Palliative Care, Parkinson's Disease

It’s Time for a Tampa PD Helpline

Science writer and Parkinson’s patient Jon Palfreman sets out this concise description of the disease that over one million Americans live with …and die from:

“… 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, writes reviewer Doug Clifton, former editor of the Miami Herald and PD 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.

How aware of their disease are PD suffers? According to a 2014 Harris survey:
57% feel informed about how PD progresses.
46% feel informed about treatments for non-motor symptoms of their disease.
54% feel informed about treatments for motor symptoms.

In other words, stunningly few PD sufferers understand what’s in staring them in the face today and what’s ahead for them.

I am not blaming doctors for this patient ignorance. Doctors are compensated for diagnosing disease and prescribing remedies. They have no financial incentive, much less the office resources, to educate patients about PD and answer everyday questions from patients.

Patients are asking questions but finding few answers, especially 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 classes? Is anyone local offering that boxing therapy I saw on Sixty Minutes? Is there a young-onset support group in our area?

In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations effectively provide broad stroke answers, not geographic specific ones.

Why not provide a Tampa Bay answer line to recommend local resources PD patients nee to address their specific concerns and questions?

This multimedia clearinghouse, call it the Parkinson Connector, would be a one-stop shop for solutions. It would assemble lists of certified and licensed providers of care and share those lists with patients.

Patients, in turn, would be obliged to “own” their disease and make decisions and take action based on the provider lists. The Tampa Connector would not be a treatment provider. It would be a crucial link between doctors and the needs of their patients.

Physicians could recommend the connector to patients. At diagnosis, doctors would provide patients a succinct and jargon-free brochure that answers initial questions and concerns and directs patients to the connector for more information.

Imagine Rotary International providing seed money for this start up. District clubs would make it a priority project and spread the word in the community. If successful, the model could be duplicated in other Rotary locations.

The ideal connector is an existing, non-profit medical care organization with the infrastructure and patient experience to integrate the PD initiative into existing operations. Supplemental resources, of course, would come from a grant.

The connector proposal addresses real needs with the promise of great service to people who deserve guidance, direction and validated information.

This proposal is bold and complicated in operation, especially the marketing and public information aspects. But it is simple in strategic concept: connect people with daunting challenges in everyday living with existing local resources to meet those pressing needs.
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NPF response from Leilani Pearl, Vice President, Marketing & Communications, National Parkinson Foundation:
“I saw you new blog post this morning. As I mentioned on the phone, we do have a national Helpline to help people find resources in their area, including Tampa. The # is 1-800-4PD-INFO (473-4636) and the link to search by state is here: http://www.parkinson.org/search.

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Beer, fatigue and assorted short takes

I have burdened readers with long posts recently. As penance, I offer several short takes from my save file. Enjoy.

Partners in Parkinson’s has a neat quiz with great information nuggets. More than half of PWP say they are uninformed about the progression of the disease and treatment of both muscular and non-muscular symptoms. Scary but more evidence of the need for an organized, holistic system of PD care.

http://us3.campaign-archive2.com/?u=e6df77ba4568468be21042839&id=83feec455b&e=cd0ae0979d

My friend and fellow Parkie Jerry Iwerk, a beer lover, absolutely loved this article touting the “therapeutic” benefits of beer on PD. Consume at your risk.

http://www.ibtimes.com.au/drinking-beer-slows-down-alzheimers-parkinsons-disease-1417192#.Vil6pPArJUp.facebook

Fatigue is a common complaint with PD. The Parkinson’s Disease Foundation has made it a research priority. They offered this interim report.

http://blog.pdf.org/2015/08/12/you-asked-were-answering-fatigue-in-pd/

Depression is a fellow traveler with fatigue in PD. The National Parkinson Foundation issued this report on depression:
http://www.parkinson.org/Improving-Care/Research/Parkinsons-Outcomes-Project–Report-to-the-Commun#.VZUPiU0LO5Q.mailto

My friend Kirk Hall recommends an article on end of life discussions at http://journals.lww.com/neurologynow/Fulltext/2015/11040/Can_We_Talk___People_who_discuss_their_end_of_life.22.aspx. says Kirk; “Covers important topics like the importance of doing this, the importance of starting early, honoring the wishes of the patient, getting reluctant parents to talk, the role of doctors, explanation of terms and more! Very, very good!”

Parkinson's Disease

More on “Brainstorms” book and more on Exercise

I have touted this book in a previous post. My former newspaper colleague Doug Clifton adds perspective in this insightful review for the Miami Herald.

