Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, Parkinson's Foundation, PDF, Research

The PD-Autoimmune Connection

Shuffling Editor note: I am intrigued by growing evidence that PD is an autoimmune disorder. This review article makes the point clearly. It appeared in Parkinson’s News Today by Magdalena Kegel.

“Parkinson’s disease may in part be driven by autoimmune processes, according to researchers who discovered that certain immune cells react to alpha-synuclein — a protein that accumulates in the brains of Parkinson’s patients.

“The findings, published in the journal Nature, raise the possibility that immunotherapy could be used to slow down disease processes in people with Parkinson’s. An immune reaction to alpha-synuclein could potentially also be used to identify people at risk of developing the disease.

“‘The idea that a malfunctioning immune system contributes to Parkinson’s dates back almost 100 years,” David Sulzer, PhD, a professor of neurobiology at Columbia University Medical Center and one of the study’s lead authors, said in a press release.

“’But until now, no one has been able to connect the dots. Our findings show that two fragments of alpha-synuclein, a protein that accumulates in the brain cells of people with Parkinson’s, can activate the T-cells involved in autoimmune attacks,” he said.

“The study, “T cells from patients with Parkinson’s disease recognize α-synuclein peptides,” suggested that immune T-cells react to neurons in which large amounts of abnormal alpha-synuclein has piled up.

“Together with colleagues at the La Jolla Institute for Allergy and Immunology, the research team took blood samples from 67 patients with Parkinson’s disease and 36 healthy controls of the same age and mixed them with fragments of alpha-synuclein and other neuronal proteins.

“The idea was to observe how immune cells present in the blood would react to the protein parts. While immune cells from healthy people did not react much to the presence of the nerve cell components, T-cells in patients’ blood reacted strongly to alpha-synuclein. This indicated that they had been primed to recognize the protein.

“The response could explain why genetic studies of Parkinson’s disease have repeatedly flagged a genetic region, which is responsible for the immune system’s ability to tell the body’s own structures from foreign ones found on microbes and tumors.

“Sulzer’s lab had shown three years ago that dopamine neurons have proteins on their surfaces that act as flags that aid the immune system in recognizing foreign structures. They suggested in 2014 that T-cells had the potential to attack these neurons in an autoimmune process.

“The new study provided evidence of how this might happen. According to Sulzer, the T-cells might start reacting to neurons when they start accumulating abnormal alpha-synuclein, mistakenly thinking they are a foreign structure.

“In most cases of Parkinson’s, dopamine neurons become filled with structures called Lewy bodies, which are primarily composed of a misfolded form of alpha-synuclein,” Sulzer said.

“Young, healthy cells break down and recycle old or damaged proteins,” he said. “But that recycling process declines with age and with certain diseases, including Parkinson’s. If abnormal alpha-synuclein begins to accumulate, and the immune system hasn’t seen it before, the protein could be mistaken as a pathogen that needs to be attacked.”

“But so far, researchers do not know if the immune response is what triggers Parkinson’s in the first place, or if it drives disease progression once the disease has been triggered by other factors.

“”These findings, however, could provide a much-needed diagnostic test for Parkinson’s disease, and could help us to identify individuals at risk or in the early stages of the disease,” said study co-leader Alessandro Sette, a professor in the Center for Infectious Disease at La Jolla.'”

 

 

Parkinson's Disease, Research, Uncategorized

How my post won, but didn’t, a $2,500 prize

January 12 was a strenuous day. After helping facilitate Module 4 of PD SELF —the groundbreaking personal leadership program of the Parkinson’s Foundation, PF for short—I was wasted and ready for a Sam Adams Pumpkin beer…..or two.

Come 2:00 PM, when I finally sat with my Sam to check email,textito-2500-award what did my tired eyes spy but a message from PF.

Here’s an edited version of that eye-popping email: “I have good news for you —remember when you helped us by writing a post (for a contest)? It turns out PF won the most liked post of the year (yours) award, which means we get the sum of $2,500.”

I asked myself who is the “we” getting the $2,500? Posing that question publicly, however, would be very bad form.

I imagine the whispers at HQ.  “He wants what? To take money for himself that we would use for research to find a cure for PD? Come on man! Get real.”

