Parkinson's Disease

Parkinson’s Life Enhancement Proposal

Parkinson’s Life Enhancement Proposal

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Kirk Hall and I  are Parkinson’s patients who are members of a patient/caregiver council participating in a PD Palliative Care clinical research study as stakeholders providing ideas, input, and feedback to researchers.  The study is just getting ready to start recruiting patients and caregivers in Denver, Edmonton, and San Francisco who are approaching late stage and value the idea of assistance and support in making plans that will meet their needs and wants.  Check for details at https://foxtrialfinder.michaeljfox.org/.

The proposal below was developed by patients who live with PD and would like to assist the medical community in developing programs that will improve the lives of patients and caregivers at all stages of the disease. This post originally appeared on Kirk’s blog shakypawsgrandpa.com.

Comments or feedback will be appreciated!

Patient Perspective Proposal for PD Palliative Care

Kirk Hall & Gil Thelen

August 3, 2015

Patient/Caregiver/Family Proposal

Overview

A key question is how this new, improved approach to Palliative Care (PC) might be structured.  We are recommending a “three-legged stool” approach:

  • Patient’s primary neurologist/PC team
  • Patient PCP
  • PD support entity (in Denver Parkinson Association of the Rockies– PAR)
  • The “three legs” provide support for patients, care partners, families

For the purposes of this discussion, the PC spectrum will be divided into three stages:

  • Early: Diagnosis-5 years (typical honeymoon period)
  • Middle: 5 years-Advent of symptoms that substantially affect daily living
  • Late:  Advent of symptoms that substantially affect daily living/hospice – death/bereavement

Recommendations for each stage:

Early stage

  1. Rebrand PC as PD Life Enhancement or similar to address pervasive confusion about what palliative care is.
  • Proposed definition: A comprehensive, coordinated approach by the medical and PD support communities designed to maximize the quality of life for PD patients and caregivers.  Also minimizes stress for the patient, caregiver, and their families for the duration of the disease and bereavement period.
  1. Program starts at diagnosis.
  2. After diagnosis, doctor explains what the Life Enhancement program is and how it was designed to help them.
  3. Key points to communicate during appointment during which diagnosis occurs:
  • PD is a challenging disease for patients, care partners, and families
  • Patients who do well with the disease don’t let it own them—they own and control IT.
  • Here is a simple brochure that explains the disease.  It discusses telling your family and others about your diagnosis.  It provides a guide to local support groups and educational resources regarding Parkinson’s, nutrition, and exercise.
  • You don’t have to do this alone.  We will help.
  • Let’s schedule a follow up session at my office for a month from now to answer any questions and discuss next steps.
  1.  Key points to communicate during second appointment:
  • We have designed a cooperative Life Enhancement program with (PD support entity) that is available to provide education, assistance, and resources to make patients and care partner’s lives with PD better.
  • Here is a SECOND brochure that describes the Life Enhancement program, including how to manage the weeks and months following your diagnosis.
  • The first step is to attend one of the orientation sessions that are held on a regular basis at a convenient location. Transportation to the session you choose to attend is available, if needed.
    • It is extremely desirable that both PWP and care partner attend a session like this where they can interact with other PWPs, care partners,  and (PD support entity) staff to get them off on the right foot, hopefully precluding/reducing issues related to denial, apathy, depression, anxiety, etc.  A backup to this, if there is resistance (unwilling or unable to attend), is a DIY self-education program with comprehensive list of resources, step by step list of recommendations, etc.
    • I see that there is a session coming up on _________ in your area.  Would you like me to make a reservation for you?  I understand you may need time to process all this, so there is a number on the brochure you can call to make a reservation.
  • We can’t do this for you, but we will do it with you.  We are prepared to provide you with the tools you will need to take ownership of your future with PD.
  1. Orientation Program*
  • Conducted by PD support entity (participation by “experienced, knowledgeable patients is desirable)
  • Address needs of patients, caregivers, and families
  • Media advertising (free public service) will be needed to reach patients (and their caregivers) who are diagnosed by doctors (non-MDS) who are unaware of this program
  • Preferably live to allow interaction (some elements could be videotaped)
  • Connect them with a support group tailored to their needs (young onset, newly diagnosed, and more)
  • What Do I Do Now presentation (including what is the PC/Life Enhancement program and how will it help me/us):
    • Desirability of working with a movement disorder specialist (MDS)
    • List of MDSs in my area
  • PD 101: Comprehensive PD information (what is it, symptoms, progression, etc.)
  • Partners in Parkinson’s (https://www.partnersinparkinsons.org/parkinsons-advocate-program)
  • Davis Phinney “Importance of Exercise” presentation
  • Patient to Patient program:  offer to connect them with an “experienced” PWP who has “been there/done that”.  Could be called a “shepherd”.  Shepherd is a volunteer who is willing to be available to talk on the phone, meet in person to provide suggestions/guidance.
  • Participation in clinical research studies (why & how)
  • Resource handout
    • Recommended information websites
    • Recommended webinars
    • List of available medical devices for borrowing
    • Tremble clefs, dance, yoga/exercise programs
  1. Continue with ideas up to approximately 5 years including learning about what they will need to do in the middle stage and why it is important.
  2. Develop a plan to make as many of these services as possible available to patients and caregivers in remote/rural areas (possibly record programs and post on you tube).      

