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Shuffling Editor and the Missus fly Monday to Portland, Ore. for the World Parkinson Congress

All we are sure about on the 5-day trip is this: off with the Florida clothes and into real September clothes, such as sweaters and outer jackets.

The previews of this meeting really hit one of my PD hotspots. Self-care by patients is expected to be a topic discussed in almost every venue at the Congress.

That’s fascinating to me because I am deeply involved in the fabulous PD SELF program. That’s the one that takes 17 recently diagnosed Parkies and their care partner through 9 months of learning about the disease — plus acquiring the self-management skills allowing them to form their own health-care team and write a care plan.

The Congress will hear from a Denver-Centered University of Colorado group of about a related effort to redefine palliative care as it relates to PD. Leaders are Neurologist Benzi Kruger and his patient partner Kirk Hall. Their model incorporates an umbrella accountability and assistance third-party that sponsors and oversees the patient’s self care.

After self care, the major topic is expected to be the immune system. The question is how it can be used to slow the disease process or even prevent the disease through such vehicles as vaccinations.

I plan to post each day on things that have caught my eye or provided me new knowledge about this mysterious disease.

Here’s an excellent instructional series coming from PDF. Mark your calendars.

Are you looking for practical tips for managing Parkinson’s disease? Join the Parkinson’s Disease Foundation (PDF) newest series of PD ExpertBriefings beginning on Tuesday, September 13.

The newest series includes six free online seminars designed to cover gaps in PD education on topics such as travel, pain and sleep. And we have you to thank for the topics! In PDF’s annual survey about Parkinson’s education, 1,000 of you responded, letting us know which topics were most important. Your feedback helped form this series.

Getting Around: Transportation and Travel with PD
Tuesday, September 13, 1:00 PM-2:00 PM ET Sara Riggare, Ph.D. Candidate, Karolinska Institutet, and Rebecca Gilbert, M.D., Ph.D., Clinical Associate Professor of Neurology, Marlene & Paolo Fresco Institute for Parkinson’s & Movement Disorders at NYU Langone
Learn More & Register

PD: Financial, Legal and Medical Planning Tips for Care Partners
In recognition of National Family Caregivers Month Tuesday, November 8, 1:00 PM-2:00 PM ET Martin M. Shenkman, C.P.A., M.B.A., J.D., Founder, Shenkman Law
Learn More & Register

Pain in PD
Tuesday, January 10, 2017, 1:00 PM-2:00 PM ET Jori E. Fleisher, M.D., M.S.C.E., Assistant Professor of Neurology and Population Health, Marlene & Paolo Fresco Institute for Parkinson’s & Movement Disorders at NYU Langone
Learn More & Register

Diagnosis PD, Now What? Managing the First Few Years with PD
Tuesday, March 7, 2017, 1:00 PM-2:00 PM ET Suketu Khandhar, M.D., Medical Director, Kaiser Permanente Northern California Movement Disorders Program, Kaiser Permanente Sacramento Medical Center
Learn More & Register

Is It Related to Parkinson’s? Runny Noses, Skin Changes and Overlooked PD Symptoms
In recognition of Parkinson’s Awareness Month
Tuesday, April 18, 2017, 1:00 PM-2:00 PM ET W. Lawrence Severt, M.D., Ph.D., Attending Neurologist, Mount Sinai Beth Israel Medical Center
Learn More & Register

Sleep and Parkinson’s
Tuesday, June 13, 2017, 1:00 PM-2:00 PM ET Aleksandar Videnovic, M.D., M.Sc., Assistant Professor of Neurology, Harvard Medical School and Massachusetts General Hospital
Learn More & Register

How can you join a PD ExpertBriefing?

  • Visit our website to register for each online seminar.
  •  View live PD ExpertBriefings using your desktop computer or mobile device or listen in by phone. Phone participants can access each live seminar by dialing (888) 272-8710 and when prompted entering code 6323567#.
  • Can’t make a live PD ExpertBriefing? No problem. View the recordings on our website. In fact, the PDF library now includes 50 online seminars that you can watch anytime of day.
  • If you’re a health professional, apply for CEUs, available via PDF’s sponsorship of the American Society on Aging. Visit our website here to learn more about that option.

Register for Future PD ExpertBriefings

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Uncategorized

PARKINSON SHADOW TOPICS, AND A BOXING UPDATE

COGNITIVE LOSS

Some aspects of Parkinson’s disease are not popular conversation topics in the PD community. They are the shadow issues too delicate to cast light on routinely. Think cognitive loss and dying.

The Parkinson’s disease Foundation called my attention to a new study of cognitive loss in PD. University of Pennsylvania researchers followed 141 PD patients who had normal cognition at the beginning of the study. They found that 47.4% of the patients progressed to what’s called mild cognitive impairment after six years. MCI is a loss of some thinking, memory, language and judgment capacity.

The real attention getter in this study is that every participant who was diagnosed with MCI during the study progressed to dementia within five years. Hope is what drives us in our struggle with PD. But we can’t let that necessary hope blind us to the reality of significant cognitive dangers down the road.

DEATH AND DYING

I came across a provocative essay that appeared in the New York Review of Books this year. Marcia Angell, the former executive editor of the New England Journal of Medicine, wrote it. It was a long review of a moving book that I have read but not commented on in this blog.