Brain Lightning……….Write a tongue-in-cheek email to new PF leader John Lear implicitly asking the money question. Have it coming to Lear from two top aides.

Pure genius………. Worthy of my chosen nom-de-plume, “The Wily Old Editor.” So it was—a practical joker’s delight.

“Dear John:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa whom we told you about? The guy who blogs at www.shufflingeditor.com.

“Turns out the dude actually can write. He won us a $2,500 prize…… for  contributing to a commercial blog about Moving Day. It was the most liked post of the year. Since the money is ours, consider sending him an “Atta boy” note as his consolation prize.

‘He blusters but is a sucker for sentimentality.”

The  connoisseurs’ email was sent Jan. 12.

To date no response. Nada.

Swing-and-a-miss, it would seem.

Anyway, here’s the version of the $2,500 column that appeared in the late Tampa Tribune and on this blog in April 2016.


MY PARKINSON’S CRASH COURSE

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

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

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

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

  • It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  • Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
  • A Parkinson’s specialist can help.Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  • Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling} can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  • We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery; it takes effort on your part to assemble that team.
  • All support groups not created equal. Support groups have different constituencies (young/elderly onset—newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
  • There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended tai chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
  • We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

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

 

 

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

More on living well with PD

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

Parkinson's Disease, Parkinson's exercise, Research, USF

South Tampa YMCA on the PD Move and a Fine Haus(er) Party

South Tampa Y Explores PD Exercise Expansion

The South Tampa Family YMCA is sprinting towards creation of a second exercise program for people with Parkinson’s. The Y’s strong start with its cycling program has encouraged key leaders to explore more exercise programs aimed at PD.

The South Tampa Y’s stationary cycling program has exploded from 6 to 20 members in just over two months. Participant reviews are very strong and many expressed interest in additional new programs, such as the Rock Steady Boxing program in Largo. Current Hillsborough exercise programs aimed at PWP include yoga, tai chi, the Jewish Community Center’s new program and LSVT Big.

Y leaders Melissa Brockman and Nancy Belli have become enthusiasts for strenuous exercise programs for Parkies. They are urging other local YMCAs to start cycling programs. They are also talking with physical therapist Jason Kimber about the vigorous exercise program for PD that he designed. Kimber, who has relocated from South Florida to Tampa, wrote a guest blog on Shufflingeditor on February 2. Kimber has developed a program that includes elements similar to Rock Steady. Kimber’s program includes rigorous, whole body movement exercise that utilizes components of boxing, yoga, balance and strength training, as well as stretching. “Those take your body through atypical movement patterns that can help to retrain the brain,” he wrote.

Y leaders are looking for innovative program ideas. Kimber’s certainly appears to qualify. An added plus is the Y can bring it to market faster than a Rock Steady program.

USF’s Haus(er) Party

Dr. Robert Hauser and his staff at the USF Health Byrd Parkinson’s disease and movement disorders center threw one fine house party last Saturday for more than 200 persons with an interest in PD.

The day’s activities included presentations on DBS surgery, speech and language therapy, legal issues, and a physical therapy program known as LST Big.

The speakers covered ground familiar to readers of this blog. But I was intrigued with comments from Dr. Fernando Vale, a USF neurosurgeon. Among them:

• Still active USF surgeon Don Smith did the first DBS operation in the U.S. in 1993.
• 150,000 implants have been done since then.
• The 7-10 year surgery window. After an initial diagnosis it s deemed the sweet spot for DBS.
• Vale said the surgery “makes your life better but not ideal.”
• The surgery results in a reduction and the need for medications such as carbidopa-levodopa.
• There is “only a small chance that early surgery will delay progression of the disease.”
• Vail cities the next surgical step being about how to “repair damage and regenerate neurons.”

The lawyer who spoke, Jack M Rosenkranz was especially impressive about the legal safeguards Parkies should put in place. If you haven’t taken care of the estate planning guardianship and other issues, Rosenkranz would be a good one to consult.

Hauser closed the show with a wide-ranging review of current research efforts, his forte. As always, he urged his audience to volunteer in research projects.

While at heart a researcher, Hauser has been an important and public proponent of patient care initiatives and reforms.

Hauser was an early proponent and financial supporter of the Rock Steady Boxing program. He teamed with the Jewish Community center here to start their new exercise and caregiver program. He has supported my idea of a local helpline for Parkies.