*This will require significant new sources of funding as well as a great deal of planning/coordination.

Middle stage

This stage can and should be a crucial stage because it is a time when learning can take place relative to late stage and plans/decisions made that will make this stage easier for patients, care partners, and families.  Wrestling with these issues including faith has the potential to create acceptance and peace of mind for all involved, making the last stage of the journey far less stressful.

  • Developing a personal plan for taking ownership including the possibility of financial challenges
  • Develop end of life wishes list & legal documents
  • Discuss with doctor what his/her role will be in end stage
  • Discuss options like hospice, staying at home, preferred death choices, brain donation, and more with doctor
  • Faith issues/choices
  • Evaluate in home services options, assisted living/nursing homes, etc.
  • Consider what would trigger move out of home choice

Late Stage

Ideally, late stage will become a matter of implementing plans/preferences identified in middle stage.  If the plan includes contingencies based on 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.  Bereavement would be easy to overlook, but if we are to commit ourselves to fulfilling the PD Life Enhancement “mission” as defined, we must be mindful of the needs of the caregiver and families following the death of the patient.

Medical Community Proposal

There is a need for a fundamental shift in the mindset and training of doctors (see references):

  • Starting with med school, the ethical aspects of working with patients (and not referring them appropriately) who would be better served elsewhere must be addressed.
  • Get to know patients and caregivers to a degree that enables them to be one of the “legs” of the “three-legged stool”.
  • Their role does not end when they are no longer able to prolong the life of their patient.  In this new model, they are likely to be the one patients and caregivers (and their families) will most depend on to ensure a “successful transition to death.”
    • One where the caregiver and 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.
    • This is not the current mindset of many doctors due to accepted practices and training starting in medical school.  With that in mind, PC needs to become part of med school curriculum.  Create and implement program for changing orientation of existing doctors.
  • Develop telemedicine capability that would allow palliative care services to be made available to patients and caregivers in remote/rural areas.

Unmet Needs

Upon review, it seems that none of this is the norm in our current system, so everything here is an unmet need, in our opinion.  Some of it ends up happening with some patients and caregivers (based on their personal research, recommendations from others, church counseling or other), but not based on an intentional, organized PC program.  The goal here is to achieve the outcomes described for as many as possible, not just for the fortunate few.

That said, Rome wasn’t built in a day.  Priorities will need to be established.  Programs that attempt to achieve too much too fast typically fail. We would recommend choosing priorities that have the greatest potential to positively affect the overall PC experience for patients and caregivers.  Here is a description of actions to pursue in the short term concurrently, if possible:

  1. Changes in medical school curriculums and related training.
  2. Create a PC team (similar to the UCH model) and focus on the middle stage educational piece/plan development.
  3. Track status of each patient/caregiver in late stage to ensure plan is being followed.  Assist/support/intervene as necessary.
  4. Develop and implement standard practices for initial diagnosis appointment (including rebranding).
  5. Develop telemedicine capability to reach the PD population in remote and rural areas.

