn’t feel like a care partner. I didn’t feel enough a part of his life to understand what he was going through, and ways to help him were fairly straight-forward.

 

PD has progressed and I have a much greater sense of what he needs and expects from me. And I know he has a better understanding of what I need and expect from him. That knowledge, thanks to our therapist, has helped relieve a significant amount of stress for both of us.

 

After a support group meeting at which Gil spoke, a woman came to me with tears in her eyes. In a cracking voice about her husband, who has Parkinson’s, she asked “What can I do to help him?” she asked in a cracking voice about her husband, who has Parkinson’s. I responded with  “Ask him what he’d like for you to do.”

 

Parkies struggle to maintain their independence and not be a burden to their loved ones. For care partners (and family and friends), assuming and doing too much can rob independence and doing too little can make your partner feel like he has to beg for help.

 

I’ve found that asking if Gil would like for me to help with his socks, for example, gives him the freedom to say “no” – when he’s having a good day and can do it himself – or “yes” – if he’s having a bad Parkie day.

 

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Lesson Learned:

 

Care partners need to understand their own stress points and find ways to reduce them, while being respectful of what their Parkie’s limits are at any given time.

 

Uncategorized

“COUNTER PUNCH” CHAPTER 9

 

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.

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Lesson Learned:

Living the “vertical” life means exercise, and plenty of it. Try the many options to f

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.

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Lesson Learned:

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

Uncategorized

“Counter Punch” Chapter 11

 

Chapter 11:

A Better Road

 

We all die. My question is under what circumstances.

 

Like Tom Graboys, I want my last days to be joyous, surrounded by people who matter to me, people I love. Let there be laughter, storytelling, music and wine.

 

I will raise my glass to toast the the words of Mario de Andrade in “The Valuable Time of Maturity.” (Chapter 5)

 

My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.”

 

I want my friend and collaborator Kirk Hall with me at the joyful end.

 

Kirk is a bear of a man. That, and his rumbling voice, command attention. He’s usually the smartest guy in the room, and people know it. I do.

 

Kirk was and is a marketer. His product now is a cause: better lives for fellow Parkies. He blogs and writes books about PD, his best known being “Window of Opportunity.”

 

We met electronically in 2015. Each of us was urging the Parkinson Disease Foundation to make palliative care that year’s topic of concern. PDF did. We each wrote proposals.

 

Kirk and I were together for the first time in Denver in October 2015 for an international meeting of health care professionals, PD patients and their care partners. The subject was reshaping palliative care specifically for Parkinson’s.

 

The council of Parkies and care partners urged far-reaching changes in PD care. Kirk and I were principal authors of the final report that was published in the online journal Nature in 2017. In it, we invoke the memory of Tom Graboys and his clinical greatness. Excerpts from our report follow:

 

“The council endorses palliative care as an approach to the care of Parkinson’s disease patients and their families that seeks to reduce suffering through spiritual, psychosocial, and medical support. This approach should start at the time of diagnosis, as this is a very challenging time for patients and care partners; includes better emotional support, educational resources, and closer follow-up than is currently standard; and continue through end-of-life care and bereavement…

 

 

 “The Graboys’ allegory contains many of the early stage recommendations of our own prescription for PD Palliative Care and is based on the approach Graboys took with his own patients. While such an approach may not fit every physician or patient we hope, it provides some useful examples of patient-centered care for PD.

 

 

“We envision a new, improved approach to Palliative Care based on a ‘three-legged stool’ including the patient’s primary care physician and neurologist (leg 1), a PD palliative care team (leg 2), and a PD support entity (leg 3). The ‘three legs’ are meant to provide support for patients, care partners, and families throughout the PD journey.

 

“Early stage: diagnosis to 5 years (honeymoon period)

 

“Given confusion and misperceptions about palliative care, we suggest using the term ‘supportive care’ and discussing this concept as PD Life Enhancement, or something similar. Palliative care should provide a comprehensive, coordinated, and consistent approach for the medical and PD support communities designed to maximize quality of life for patients, care partners, and families starting at diagnosis and to reduce stress for the duration of the disease and bereavement period.

 

“The key points for diagnosis were included in the Graboys allegory. Another important element is sharing informational resources. We recommend scheduling follow-up a month after diagnosis since many patients are ‘shell-shocked’ and unable to absorb much beyond the words PD. This is an opportunity for the doctor to assess how the patient and care partner are doing, ask if they have reviewed information resources, and answer questions.

 

 “We recommend an appointment a year after diagnosis to assess the patient’s and care partner’s ‘readiness’ to be provided with additional informational resource. Most people should be ready at that point and some may have already begun this process on their own. If not, we recommend discussing why they are not ready.

 

“Some patients take the ‘what I don’t know won’t hurt me’ approach. It is important to share that in general, patients and care partners who do best in managing PD take ‘ownership’ of it so that they can properly advocate for themselves and make good choices.

 

“We recommend participation in self-efficacy or chronic disease management education programs. This is also a good time to revisit the potential benefits of joining a support group. The doctor should have a working relationship with regional and local support groups.

 

 “Middle stage: 5 years to advent of symptoms that substantially affect daily living

 

“The middle stage is a crucial time for patients, care partners, and families. It is a time when learning can take place relative to late stage. Plans and decisions can be made to make the later stage easier. Wrestling with these issues, including faith, can create acceptance and peace of mind, making the last stage of the journey far less stressful. Tasks should include:

A personal plan for taking ownership of possible outcomes, including the possibility of financial challenges.

Develop end of life wish list and legal documents including advance directives.