Parkinson's Disease, Parkinson's exercise, Research

Research News About Boxing Therapy

News that Rock Steady Boxing works for PD patients

The Miami Herald wrote a feature story about a local Rock Steady Boxing program. Deep in it was real news about research confirming the program’s effectiveness. Here is the nugget:

“Stephanie Combs-Miller, associate professor at the University of Indianapolis’ Krannert School of Physical Therapy, recently conducted the first major study on the effects of boxing therapy on Parkinson’s. Over a two-year period, 88 volunteers, half of whom participated in Rock Steady Boxing, were tracked every six months using physical therapy assessments.
“’We found that people who exercise in a boxing program demonstrated a higher level of function,’’ she said in a release about a lecture she was giving on the subject.
“The theory is that the combination of activities connected to the boxing helps develop strength, agility, endurance and flexibility. Over time, the participants who did the program demonstrated significantly better balance and walking function, compared with Parkinson’s patients who chose other forms of exercise.”

Combs-Miller’s study has not yet been published in a scientific journal. There has been widespread scuttlebutt that the results were positive,

On a personal note, I continue the training three times a week and have improved balance, agility and coordination. My off days are way down. An informal poll of my exercise mates confirmed my experience was also theirs.

A Beautiful You Tube video on participatory medicine

Don’t miss this video on the benefits of a collaborative relationship between doctor and PD patient. It goes to the heart of the argument for a revolution in the continuity of Parkinson’s care.

A Deserved knock on PD treatment nostrums

My friend and fellow retired editor Doug Clifton has written a lovely essay on the dangers of nostrum remedies for PD. Check it out.

PDF Help Line

The Parkinson Disease Foundation offers a reminder about its help line. Someday I hope to have a local version for Tampa Bay.

Do you have questions about Parkinson’s? PDF’s HelpLine team is ready to be a resource for you, your loved ones and patients. Our information specialists
are available Monday through Friday, 9:00 AM to 5:00 PM ET at (800) 457-6676 or info@pdf.org. They can answer questions about PD, point you toward local doctors, support groups and resources, and send free educational materials.

.

Palliative Care, Parkinson's Disease, Parkinson's exercise, Research

TAMPA SEMINAR, BOXING UPDATE, RESEARCH MORSELS

FOX SEMINAR ON PD IN TAMPA FEB. 6

Partners in Parkinson’s is coming to Tampa on Saturday, February 6. The event features a full day of panel discussions, breakout sessions and a resource fair to connect you with clinicians, support and exercise groups and other resources right in the Tampa community.

WHERE:
Hilton Tampa Downtown
211 North Tampa Street
Tampa FL 833602

WHEN:
Saturday, February 6, 2016
8:00 a.m. – 3:30 p.m.

Partners in Parkinson’s events cover topics related to all stages of Parkinson’s disease. Whether you’re newly diagnosed or have been living with Parkinson’s for years, you will learn:
• How Parkinson’s impacts everyone differently, and how to tailor a care team that meets your specific needs
• What to know, ask and expect at an appointment with a movement disorder specialist
• Updates on the most promising Parkinson’s disease research
• How to live well with PD by incorporating diet and exercise into your lifestyle
• The benefits of staying connected to loved ones and to the community
Registration opens at 8 a.m. and a continental breakfast and lunch will be provided.

Visit http://partnersinparkinsons.org to learn more or RSVP today.

MY WEEK FOUR REPORT ON ROCK STEADY BOXING
After four weeks of Rock Steady Boxing experience, I am an even bigger fan. Working out 3x a week has improved my balance markedly and decreased blah days. My training mates offer the same positive assessment Do it if you can. See my earlier post for details.

AARP PRESIDENT BOOSTS PALLIATIVE CARE

Palliative Care, often the missing link in PD management gets a boost from the heavy-hitting AARP.

http://www.aarp.org/politics-society/advocacy/info-2015/palliative-care-living-with-dignity-english.html


IS GOLDEN OLDY ASPIRIN GOOD FOR PD?

