Must Read, Palliative Care, Parkinson's Disease

What’s Your PD “plan”?

The “I” and “we” in this post are composites of my own experiences and those of the many Parkinson’s patients I have talked with since my diagnosis in 2014. This column is dedicated to the memory of the late Dr.Thomas Graboys, an extraordinary Boston physician who died with Parkinson’s disease. His legendary dedication to patient understanding and welfare is reflected in the care model I discuss.

Dear Doctor:

D-Day, diagnosis day, for my Parkinson’s was a disaster. Your words destroyed my rationalizations about what was causing my problems. Suddenly, I have a progressive neuromuscular disease, one that’s treatable but not curable.

I pressed you on prognosis. “At your age of 75, something else will kill you first,” you finally said. Your smile suggested humor. I found nothing funny or comforting in the words. Neither did a friend who was told on her D-Day: “You will only feel worse as this progresses.”

Another friend went to pieces after her D-Day.
choirbreathing
“My life began to unravel,” she recounted. “I became reckless, hell-bent on having a good time before the disease took complete control. I shopped libreathing

choirke crazy, partied and drank hard. I ignored mundane tasks, like paying bills and taking care of my house.”

Most of us only were told to follow instructions for beginning the medication carbidopa-levodopa and to return in three months. By that time, our response to the medication would seal the diagnosis. No other readily available laboratory test exists for PD.

That was it. Session over. No words about diet, exercise or any real information on the disease.

Your short message may be OK for other disease diagnoses you make. But I wanted and needed more from you because Parkinson’s often is a progressive wasting disease that would affect every aspect of living, as I had known it.

I wish you had said words to this effect, as Thomas Graboys did with his patients: “We are in this together. I will walk with you the whole way. I’m writing down my home number. Call when you need me.

“Here’s a short brochure providing you essential information about the disease, places to seek additional, verified information and a brief description of an organization available to you for your journey. The brochure briefly describes sharing your diagnosis with loved ones and others. I want you back in one month to dig more deeply into all this.”

You would say 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, you would say: “We will develop on that next visit what I call the ‘plan.’ ”

I wished you, my physician, would explain how there is an organization I could join that would have regular educational seminars about PD, special programs for caregivers and recommendations on finding the physical and other therapists who could attend to my needs.

You would say you would work closely with the organization to see that care provision was customized as needed. You would reduce my anxieties and provide an organizational anchor point where my needs would be met.

You would write out the medications you were recommending and what they were for. You would ask me what I thought was a reasonable exercise regimen within my abilities. We would discuss dietary and other lifestyle changes that would help me enhance my life. You would call it the “plan.”

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

Just leaving the office with that plan in hand would inspire hope in me because implicit was the message that there were things I could do to take control of my illness.

Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan would inspire hope that by following the instructions I could enhance my chances of living out a fairly normal life.

The Graboys approach and the Graboys “plan” are the exception in most clinical settings today.

The result is documented, widespread confusion among PD patients about their condition. A 2014 Harris survey of Parkinson’s patient showed that only 57% feel informed about how PD commonly progresses; just 46% feel informed about treatments for non-motor symptoms; and 54% feel informed about treatments for motor symptoms.

In other words, a stunningly high number of PD sufferers don’t understand what’s staring them in the face and what’s ahead for them.
The dedication of physicians for their Parkinson patients is not in question. In fact, as my Parkinson’s Disease Foundation colleague Kirk Hall has written, we PD patients owe the medical community a large debt of gratitude. “Many of these folks, whether they be doctors, nurses, researchers or technicians, work very hard to meet our needs in challenging circumstances (long hours, limits on length of patient visits, heavy patient loads, emergencies, bureaucracy, and unending paperwork.)”

What’s needed is a system for Parkinson’s care that those dedicated professionals can utilize. We don’t have it now but need it as soon as humanly possible

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Check two workshops for Parkies. One for breathing exercise and the second for singing. Therapists are on both to slow the progression of PD. The word comes from speech therapist Cara Bryan, a Florida Hospital-Tampa stalwart, who is leaving FHT for private practice. Her many fans wish her the best. Click each for more info.


Breathing

Chior

 

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

My Parkinson’s Crash Course

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

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

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

A Parkinson’s specialist can help. Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.

Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling) can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.

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

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

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

We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we can not only live well with Parkinson’s, one day we can end it.