 

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A Powerful, Must-Read, New Book On Parkinson’s

I knew this book would be good but not as good as it turned out to be. When you combine the skills of a trained reporter with that of a skilled documentary dramatist, then add the powerful ingredient that this person suffers from Parkinson’s disease, you get a powerful read.

Jon Palfreman has the right skills and experience to write the best book I’ve encountered on the current state of knowledge about Parkinson’s Disease. Palfreman is an experienced journalist and educator who was diagnosed in 2011. He is best known for his documentary work on Frontline and Nova.

His book Brain Storms: The Race To Unlock The Mysteries of Parkinson’s Disease (Macmillan) is the most thorough and compelling medical book I’ve read since The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee, an Indian-born American physician and oncologist.

The book’s scope extends from the discovery and naming of Parkinson’s disease by the English physician James Parkinson to the state of knowledge today about probable causes and the potential of exciting treatments to come. Throughout, he intersperses the stories of brilliant scientists who often uncovered clues by dogged laboratory work and sometimes by inspiration.

You will meet the Israeli researcher Beka Solomon, who discovered a virus that can potentially dissolve the brain lesions called Lewy bodies. You will also meet her son Jonathan Solomon, who started a small business to commercialize the use of this virus.

From the Solomon story and others like it in the book, I draw the clear inference that the big drug manufacturers are not trying very hard in the Parkinson’s arena. It appears that the cost-benefit ratio for Big Pharma favors other diseases. There are bigger profits in drugs for younger people than for the usually elderly PD population.

You will also 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: “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 she 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 traces the parallel research efforts in Alzheimer’s Disease and Parkinson’s Disease and the possible use of Alzheimer’s knowledge in finding so-called biomarkers in PD that have been developed for Alzheimer’s.

Palfreman writes vividly about the evolution of deep brain stimulation surgery and the hits and misses that have occurred as the surgery becomes more and more precise and effective.

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:
“… 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 legs syndrome, insomnia, and disordered breathing while sleeping.”

Palfreman fingers the familiar alpha-synuclein protein as the major culprit, writing: “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 throughout the brain to be a very powerful one indeed. In a story with many setbacks, this body of research gives me genuine hope, for 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.” (See my September 8 post to learn more about alpha-synuclein.)

Writing in the New York Times, Palfreman said:
“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 prove 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.”

Palfreman concludes by saying 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.”

The placebo effect could explain why exercise is such an important factor in Parkies having the feeling of well being after regular exercise sessions

The third is recognizing the importance of non-motor symptoms such as cognition.

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”

Personalized medicine particularly intrigues me and has been something I have focused my recent efforts around. An example would be Parkinson’s 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.

See my August 27 post for more on this integrated approach versus the piecemeal efforts so common today in Parkinson’s treatment. The integrated will also be tested in Denver and two other cities with a government grant. I will write more about this effort in October.

Brain Storm is a compelling book. It is a must read for Parkinson’s sufferers.

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Eat your veggies, Parkie

Diet and exercise. Diet and exercise. Those are the two prescriptions beyond medication neurologists often offer Parkinson’s patients.

Diet was the agenda topic this week at Parkinson Place. Dr. Juan Sanchez-Ramos, medical director, chose food for the weekly educational session he has with members at this model of integrated care for PWP in Sarasota. Sanchez-Ramos, a relaxed and low key USF professor, is in residence every Wednesday for his elderly students who pay nothing for the services offered at this unique facility.

His key message is that most of what is known about diet and PD comes inferentially from epidemiological studies of large populations of people. Unlike drugs, there is no financial incentive to do large scale tests of any single dietary factor, such as fruits and vegetables.

Nonetheless, he squeezed some guidance from the epidemiological research reviewed in a article in the journal “Frontiers in Aging Neuroscience.”

“A well-balanced diet rich in a variety of foods, including numerous servings of vegetables and fruits…and moderate amounts of omega-fatty acid, caffeine and wine may be neuroprotective,” the article says. Neuroprotective means limiting damage to nerves before and after the onset of disease.

Alcohol is neuroprotective in moderation (two or fewer glass of wine or the equivalent}. But in excess it can increase the risk of PD.