When I read the book, it sparked my interest in the palliative care movement. The reason was Gawande powerfully documents through individual case studies how very often medicine ill serves patients at the end of life. Where comfort measures are called for, intense, costly, ultimately futile rescue efforts are often inflicted on patients who would prefer prefer otherwise. Both the book and the essay are worth your attention. Book details:
Being Mortal: Medicine and What Matters in the End
by Atul Gawande
Metropolitan, 282 pp., $26.00

NICOTINE PD PARADOX

Nicotine occupies a strange role in Parkinson’s. My interest as a cigar smoker is large in this issue. For some unknown reason nicotine appears to protect against PD onset and might even slow the progress of the disease. The prospect that a known carcinogen might just be helpful in PD it is almost laughable. The review article on the subject is provocative.

BOXING UPDATE

I’m entering my third week of the exercise program Rock Steady Boxing, which I have described an earlier blog post. I continue to be very impressed with the able physical therapists and the results I am experiencing.
Over the last two weeks I’ve experienced only one PD “down” day. You know, those blah days when it feels like you have the flu. Before the boxing program, I was experiencing those bad days about one day in five. Rock steady is available only in Largo in the Bay Area at present. That makes for a long Drive for Hillsborough PD patients, especially in rush hour. Program Director Tara Schwartz tells me she hopes to have a second program located either in or much closer to Hillsborough County by the end of 2016. That’s very good news indeed.

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.
*******************************************************************************************(

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.

Parkinson's Disease

Upgrading PD Patient Care

I have previously written about plans for a Denver meeting of neurological experts and specialists to discuss Parkinson’s disease and palliative care. It occurred Oct. 3-4 sponsored and funded by the Parkinson’s Disease Foundation. I was privileged to take part as a patient presenter of the plan I outlined in my Sept. 26 post.

You will recall palliative care focuses on providing maximum comfort to patients. Kirk Hall, my co-author, and I prefer to call it the Life Enhancement plan for Parkies at all stages of their disease. (See below for Kirk’s fuller explanation of palliative care.)

I was one of several patients who told our stories about living with Parkinson’s disease in its various phases of progression. The stories were enormously powerful and the feedback from the professionals wtion.as supportive and enthusiastic. Our narratives ranged from the shock at diagnosis to how alone and confused we felt after learning that we had a progressive and incurable neurological disease—a disease that affects not only the neuro-muscular system but many other functions such as digestive, smell, sleep and thinking (cognition).

My first impression of the experts in the hotel meeting room was how young they looked. Here we were, a group of 60-plus-year-old patients and caregivers, talking to aces who could be our grandchildren. And these were awfully smart and dedicated young people whom I quickly came to respect for their dedication and knowledge.

The primary difference between we patients and caregivers and the various neurological pros was our focus on qualitative actions versus their need to validate results by quantitative measures.

The patients favored action steps, such as one-stop shop for authoritative information for patients and caregivers.

By contrast our audience lived in a far more quantitative world that is required by their disciplines. Life experience truths were not sufficient for the work they needed to do in their world of high-powered measurement and proof.

It was clear to me and the other patients that an organized and efficient system of treatment utilizing the right professional at the right time in disease progress was a no-brainer to establish. The researchers, by contrast, even if they agreed with us, bore the burden of proving with bullet-proof data that the new system would produce better results for patients than the current system (or better, non-system).

Nonetheless at the conclusion of the two-day meeting, there was a remarkable accord about next steps in moving toward a new system of organized care.

To give you some examples, one of the tasks the group will undertake is “theoretical model and practical next steps for caregiver research and support.” A second was “an outcome measures working group including review paper summarizing state of evidence with recommendations.” On the qualitative side was a recommendation to publish in a neurological journal a letter suggesting what neurologists should be doing better for patients. One very ambitious recommendation was “categorizing, summarizing and critiquing what resources are currently available for patient education…”

There were other recommendations to create new committees and coordinating bodies to make permanent the palliative (“Life Enhancement”) movement with an ongoing series of caucuses and professional interest groups.

My colleague Kirk Hall describes an ongoing next step: “A new clinical research study titled ‘Does outpatient palliative care improve patient-centered outcomes in Parkinson’s disease?’ has begun at University of Colorado Hospital Anschutz Campus and is actively seeking interested individuals over the age of 40 that have been diagnosed with probable Parkinson’s disease and their care partners. Dr. Benzi Kluger is the principal investigator for the study, which is being funded by the Patient-Centered Outcomes Research Institute (PCORI) and will take place over a period of three years. There are two additional sites at the University of Alberta and the University of California San Francisco. Information regarding this study is available on the Fox Trial Finder site: https://foxtrialfinder.michaeljfox.org/trial/4202/.

“Many people are confused by the term palliative care. It is a treatment approach focused on improving quality of life by relieving suffering in the areas of physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues, and spiritual needs for PWPs, care partners, and families at all stages of PD. Hospice and palliative care are not the same thing. Hospice can be an extremely valuable end-stage service and is an under-utilized subset within the palliative care spectrum. This study plans to learn more about the effect of palliative care on patients with Parkinson’s Disease and their care partners.”

To summarize, through the leadership of Dr. Kluger, who organized the Denver conference, a very large ball in the treatment of Parkinson’s has begun rolling. There is no reason that parts of the larger three-site study can’t be implemented now in other cities.

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.

 

Uncategorized

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.