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.
“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


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.




Must Read, Parkinson's Disease


Meet Dr. David E. Riley. I did recently when we were together on the Parkinson Research Foundation’s Caribbean educational cruise.

Dr. Riley, an MDS specialist, recently opened an integrated PD patient care center in Cleveland, Ohio. He modeled it after Parkinson Place in Sarasota.

His presentation on the non-motor aspects of PD was outstanding. I asked him to present highlights as a guest blogger on shufflingeditor. Read and enjoy.

Non-Motor Aspects of Parkinson’s Disease

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, etc.), but have come to realize that, for many people with PD, their non-motor symptoms can become even more of a problem.

What are these non-motor manifestations? So many have been identified in PD that they are organized into categories. They include cognitive and psychiatric complications, autonomic nervous system disturbances, and sensory abnormalities and sleep disorders. Each of these groupings comprises a number of distinct problems, although they are often interrelated.

The term “cognitive” refers to higher functions of the nervous system usually recognized by the terms “thinking”, “processing”, decision-making, memory, communication, and so on. “Dementia” refers to a loss of more than one of these capacities. People with PD are at high risk of dementia. It is an ominous development, not only due to the problems it produces, but also because it limits our ability to treat other manifestations of PD.

The term “psychiatric” generically refers to a group of disorders that physicians recognize as falling under the purview of psychiatrists, even though there are no precise divisions between these and neurologic disorders. Foremost among psychiatric complications of PD is depression, which will affect about 50% of people with PD at some point. Many people assume that it results from a reaction to disability, but depression often occurs before people even know they have PD, and is one non-motor manifestation that may precede the motor symptoms by many years. Other common psychiatric complications are hallucinations, illusions and delusions, which result from an interaction between the brain disease and the medications people take. Psychiatric manifestations of PD are frequently considered alongside of cognitive complications because they often coexist. Both are major sources of care partner/caregiver stress.

The autonomic nervous system is that part of the nervous system that functions “autonomously”, meaning on its own. It includes a variety of bodily functions governed by systems of reflexes that are not under our conscious control. Major responsibilities of the autonomic nervous system include regulation 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 of these. The most common symptom of autonomic impairment is constipation. Two autonomic problems that seem to cause the most disability are an inability to maintain blood pressure, resulting in lightheadedness and fainting, and loss of bladder control.

Sensory disturbances are an underappreciated aspect of PD. They include the loss of the sense of smell, another feature that can precede motor manifestations by years, and pain. A common sensory complication is the restless legs syndrome. This disorder occurs in about 3-4 % of the general population, but in about 20% of those who have PD.

Sleep disorders in PD have been the object of considerable study in recent years. They include insomnia, excess daytime sleepiness, and a fascinating tendency to act out one’s dreams known as REM-sleep behavior disorder. This last complication has become a major tool of researchers, because of its striking ability to predict the development of PD and related disorders many years beforehand.

Virtually all people with PD 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. People with PD should embrace this knowledge and avoid presuming that another person’s complications will necessarily happen to them, or expecting that medications will affect them in the same way as someone else. I like to compare this variability of PD to a salad bar. Even though everyone comes away with a salad, the number and assortment of ingredients is never the same in any two people.

Non-motor manifestations are responsible for much of the disability and loss of quality of life of PD. For many, non-motor symptoms represent their greatest challenge in dealing with this disease. People with PD should become aware of their own non-motor symptoms and discuss them with their doctors, in order to deal with their PD comprehensively.


A reminder about the Moving Day Tampa Bay walk benefiting the National Parkinson Foundation. It’s Saturday April 9, 2016 at the University of South Florida Marshall Center starting at 9:00 a.m.

Proceeds from the 2015 event were shared with four local PD patient care organizations:
Health and Aging Radio Show and Support Group for Caregivers and Hispanics at South Shore Coalition for Mental Health and Aging; PD Voice Therapy program at Florida Ear, Nose, Throat and Allergy; Patient and Caregiver Information Resource Forum at the University of South Florida, an NPF Center of Excellence; and Rock Steady Boxing at Bodyssey Performance and Recovery in Largo. The amount of the grants was not available.

The event is for all ages and abilities. We will see a variety of movement activities, such as yoga, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives.

My Moving Day team is Rock Steady Boxing. As I wrote on a previous post, I work out at Rock Steady at least three days a week. The program has made an enormous difference in my quality of life and sense of well-being.

Our team will demonstrate Rock Steady techniques at this year’s event.
Please consider being a part of my team or sponsoring me I encourage you to get your friends, family and coworkers involved. For more information visit

Must Read, Palliative Care, Parkinson's Disease

A Resource Guide For The Newly Diagnosed Parkinson Patient

This authoritative guide was created by my colleague Kirk Hall and  first published on his blog It is a wise and comprehensive list of existing resources. His advice deserves widespread attention.

This resource guide has been assembled by an experienced patient/caregiver group and members of the Parkinson’s disease (PD) medical/research community who share a common goal, which is to improve quality of life for people with Parkinson’s (PWPs), care partners, and their families.  A common concern of the newly diagnosed is how to find the information that they want and need.  In this brochure are links to resources that will provide helpful basic information regarding Parkinson’s, including young onset.  In the future a comprehensive guide will be available that will allow you to access a wide range of additional information.  If you are unable for any reason to obtain information you seek, there are services that will enable you to speak directly with someone who can help.