What happens when an award-winning science writer is struck by a disease he would ordinarily be writing about? Jon Palfreman’s Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease is the answer.

Diagnosed with Parkinson’s in this book 2011, Palfreman set out to learn all he could about this mysterious ailment that defies simple description.

His one-paragraph attempt comes close:

“… 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.

Parkinson’s affects 1 million Americans, 7 million worldwide. It is a disease that disproportionately strikes older people, so it is projected to touch even more as the population ages. For reasons unclear, the brain’s natural production of dopamine — a neurotransmitter that sends signals to other nerve cells — comes under attack and Parkinson’s symptoms are set in motion.

Palfreman treats his readers to a complex but cogent explanation of how the process works — or, more accurately in PD — doesn’t.

Like many PD sufferers — actor Michael J. Fox once among them — Palfreman wouldn’t, at first, disclose his ailment. He soon overcame that reluctance and plunged into his research. What resulted is a deftly crafted and authoritative literary journey that takes his reader from James Parkinson’s 1817 discovery of the “shaking palsy” to a worldwide Parkinson’s symposium nearly 200 years later — with many stops between.

Among them dancer Pamela Quinn, NBA player Brian Grant, cardiologist Thomas Graboys, each a PD sufferer, each a profile in courage and optimism. They share billing with an array of biologists, clinicians, researchers and doctors whose work he introduces a chapter at a time.

Parkinson’s is a neurodegenerative disease that so far has proved to be irreversible. Because the disease is slow to develop, its diagnosis often comes years after onset. Early signs are loss of smell, REM sleep disorder and constipation, all easy to overlook in older people. By the time tremors start— if they start at all — the disease may have progressed into its third or fourth stage.

Palfreman does a superb job of describing the torturous search for a cure or, at a minimum, an effective treatment to arrest PD’s progress or diminish its symptoms. Research is slow by its nature, but regulatory obstacles and drug company profit concerns slow it further.

For example L-dopa, the drug used in PD treatment since the late ’60s is marginally effective because so little of it gets to the brain, 5 to 10 percent, Palfreman says. Some current research suggests that rate could be substantially improved if research money were available to develop new drugs. That’s not likely, given the cost and slowness of research and urgency of need to combat more immediately lethal diseases.

Brain Storms is alternately optimistic and unapologetically realistic; PD is irreversible. The best hope is early detection and treatment, but early detection is rare and treatment seems to be marching in place. Still, exercise seems to help. A positive attitude goes far. Researchers are toiling harder than ever. And giving up just deepens despair.

As a PD sufferer myself, I found Brain Storms both uplifting and deeply informative. But if at bottom, what you want out of a science book is clean prose, clear thought and fascinating stories, Palfreman delivers.

Doug Clifton is the former executive editor of the Miami Herald, and former editor of the Cleveland Plain-Dealer.

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Exercise

Dr. Juan Sanchez-Ramos, medical director of the Parkinson Research Foundation, offered this clear sighted advice on exercise in a foundation publication.

Exercise and Parkinson’s Disease Many patients ask if exercise is beneficial for Parkinson’s disease. Research studies have demonstrated that exercise reduces stiffness, improves mobility, promotes better posture and benefits balance and gait. What is less clear is which form of exercise is best and how long and frequently the exercise should be done.

Aerobic exercise that increases the flow of oxygenated blood to the brain is the first and perhaps most important form of exercise. Even better is the combination of aerobic exercise with learning-based exercises. This kind of exercise will improve mobility, posture and gait, and might be neuro-protective in Parkinson’s disease. Aerobic exercises that challenge the individual to change tempo, activity or direction are optimal. For example, exercises that require balance and preparatory adjustments of the body such as dancing, skipping and cycling are highly beneficial. Other examples include: marching to music with big arm swings, sports (tennis, volleyball) and aerobic/jazzercise classes. Exercises that are especially beneficial because they promote cardiopulmonary fitness and motor learning include fast walking (including treadmill walking at different speeds and different inclines), cycling at varying speeds and cadences and swimming with different strokes with eyes open and closed.

Exercises that don’t challenge motor learning include riding a stationary bicycle at a constant speed without doing other activities and treadmill walking at a slow, constant speed. Exercises for cardiovascular, endurance and strengthening can be enriched by performing simultaneous activities such as reading, singing, or watching the news while pedaling on an exercise bike. Exercises that demand attention, repetition, progression of difficulty with spaced practice over time are the best exercise routines to promote motor learning.

