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?”
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.”)
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.
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.