But first, our PWP/care partner members want to share a few things they have learned that are important for you to know:

  1. Give yourself some time to “process” your diagnosis.  This is a major unanticipated change in your life.  Do not give in to feelings of fear or anxiety!  Yes, your life will be different, but you will be surrounded by many people in support groups, PD organizations, and the medical community who are dedicated to making your life better!  Not to mention the support of family and friends (the same people you would support if they were going through something like this).  As soon as you are ready:
  2. Your #1 priority is to be sure you are working with a doctor that has appropriate experience, training, and education for your condition.  Do not assume that your doctor, no matter how much you may like him or her, meets this description!  Not all neurologists, for example, have movement disorder expertise that will enable them to recognize the subtle symptoms of PD and recommend appropriate medications and/or therapies.  If your doctor is not a good fit for you, or even if you are not sure and want a second opinion, we will provide information in our resource guide to help you locate a movement disorder neurologist in your area.
  3. Your #2 priority is to understand that exercise has been proven to be the single most important thing you can do for yourself to improve your condition and how you feel as well as potentially slowing the progression of the disease.  It will help you stay positively engaged and fight off the apathy that some of us experience.
  4. Your #3 priority is to take ownership of your situation by learning about PD and how you can live well with it.  This will enable you and your care partner to take an active role in the management of your condition, including providing information about your symptoms, any changes you have experienced, things that concern you, medications you are taking, other conditions you may have and more.  If you have concerns, ask questions!  If your doctor consistently does not take the time to answer your questions, find a new one!  Your obligation is to yourself and your family!
  5. Your #4 priority is to locate and join a PD support group.  “Test drive” one or two, if necessary, to find one that is comfortable for you and your care partner.  Get involved!
  6. If you are in a remote area, your options may be limited.  We know people who have teamed with a local neurologist working in conjunction with a movement disorder specialist that you can visit occasionally.  Another option is telemedicine, which allows you to receive care using communication technology.  Explore these options with your doctor to find an arrangement that works for you.
  7. Stay engaged!  The steps above will get you moving in a positive direction.  It is OK to have a bad day here and there, but own it and don’t let it turn into a bad week.  You do not have to go through this alone!


Help locating a movement disorder neurologist and why this is important

Exercise information

Newly diagnosed information

Young onset information

Help locating a support group (PWP & care partner)

Help locating a caregiver support group

Talk directly to a person who can help


Must Read

A Parkinson’s Dream NOT Deferred

A Parkinson’s Dream NOT Deferred

The more I have learned about Parkinson’s Disease (PD) since diagnosis 18 months ago leads me to four iron convictions.

1. Parkinson’s patients (PWP) and their caregivers are rarely given adequate information at diagnosis to understand their disease and know what to do next in confronting and managing it.
2. Intensive, sustained, exercise involving cardio, balance and resistance training trounces the flu-like fatigue common in PD.
3. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties.
4. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give up to the disease.

There is no place in Tampa that offers the comprehensive, systematic care required to address my four guiding beliefs. We need a comprehensive care center that offers exercise, education, nutritional guidance and psychological and spiritual support. One-stop, if you will, to do all the things that build body and soul and create community for people who desperately need it.

I devoted considerable time recently to indirectly lobbying the local Jewish Community Center to apply for a National Parkinson’s Foundation grant to create such a care center in association with the University of South Florida and Tampa General Hospital. The application is pending. It would be modeled on a New York City pilot program.

Only later did I learn an even more comprehensive patient care center exists in Sarasota, Parkinson Place. That’s within the Tampa Bay area and accessible by car in an hour or less. Take a look at and peruse their web site. You will be knocked over, I am sure.

See Parkinson Place in person. They are having an open house Sept. 17 from 4:30 to 6:00 p.m. celebrating their third anniversary. RSVP at 941-893-4188. Address 5969 Cattleridge Blvd. Suite 100. Easily accessible from I-75.
Why aren’t there more like Parkinson Place around the country? Funding is a problem. National Parkinson organizations put most of their dollars into research, not patient care. Medicare and insurance companies don’t cover most of the exercise, educational and social services offered at Parkinson’s Place. Hospitals are reluctant to invest in money-losing services. Parkinson Place, amazingly, is free.

My research has also led me to the issue of Palliative Care. PC means attending to the comfort needs of patients and caregivers who are fighting to manage an incurable disease. Many doctors are new to the palliative idea. Doctors are taught to cure not comfort as their primary mission.

Led ably by my PAIR colleague Kirk Hall, I am involved in patient-advising to a pilot palliative program for PWP and caregivers. It will be centered at the University of Colorado with two other sites.

My conclusions at this point in my journey: patients lack but deserve access to systematic care and information from the day of diagnosis. Patients are left to establish their own continuing care arrangements and palliative care team. Existing support groups need strengthening and network assistance.

This blog will follow and advocate for those issues in coming posts.