Discuss with doctor what his/her role will be in end stage.

Discuss care partner plan for assistance and self-care.

Begin assessing need for in-home safety and for equipment.

Consider counseling to address faith/spiritual issues or concerns.

 

“Many patients, care partners, and families miss this extremely important opportunity for a variety of reasons. They may not have as much warning as they think before they are in the thick of late stage and end up scurrying around to find resources, fighting among themselves at a time when they need to be focused on caring for each other. They may not want to face the inevitable decline of their loved one and the difficult decisions this entails, so they take the ‘ostrich’ approach by sticking their heads in the sand. PD palliative care clinics may have value in helping families in this stage.

 

 

“Late stage: advent of significant disability/hospice to death/bereavement

 

“In our model, the late stage becomes a matter of implementing plans and preferences identified in the middle stage including hospice when appropriate. Legal paperwork will be available to minimize confusion, misunderstandings, or other ‘bumps in the road.’ Of course, it is not likely that all developments can be foreseen and planned for, but these should be the exception. If the plan includes contingencies based on the nature of specific health issues as they unfold, there can be ‘course adjustments’ as opposed to confusion and stress related to confrontation of unanticipated issues.

 

 “From our perspective it seems that many neurologists are uncomfortable remaining involved after they can no longer ‘fix’ their patient. Training in palliative care or involvement of palliative medicine specialists could help remedy this issue.

 

“It is extremely important to be mindful of care partner stress/burnout at this stage, and this is an area where a palliative care team could and should add great value. The team needs to be aware that the care partner can become so overwhelmed that they do not take the time or have the energy to reach out for help.

 

“Medical community proposal

 

“We proposed a fundamental shift in the mindset and training of doctors starting in medical school to facilitate the changes discussed, including getting to know patients and care partners beyond their medical records and the importance of remaining engaged in late stage to help ensure a ‘successful transition to death.’ We would describe this as one in which the care partner, family, and medical team can feel at peace because they did everything possible to honor the patient’s wishes about how he/she wanted to die.

 

 

 “Another recommended area of focus for medical schools is the ethical aspects of working with patients who would be better served elsewhere. This is a sensitive subject because it shines a spotlight on doctors who choose to continue treating a patient despite knowing better options exist. We have seen many patients in our support groups receive inappropriate treatments or be incorrectly told there is nothing more to offer by doctors without PD-specific knowledge or skills.

 

This, I believe, is a Better Road for the Parkinson’s journey. I hope you do, too.

 

-30-

 

 

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

“Counter Punch” Epilogue

 

Epilogue

 

I sat with 800 other Parkies and care partners at a Davis Phinney Foundation pep rally on a balmy Florida morning in 2017.

 

I heard a word that electrified me: persevere. “Persevere against the eroding power of PD,” the speaker said.

 

Tim Hague Sr. also challenged me to consider the powerful role “communities” play in a person’s life. He is a PD advocate/educator/motivator living in Winnipeg, Alberta.

 

Hague is best known for 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 the race 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 referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.

 

I counted the communities in my life: Immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; Methodist church, The Portico; Rotary International; PD support group members; Florida newspaper editors; Golf group I once belonged to; Duke friends; Milwaukee Country Day School classmates. The list goes on.

 

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

 

My life as a newspaper editor was about building strong, resourceful, resilient newsrooms committed to serving their geographic communities with accurate, timely and compelling stories.

 

My commitment to the Parkie community is service through reporting and advocacy onwww. shufflingeditor.com. “Service Above Self,” the Rotary motto, speaks to my deep investment in bringing PD SELF to the Tampa Bay region.

 

My friend Rich Harwood, president of the civic engagement Harwood Institute, wrote about my community commitments when I retired from the Tampa Tribune in 2006:

 

A good man, Gil Thelen, the publisher of The Tampa Tribune, retired last week, and it’s worth pausing today to think about his work and our own work. In my travels, I have known few people like Thelen who have been able to so authentically combine a sense of integrity, grittiness, innovation, and commitment to his profession and public life….

In a statement he sent around to colleagues and friends last week, Thelen used the word “joy” to describe his work. He said, “There must be joy in making the paper if customers are going to find joy in reading it.” He then called his colleagues “joy makers.”

 

Thelen is 67 years old. I don’t know very many people – of any age – who think of their work as making joy. Indeed, think about the words we usually ascribe to the topsy-turvy world of the news media; two that come immediately to mind are “sensationalism” and “hype.”

 

I work in two geographic and Parkie communities. One is 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.

 

We moved to be closer to family.

 

Struby is from Macon. Her brother Neil Struby and sister-in-law Hazel Struby live there, as does Niece Hazel Caldwell in nearby Forsyth, GA.

 

My brother Neil Thelen and family live two hours away in Atlanta.

 

Struby has potential help should my Parkinson’s progression go badly, such as severe dementia. I preach preparedness. I need to live it.

 

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). The group comprises eight Parkies and their care partners.

 

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

 

“We will share and learn from one another’s action steps, such as second-and-more opinions, off-label medications, busting through bureaucratic barriers, and workarounds for diminished skills and loss of control.

 

“We will persevere. Promise made. Promise to be delivered.”

 

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 of the University of South Florida’s Zimmerman School of Advertising & Mass Communications.

 

The unique purpose of MOPD to deliver locally actionable information and resources to newly diagnosed Parkinson’s patients and their care partners. Both are often overwhelmed with complex information about treatment alternatives.

 

The heart of MOPD is a live database of crucial resourcesthat 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 believethat 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 501 C. 3 approval in April, 2018. MOPD has 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 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 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.