Parkinson's Disease, Research, Support Groups, Uncategorized, USF

More on living well with PD

I spent time last week in virtual conversation with two very interesting people who have much to say about living well with Parkinson’s disease.

One is John Baumann, a motivational speaker now living in Sarasota. He has tamed his PD with a fierce exercise routine and steely determination.

The other is Diane Cook of Denver, a leading proponent of employing self-efficacy principles in better managing PD.

The two come from different backgrounds but converge at a common point.

Baumann, who will speak to the Sun City Center support group and guests Monday April 18, boils his message down to this:

“ Whatever hand life deals you (whether your fault or not), whatever life-changing adversity you have to endure, you still have some control over it, to not just live well, but live an AMAZING LIFE. It takes faith in yourself, discipline, determination, desire, intensity, inner strength. For me, it was having Parkinson’s disease in my 30’s; I am 54 today and have very few symptoms.”

The support group invites all Parkies and caregivers to attend this special event sponsored by the South Shore Coalition for Mental Health and Aging. The meeting is 1:30 – 3:00 p.m. at Sun Towers Retirement Community 101 Trinity Lakes Dr. Sun City Center. For additional information call Debbie Caneen at 813-892-2990

A National Parkinson Foundation grant springing from money raised at last year’s Moving Day Tampa Bay walk supports his talk.

This year’s walk is Saturday at the University of South Florida Marshall Center starting at 9:00 a.m.
The event is for all ages and abilities. You will see a variety of movement activities, such as yoga, Rock Steady Boxing, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives. For more information go to: http://www.MovingDayTampaBay.org


Diane Cook’s explanation of how self-efficacy works in PD is quite similar to Baumann’s philosophy:

“Our belief in our own capacity to produce positive outcomes from our actions determines what we are able to do with the knowledge and skills we have. Our self-efficacy beliefs are more about what we think we can do with our skills than they are about what skills we have.

“Self efficacy is about having the confidence to be able to integrate our skills into a course of action and perform under a specific set of circumstances and challenges, such as managing chronic, progressive disease. Our self-belief influences our thought processes, emotional state, motivation, and patterns of behavior. It influences the challenges we undertake, the effort we expand and our perseverance in the face of difficulties.”

Cook offers a short, intriguing self-evaluation for you to take to measure how well you are managing your condition. It’s found here:

http://projectspark.org/sites/default/files/Self-Efficacy_Brochure_projectsparkorg_1.pdf

In my reading this week, the web brought me some interesting observations from Australian Ben Basger. He is a lecturer and tutor in pharmacy practice, Faculty of Pharmacy, The University of Sydney. Here they are:

”The earliest pathological evidence of PD starts in the nervous system of the gut, medulla and olfactory bulb and spreads transneuronally to the midbrain (substantia nigra) and then the cortex. This may explain why non-motor symptoms of PD, such as constipation, hyposmia (reduced ability to smell) and rapid eye-movement sleep disorder often precede the typical motor symptoms, and why cognitive impairment is nearly always found in people with longstanding PD.

”These non-motor symptoms, together with fatigue and depression, may precede diagnosis by as much as 25 years.

“Advancing PD is further complicated by the loss of non-dopaminergic neurons, contributing to disturbances of gait, posture, autonomic nervous function, speech, cognitive function and sleep that may become unresponsive to dopamine. Dopamine replacement alone becomes inadequate.

”Although PD is a progressive disorder, deterioration is typically very slow, with considerable individual variability. The time to commence drug treatment for motor symptoms is when they are causing physical or psychological disability. It is a misconception that PD treatment is only effective for a limited time and should be deferred for as long as possible to reserve that benefit.

“All dopaminergic medications can cause nausea, gastrointestinal symptoms, hypotension, drowsiness, cognitive symptoms and impulse control disorders, but these are more common with dopamine agonists (e.g. pramipexole, ropinirole) than with levodopa/dopa decarboxylase inhibitors (LD/DDIs).

“For most patients with PD, motor fluctuations and dyskinesias (abnormal movements) are not disabling and can be adequately managed by manipulating the oral drug regimen.

”The incidence of dementia increases with duration of PD. It is characterized by fluctuating cognition and visual hallucinations. Cognitive impairment affects up to 75% of people who have had PD for at least 15 years, although the main risk factor is advancing age.”