The low-fat Mediterranean diet is preferable to the high fat diets of northern climes. The Mediterranean is high in fish, nuts, fruits, vegetables and olive oil

Sanchez-Ramos cautioned against diets high in dairy products, which have been linked to PD. The reason may be contamination of milk with pesticides, which are thought to be possible causative agents in PD.

Foods high in antioxidants get a thumbs up. Among them are: tomatoes, red peppers, potatoes, cauliflower, cabbage, artichokes, okra, kale, bell peppers, berries, pears, apples, grapes, grains, eggs, kidney beans, lentils, pecans, walnuts, hazelnuts, anddark chocolate.

The only dietary supplement Sanchez-Ramos recommends is Omega-3 oil.

A Word of Warning About Off-Label Inosine Use

I wrote recently about promising clinical trial results for the OTC food supplement Inosine in treating PD. I was tempted to buy some and try it. I had second thoughts about this off-label usage. I consulted my neurologist Robert Hauser. He was none too thrilled. His response is worth reading:

“I do not advocate nor prescribe medications that are being evaluated for disease modification. Such agents are in clinical trials to determine whether they do or do not slow progression of disease and whether they are safe and reasonably well tolerated. If we knew they were helpful (positive benefit/harm ratio), they would not be in clinical trials. I would much prefer people participate in clinical trials, provide informed consent, participate in a program that has been approved by various institutions (FDA/NIH/IRB), and help ascertain what the efficacy and safety of the agent actually is. These institutions ensure that the risk of participating in the trial is reasonable relative to the potential benefit to society to discern the safety and efficacy of the agent.

“As you know, there have been many agents for which there was reason to hope that they might slow progression of disease that turned out not to do so when evaluated in clinical trials. If everyone simply went on agents for which there was hope and no one participated in clinical trials, we would never know which agents are actually helpful.”

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Dreams, Inosine and Meaning (no connection intended)

Dangerous Dreams and their Meaning
I have written a bit previously about REM sleep disorder behavior (RBD). It’s those violent dreams you act out. It might mean striking your bed partner or tumbling out of bed. I had those before diagnosis and paid no real attention–out of ignorance and denial.
In simple terms, normal people switch off the connection between their brain and muscular system when they sleep. They don’t act out dreams. RBD people lack that off switch.
Up to 60% of PD patients have RBD, as do 80 to 100% of patients with dementia with Lewy bodies and multisystem atrophy, according to Psychiatry Advisor.
Job #1 in cases of suspected RBD, the article says, is that patients should first attempt to reduce behavioral and environmental factors that might influence symptoms, primarily through practicing good sleep hygiene.
“Avoid triggers like caffeine and alcohol, and any disruptive influence on sleep–shiftwork, eating before bed, noise, and light,” Karl Doghramji, MD, a professor of psychiatry and neurology at Thomas Jefferson University, and medical director of the Jefferson Sleep Disorders Center, told Neurology Advisor.
“Meanwhile, practical measures to increase safety might include padding the walls, removing sharp objects from the bedroom, and moving the mattress to the floor to reduce the distance in case falls occur. It may also be necessary for partners to sleep in separate beds or rooms. If problems persist, a sleep study should be conducted to rule out other disorders, such as sleep apnea and periodic limb movement disorder.”
One medication proven effective in treating RD is the anti-seizue drug clonazepam. I use it and can attest to its effectiveness. Research also suggests that melatonin may be helpful, possibly “because of its general sedative effect, and anecdotal studies show that it decreases electromyographic activity,” said Doghramji. A 2015 review by researchers at the Mayo Clinic College of Medicine noted that “melatonin appears to be beneficial for the management of RBD with reductions in clinical behavioral outcomes and decrease in muscle tonicity during REM sleep.” (My previous post has Dr. Michael Okun casting some doubt on the effectiveness of melatonin in ordinary sleep.)

HOW MUCH DO YOU REALLY KNOW ABOUT PARKINSON’S?
Take this highly interesting quiz from the Michael J. Fox Foundation. You will find out, for example how many PWP feel uninformed about their disease, treatment and prognosis. You will also learn about the useful role of dietitians and various therapists.