Weight lifting alone is not the best choice of an exercise program for people with Parkinson’s disease especially if it’s the only exercise activity. Strengthening exercises should be done in a way that does not further increase the intrinsic muscle rigidity of PD. Weight training should be with light weights and frequent repetitions with plenty of stretching. Muscle mass decreases with aging, so it is important to exercise more to maintain muscle mass and strength. Strengthening postural muscles may help maintain a more upright posture. Integrative, functional exercises other than weight training may strengthen muscles in ways that are more beneficial to individual with Parkinson’s disease. So instead of weight lifting the patient can perform the following exercises: repeatedly rise up on ones toes, modified squats, repetitively rising and sitting from a chair, wearing ankle and wrist weights around the house or when walking outdoors. These kinds of exercises are just as effective in maintaining muscle tone and don’t increase stiffness as much as heavy weight workouts. Swimming is an excellent exercise providing good cardiopulmonary training and maintenance of muscle strength. Lap swimming doesn’t challenge balance, but because it involves a variety of movements of the arms and legs and head, it may increase coordination. The resistance of the water increases stiffness in some people but it decreases stiffness in others.
Some individuals with Parkinson’s disease have difficulty breathing while swimming, so it may not be a comfortable aerobic exercise. Swimming is best for people who have enjoyed swimming in the past before they developed Parkinson’s disease.

Exercises to lessen muscle stiffness require large rhythmical movements through a full range of motion. For example a program of aerobic exercise using music will reduce rigidity significantly. Yoga and TaiChi classes are also recommended because of increasing demands on postural mindfulness, balance and movement of all parts of the body. Other ways to decrease stiffness is to decrease stress by having fun, having a positive attitude and participation in socially engaging and learning-based activities.

One should chose a regular time in the day to exercise but more importantly one should exercise after taking a dose of medication, when motor function and mobility is best. This usually occurs about an hour after a dose of levodopa/carbidopa but this may vary in different individuals at various stages of the disease. The frequency of exercise is also important. Exercising should be done around 4 to 5 times per week for at least 30 minutes. One should strive to attain a heart rate goal that is 80% of the patients maximum heart rate adjusted for age. This is calculated as 220 minus age multiplied by 80%. So a 70 year person should target 120 beats per minute (220-70 times 80%). Exercise is much more fun if it’s done in a group, so it is recommended that patients become involve in group exercises such as dancing groups, Yoga and TaiChi clubs. Exercising with other people can make it much more enjoyable and will enhance compliance with the program. Finally, the PD patient should not forget a cool-down period after exercise. This will result in a slowly decreasing heart rate, allowing the muscles time to cool down gradually so they don’t become excessively stiff after the exercise. A cool-down period consists of the same exercise activity, but at a progressively slower rate. During the cool-down, all muscles need to go through a slow, full range of motion.

Article prepared by J. Sanchez-Ramos, with emphasis on the information provided to patients by the UCSF PD Center in San Francisco.

For more detailed information go to:
http://pdcenter.neurology.ucsf.edu/patients-guide/exercise-and-physical-therapy

Goodwin et al, “Effectiveness of Exercise Interventions for People with Parkinson’s disease: A systematic review and meta-analysis” Movement Disorders 23:631-640, 2008

Palliative Care, Parkinson's Disease

If Cardiologist Tom Graboys Had Instead Been a Neurologist

Thomas Graboys, M.D. was a beloved Boston cardiologist who struggled for many years with dementia connected with Parkinson’s disease. He died with it this year.

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

I reread the book recently. I imagined how he 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 makes PD so frustrating. Like
snowflakes, each case of is different.

When the doctor’s verdict is rendered, Parkinson’s disease, it is the day we 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 of us 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 of us received information beyond the diagnosis that day.

Commonly, we leave the doctors 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 Grayboys had had been the one delivering the news? He would have taken the time to give us a short explanation about the disease, encouragement about the therapies available to treat it, 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 exercise 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 matter. 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. Then we would discuss what we had read and the questions we had concerning it.

Graboys would also explain at that next meeting how there was an organization we 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 her needs. He said he would work closely with the organization to see that care provision was modified as needed for each of us.

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

Graboys would write out the medications he was recommending and what they were for. He would ask the patient what he or she thought was a reasonable exercise regimen within their abilities. We would discuss dietary and other lifestyle changes that would help us enhance our life. He would call it the plan.

It was the “contract” between Graboys and the patient 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 inspired hope because implicit in that plan was the message that there were things the patient could do to take control of their illness. Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan inspired hope that by following the instructions we could enhance our chances of living out a fairly normal life.