Have a look at http://www.pdf.org/en/science_news/release/pr_1450710960

UPDATE ON NILOTINIB

My support group friend Doug Dear passes along these intriguing reports on the anti-cancer drug Nilotinib and its possibilitise for PD treatment:

http://www.npr.org/sections/health-shots/2015/10/17/448323916/can-a-cancer-drug-reverse-parkinsons-disease-and-dementia

https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial

http://movementdisorders.ufhealth.org/2015/10/22/nilotinib-tasigna-for-parkinsons-questions-and-answers/

Palliative Care, Parkinson's Disease, Parkinson's exercise, Research, Uncategorized

TRAIN YOUR BRAIN WITH COMPUTER GAMES

The scientific journal Neurology has editorially endorsed computerized training as a way to slow or prevent cognitive decline in Parkinson’s. The endorsement is somewhat tentative but definitely a boost for Brain Hq-like computer training: “…… cognitive training is modestly effective for improving cognitive function in people with PD.” The editorial concludes: “Given that PD is more than just a movement disorder, cognitive training may be an important option for improving cognitive function in patients with PD.” USF’s School of Aging Studies has a computerized cognitive study underway of PD and is seeking volunteers. The principal investigator is Dr. Jerri Edwards. For more information call USF’s Cognitive Aging Lab at 813-974-6703.

Tampa JCC Wellness Program Launches Jan. 23

The Shuffling Editor has gotten more information on the Tampa Jewish Community Center/USF Health wellness program for Parkinson’s. Exercise classes begin Jan. 26, run for 12 weeks and cost $120.

Tuesdays from 11:30 AM to 12:30 PM is Nia, a new term to me. Wikipedia describes Nia thusly: “Nia dance cardio fitness classes are taught by instructors licensed in the Nia Technique. Each class includes mindful movement guidance and somatic education; class cycles include warm-up, sustained non-impact aerobic conditioning, strength training, cool down and stretching. Nia Fitness classes are taught to music, including pop, electronica, jazz, Latin, New Age, Indian and hip hop. They employ 52 basic movements and techniques that draw on a combination of Jazz, Modern and Duncan Dance styles, Tai Chi, TaeKwonDo and Aikido; and the body mind healing arts of Feldenkrais Method, Alexander Technique and Yoga.”
Thursdays, same hours is chair-based strengthening.
Fridays from 1:30 PM to 2:3 0 PM is Tai Chi.
The Caregiver Support Group begins Jan. 29. It is free and runs for12 weeks on Fridays from 1:30 PM to 2:30 PM. A community event is scheduled Jan. 23, 7-9 PM. The topic is Keep Moving Tampa! For background and contact information see my earlier post: https://shufflingeditor.wordpress.com/2015/10/01/tampa-gets-grant-for-parkinson-wellness-program/

Rock Steady Boxing and Me

I am into the second week ( 3x times a week) of this slightly misnamed program. Of a 90 minute training session, no more than 30 minutes is devoted to punching hanging and big bags. The remaining 60 minutes is spent in floor, strengthening exercises, weight training and Balance exercises such as skipping, sidestepping, butt kicks, monster steps and backwards walking.

Two early observations of the program: I had not realized how degraded my hand-eye coordination had become. That sure explains why my golf swing left me. Second observation. I end sessions more energized than tired. Whether coincidence or not, I have not had a “bad” PD day since starting the program. Bad days are when you feel like you have the flu. I am accustomed to having them one day in five.

Huffington Post had a recent piece on the program: http://www.huffingtonpost.com/jonathan-j-doll-phd/rock-steady-boxing-for-people-with-parkinsons-symptoms—-a-national-perspective_b_8646972.html
The Largo program has no plans for a move into Hillsborough. But I have talked to a person who is seeking to put a franchise location in Channelside.

AN INVALUABLE RESOURCE GUIDE FOR THE NEWLY DIAGNOSED

My friend Kirk Hall has updated his information guide for those new to PD. It is pure gold and is a byproduct of the national research project on palliative care in PD. http://www.shakypawsgrampa.com/index.php/new-blog/entry/parkinson-s-education-resources-1-years-since-diagnosis

SPEAKING OF PALLIATIVE CARE

None of us likes to think our journey will end with dementia. In upwards of 50% of PD cases it does. The financial impact of dementia can be devastating. Money magazine has a helpful review of available options at Money.com/dementia.