LIVING IN THE MOMENT WITH PD
John Creveling, a PDF Research Advocate from Philadelphia, PA, was asked about his decision to live “more in the present and more in the moment.” I was impressed with his answer and agree with it personally.

Q. What does it mean to live more in the present and more in the moment?

“To me it means living every day aware and alive in the world, mindful that the time we have is limited. I take nothing for granted. There are moments when I’m painting, taking photographs, learning to play the guitar, and writing poetry when I’m so involved with what I’m doing that I forget I have PD. I want to be fully present to those moments, to experience the joy of life, the joy of living. When I’m with you, I want to be with you. Not thinking about what I did yesterday, or didn’t do. I want to have more moments of seeing the beauty around me, not focusing on the negative aspects of life. It’s strange to say this, but, PD has given me the gift of today. I truly feel blessed in so many aspects of my life.”
PDF Research Advocates Advising Trial into Nutritional Supplement Inosine
What is patient engagement? Read about how my fellow PDF Research Advocates living with PD., jBecky Houde, J.D., and Joel Grace, Ph.D., are playing a central role in a new phase III clinical trial on the potential of the nutritional supplement inosine as a treatment for Parkinson’s. Share this exciting news about SURE-PD3 (Study of URate Elevation in Parkinson’s Disease) with others in the PD community.

Here’s more from the Michael J. Fox Foundation about the inosine studies: Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s
“The Michael J. Fox Foundation’s largest grant to a single investigator thus far awarded $5.6M in 2008 to Michael Schwarzschild, PhD, of Massachusetts General Hospital for a Phase II trial of inosine, a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression.

“Today Dr. Schwarzschild and his Parkinson Study Group colleagues announced funding from the National Institutes of Health (NIH) to conduct an inosine Phase III trial at 60 U.S. clinical sites with 270 people with early-stage Parkinson’s. Enrollment is expected to begin early next year.””

“One quick, very important note: Inosine is available commercially as a dietary supplement, but patients should act with caution. Inosine has not been proven as a therapy for Parkinson’s, and, in the absence of medical supervision, it can cause serious side effects such as gout, kidney stones and possibly high blood pressure. It is critical to discuss any medications or natural supplements with your physician before taking them.”

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This One Is For Amy

Amy Shimberg is the Grande Dame of our Parkinson’s support group at Florida Hospital Tampa. She is also matriarch of the civicly active Shimberg family, a crowd of Tampa doers and builders.

Amy is the person I quoted in my last post wanting the most up-to-date books on Parkinson’s disease to read. So this post is for you Amy.

The prolific Dr. Michael Okun, prominent University of Florida neurologist and researcher, has come out with a new book about Parkinson’s: “10 Breakthrough Therapies for Parkinson’s Disease.” It is a follow-up to his earlier and very popular “Parkinson’s Treatment: 10 Secrets to a Happier Life.”

On my first, quick read, I thought the new book might be too technical for the lay reader. A second, closer read changed my mind. Okun is exceedingly skilled at writing first a general-interest narrative, then diving deep into the same material for the more technical reader.

Chapter titles give a flavor of the book’s range of topics: disease modifying drugs and biomarkers; coffee, tea, exercise, interdisciplinary teams and caregivers; extended release/novel third delivery systems, to name a few.

Okun’s definition of a breakthrough is a bit broader than I’m used to. “A breakthrough is defined as a sudden increase in knowledge, improvement in technique, or for fundamental advancement and understanding,” he writes. “Often breakthroughs occur when a formidable obstacle is penetrated.”

Okun is unquestionably optimist about progress in understanding and treating Parkinson’s and the possibilities of new therapies to slow or stop Parkinson’s. But he is also a realist about the many dead ends research has produced.

“I always share with patients and families the simple truth that our knowledge of the brain is advancing rapidly,” Okun writes. “Despite the expected failures in the majority of Parkinson’s disease clinical trials, these failures will guide us to the breakthroughs.”

A rather large bone I have to pick with Okun is his description of the sophistication of the Parkinson’s patient. “I am convinced that the Parkinson’s disease patient is possibly the most sophisticated consumer of healthcare.”

Patients he sees at his Center of Excellence in Gainesville may be that way. But patients I have encountered in Tampa do not fit that description. They are very frustrated, for the most part, with what they don’t know about treatment options.

I ran into fun facts in the book. One in particular drives my wife nuts. “Smokers have been observed in multiple studies have a lower risk of developing Parkinson’s disease, and there has been ongoing interest in nicotine as a disease modifying approach in Parkinson’s disease patients.” She is no fan of my two-cigar a day ritual. Okun’s words deflate her arguments, only in part, of course.

Okun endorses the benefits of moderate exercise. He says “… low intensity workout on the treadmill paired with resistance exercises have the potential to be the most beneficial combination for Parkinson’s disease.”

I was encouraged to read Okun’s endorsement of team-based approaches to PD patient care. It is powerful support for emerging ideas from the palliative care movement. He likes a team that includes neurologist, psychiatrist, social worker, health counselor and counseling psychologist.

All Parkinson’s disease patients should also have a general practitioner and a dermatologist involved with patient care. “The reason for involving other doctors is because with adequate Parkinson’s treatment the patient will be more likely to encounter difficulties with other medical illnesses (heart disease, prostate cancer, breast cancer, melanoma, etc.) Melanoma,for example, occurs more frequently in Parkinson’s disease patients.”

I was most surprised at what Okun had to say about the use of marijuana in PD treatment: “There is mounting evidence that marijuana may be useful for the treatment of Parkinson’s disease symptoms,” he writes. “The fundamental issue in the field is that we do not yet know which symptoms of Parkinson’s disease patients medical marijuana may be useful.”

He concludes: “I always share with patients and families the simple truth that our knowledge of the brain is advancing rapidly. Despite the expected failures in the majority of Parkinson’s disease clinical trials, these failures will guide us to the breakthroughs.”

Further: “A good method to monitor drugs that may be available as part of research studies is using the website http://www.clinicaltrials.gov. Though the cost in time and money can be tremendous for Parkinson disease drugs, there is hope that new symptom-specific approaches will be introduced to address bothersome and previously drug resistance symptoms (such as walking, talking and thinking). There is also a hope that a new future drug will meaningfullly slow disease progression.”

Okun welcomes communication. His email is Michaelokunmd@Gmail.com. Twitter is @Michaelokun. Website is http://parkinsonsecrets.com.

USF’s Hauser Explains the Possible Role of alpha-synuclein in Parkinson’s

Dr. Robert A. Hauser wrote recently in the prestigious medical journal Lancet about the role of the protein alpha-synuclein in the Parkinson disease process. Excerpts follow.

“When patients asked me when we will have a cure for Parkinson’s disease, I still say that I don’t know. But unlike a few years ago, I now add that scientists have uncovered the major part of the disease process and we can now envision what a cure might look like and what needs to be done to get there. I am referring to the fact that propagation of alpha-synuclein missfolding and aggregation seems to be at the heart of most types of Parkinson’s disease and that this process presents several attractive opportunities for therapeutic intervention…

“Nonetheless, the demonstration that aggregated alpha-synuclein is the main component of Lewy bodies, even in patients without mutation in the alpha-synuclein gene, widely implicated alpha-synclein as central in the disease.

” … Many preclinical studies have suggested that alpha-synuclein can behave in a prion like fashion, with misfolding and aggregation, and propagation from neuron to neuron by a templating process.

“…Because synuclein targeting and other potential disease modifying therapies are now rapidly being developed, we need ways to assess their effectiveness in patients and we need a pathway to regulatory approval.

“… Substantial progress is being made in our efforts to provide patients with a robust symptomatic antiparkinsonian response through the day. New medications in development include a longer acting oral levodopa formulations and acute, intermittent therapies to treat “off” episodes, such as inhaled Levodopa and sublingual asomorphine. Additional options for patients with uncontrolled motor fluctuations include deep brain stimulation, levodopa-carbidopa intestinal infusion, and asomorphine or levodopa-carbidopa subcutaneous infusion. By contrast, highly effective symptomatic therapies for disabling long term features such as balance impairment and cognitive dysfunction seem beyond our grasp, thereby really re-emphasizing the need to slow and ultimately stop progression of this disease.

“Much work needs to be done, and we should not become overconfident or complacent. However the ongoing unraveling of the alpha-synuclein story allows me to tell patients that we appear to be on the cusp of seeing disease-modifying therapies emerge from preclinical work. Seems like we are on the right track.”

Hauser is a Professor of Neurology, Molecular Pharmacology, and Physiology at the University of South Florida Morsani College of Medicine, in Tampa. He serves as Director of the Clinical Signature Interdisciplinary Program in Neuroscience and as Director of the USF Health Byrd Parkinson’s Disease and Movement Disorders Center.

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One Big Question Answered

Our Parkinson’s Disease support group met Thursday with the purpose of setting the group’s agenda for the coming 12 months. It turned out to be much more of a revelation about the nature of the disease than I had expected.

I asked the group of 25 PD patients and caregivers for a few minutes to answer the question I would address at an international neurology conference in Denver next month. The question was this: “What were you told about your disease at the time of diagnosis.” I went around the table asking each that question.

The universal answer was nothing, nada, not a thing. All that was offered were pills and return in three months or so. Next I asked: “What did you do with your news and how did you go about learning about the disease?”

For most, the next step was Googling the disease. The funny answer came from the gentleman who said quietly: “I told my wife.” Next I asked how successful the Internet searches were for reliable and understandable information. Most answers were variants of “confusing, mystifying, terrifying and unintelligible.”

I had asked the same questions of three other Tampa-area support groups in recent months. The answers were the same.

The conversation Thursday then began in small groups about what the members wanted the support group to do for them. The desires ranged from hearing from experts on various aspects of PD, to share experiences, have social occasions, feel less alone. In short, they were seeking to find understanding and meaning in their mystifying circumstances. Their unknowing produced fear.

The cast of characters in the room epitomized the range of symptoms that can occur in this poorly understood disease. There was the retired executive who struggled to teach us his understanding of how you go about writing a mission statement. There was the young-onset victim who had a little in common with the symptoms plaguing her 70-and-80 something compatriots. One of those 80-year-olds was a vibrant information seeker whose primary interest was knowing what books she could read to fill in gaps in her already considerable knowledge. Then there was the youthful, retired pharmacist who knew so much about drug interactions that she would be an expert presenter to the group in a few months.

The showstopper came when the middle-aged photographer, who until that day was expert in using Photoshop on his computer, said plaintively: “I woke up this morning, and I couldn’t remember anything about operating my computer or even how to turn it on.” There was a collective gasp.

I suddenly had an answer to the question bothering me so much: Why do doctors not tell patients anything of substance at diagnosis or hand them any publication to read so they could start understanding their condition — a booklet or similar that told them about the further information resources available on the websites of such reputable and reliable organizations as the Parkinson’s Disease Foundation, National Parkinson Foundation, Michael J. Fox Foundation and Davis Phinney Foundation. (See also my Must Read Links page on this site.)

The best I could get at my diagnosis when I pressed the question of “what does this mean and what do I do about it” was hard-eyed pragmatism: “You are 75 years old and something else will kill you before Parkinson’s does.” I was not comforted or enlightened.

Parkinson’s is such an enigma. Some can live with it 30 years or more and have few disabling symptoms. Others, like a Rotary colleague of mine, was dead within months of a galloping dementia. The cause of PD remains unknown. Symptoms are outlandishly diverse: loss of smell, frozen shoulder, tremor, stiffness, fatigue, depression, cognitive decline, anxiety, sleep disorders, so on and so on.

So what, then, can any doctor, even the most highly trained neurologist or mobility disorder specialist, really say to patients about their future. The physicians can prescribe and and modify drugs types and dosages. They can suggest exercise in a general way. They can suggest looking after your diet. They can point you to a support group. What they can’t do is give you a meaningful answer to the question of what’s going to happen to me in the long run. Bed-ridden? Demented?

I finally had my answer to why patients are told so little at, and even after, diagnosis. I checked my theory with a physician friend. He said I was right. Doctors don’t want to hold out false hope to people or provide them misinformation. They too are mostly in the dark about this mysterious disease.

I now had further proof for the theory coming out of the palliative care movement. The patient, out of necessity, must form and become the captain of a team that provides the type of support needed at each stage of the disease. That team would include the neurologist, psychologist, spiritual advisor, legal advisor and various therapists, RT, OT, etc. In that way, the person with Parkinson’s is not a victim but a vigorous advocate and a central figure in the provision of needed care. Victims cannot possibly have hope and hope is the vital ingredient in living a full, engaged communion with family, friends, community and God in this disease and decline.

My understandings about the silence surrounding Parkinson’s came the same evening as I returned to reading an important book about spirituality and personal growth. Its title is “Falling Upward”: A Spirituality for the Two Halves of Life. The author is theologian Richard Rohr, whose work I can’t recommend highly enough.

Last evening I ran across this passage that affected me deeply. “To hold the full mystery of life is always to endure its other half, which is the equal mystery of death and doubt. To know anything fully is always to hold that part of it which is still mysterious and unknowable.” At another place, Rohr says words applicable to diseases like Parkinson’s. “First there is the fall, and then we recover from this fall. Both are the mystery of God.”

Rohr also brought me back to a psychiatrist whose books I admired in graduate school, Eric Ericson. Ericson wrote about the stages of all of our lives, the last being the generative one. Many of us with Parkinson’s are or should be at this stage given our advanced age. A generative person is one …”Who is eager and able to generate life from his or her own abundance and for the benefit of the following generations,” said Ericson, “because such people have built a good container, they are able to contain more and more truth, more and more neighbors, more and broader vision, more and more of a mysterious and outpouring God.”

Parkinson’s has become for me both a medical and spiritual journey. I have no other choice but to take it and welcome it.

Gil Thelen
Executive Director
Florida Society of News Editors
Patient Advocate
Parkinson’s Disease Foundation
813.787.3886
gthelen1@icloud.com
https://shufflingeditor.wordpress.com

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TWO VERY DIFFERENT PD EXPERIENCES

 

 

I saw both sides of the PD care coin today. A caregiver new to Tampa Bay asked my advice on finding a Mobility Disease Specialist for his wife with offices close to their home. Apparently, he got my name from my PDF Research  Advocate business card.

 

He  lives in Sun City Center, midway between Tampa and Sarasota. I was of little help on the specialist, except to refer him for advice to the USF Center for Parkinson’s Disease and Movement Disorders.

 

But I was able to tell him about the extraordinary Parkinson Center 30 minutes down I-75 in Sarasota. I spent time there today. It lives up to its billing. Airy, light, open space. Plenty to read and do. Some type of educational, social, recreational or support activity every day. Colorful, computer-generated prints with a Florida motif on the walls done by 80-something, Center member Joyce Novak. As I wrote earlier, it is the kind of one-stop, continuing care facility that we need in many places but have in very, very few.

 

 

TELL THE FDA ABOUT YOUR SYMPTOMS

 

The FDA wants to hear from PWP and caregivers about their stories. Probably most of you will do so by email. You can participate in the Food and Drug Administration (FDA) Patient-Focused Drug Development Meeting on Parkinson’s disease on September 22, 2015.

 

You may attend the meeting in person at the FDA headquarters in Silver Spring, MD, online via webcast, and by providing the FDA with feedback during a public comment period.

Learn more about the meeting, how you can help let others know about the meeting, and register at http://ParkinsonsAction.org. That’s where you can provide answers to written questions. I did so in fewer than 30 minutes.

 

USEFUL INSIGHTS ABOUT FATIGUE

 

This recent PDF Explainer has excellent information about a symptom that is so troublesome for many of us: fatigue

 

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

 

DO WE REALLY NEED EIGHT GLASSES OF WATER A DAY?

 

The hardest doctor’s recommendation for me to follow for my PD is drinking eight glasses of water a day. This New York Times piece casts doubt on that guideline. I found it comforting but not convincing enough to win an argument with my MDS Robert Hauser and his strong-minded PA, Kelly Tehan.

 

http://www.nytimes.com/2015/08/25/upshot/no-you-do-not-have-to-drink-8-glasses-of-water-a-day.html?emc=edit_au_20150824&nl=afternoonupdate&nlid=52114048&_r=0&abt=0002&abg=0