Shake, Rattle and Roll

GLOBAL COMMUNITY CONFERENCE ON PARKINSON'S DISEASE

"BEYOND THE LIMITS”

WHEN:   Sunday, March 2 - Tuesday, March 4, 2014

WHERE: Keystone Lodge & Conference Center in Keystone, Colorado

CONFERENCE DETAILS
The conference, brought to you by the Parkinson Association of the Rockies, will focus on research, care and support systems through plenary sessions, workshops and panel discussions. Highlights will include: the Michael J. Fox Foundation Research Roundtable, NASA Astronaut Rich Clifford and invited national and international speakers recognized for their expertise in the PD community, including selected speakers from Keystone Symposia's concurrent scientific meetings on Parkinson's and Alzheimer's Disease.

WHO SHOULD ATTEND
The conference is a rare opportunity for those researchers, scientists and clinicians serving the Parkinson community, as well as those individuals living with the disease and their care partners to interact with and learn from each other.

Conference Fee: $275/Participant

Conference Fee Includes:
Entry to All Sessions
Cocktail Receptions (Sunday & Monday)
Continental Breakfast (Monday & Tuesday)
Coffee Breaks (Monday & Tuesday)
Lunch (Monday & Tuesday)

Conference Fee does NOT include lodging or travel accommodations. See more at: http://parkinsonrockies.kintera.org/faf/help/helpEventInfo.asp?ievent=1089631&lis=1&kntae1089631=B3CED3DF00B94B14B183374959F9CE94#sthash.fY8Eedwz.dpuf

 

CONTACT FOR MORE INFO
(303) 830-1839 | [email protected] - See more at: http://parkinsonrockies.kintera.org/faf/home/default.asp?ievent=1089631

 

Speakers and Presenters at Global Community Conference on Parkinson’s Disease

Stanley Fahn, MD, of Columbia University, is literally one of the founding fathers of this profession. He founded the Movement Disorder Society and edited their journal for over a decade. He has mentored and educated many of the brightest minds in the field of Parkinson's disease and has been involved in literally every large study for Parkinson's disease over past 40 years.
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Joseph Jankovic, MD., at Baylor, did his fellowship training with Dr. Fahn in the early 70s. He has been involved in 100s of clinical trials for Parkinson's disease over the past 40 years and has authored over 800 articles.
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Neuroscientist Dennis Selkoe of Harvard University has founded and directs 2 labs focused on the study of neurodegenerative diseases. His team was instrumental in identifying the role of beta amyloid plaques in the progression of Alzheimer's disease.
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Although Patrick Lewis, a research fellow for Parkinson's UK, is still early in his career, he has already done very interesting research on genetic mutations of the Park8 gene, LRRK2, currently the most commonly identified genetic cause of Parkinson's disease.
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Caroline Tanner, MD is the Director of Clinical Research of the Parkinson's Institute in Sunnyvale, California. She has done groundbreaking research on the link between pesticides use and Parkinson's disease. Interestingly, the Parkinson’s Institute was founded by another brilliant neurologist, William Langston.  Dr Langston discovered the link between MTPT and Parkinson's disease, a chemical that allowed researchers to induce symptoms of Parkinson's disease, leading to many groundbreaking research breakthroughs.
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German researcher, Thomas Gasser MD is the director of the department of neurodegenerative diseases at the University of Tubingen. He has done extensive research on the genetic causes of Parkinson's disease with over 200 articles in peer-reviewed journals. He's also co-director of the Parkinson's Genome Network
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Becky Farley, PT PhD is the founder of Parkinson's Wellness Recovery (PWR!) a high intensity, interdisciplinary approach to treating Parkinson's disease. Many of you may know Dr. Farley from her work developing the LSVT BIG program in the early 2000s. The program, Parkinson's Wellness Recovery (PWR!) is a more dynamic and flexible expansion of many of those concepts, incorporating speech, voice and cognitive components as well.
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Deborah Hall, MD of Rush University of Chicago was initially at the University of Colorado movement disorders program. She has been involved in research ranging from genetic elements of the disease to the benefits of exercise for Parkinson's disease (including some of the recent research by Margaret Schenkman at CU Denver).
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Helen and James Whitworth are the founders of the Lewy Bodies Dementia Association (LBDA) and authors of a very excellent book, "A Caregivers Guide to Lewy Body Dementia". They are a fabulous resource of information to help care partners helping their loved ones cope with many different elements of the disease.
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Andrew Singleton of the NIH, has developed a large body of research on the genetic causes of Parkinson's disease, including some early seminal work on LRRK2 imitations.
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Haydeh Payami of the Wadsworth Center in New York, has also done interest in work regarding genetic and environmental factors involved in Parkinson's disease (including an interesting study on the protective effects of coffee). She also has a strong focus on healthy aging, particularly healthy brain aging.
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Ken Marek of Yale University, is cofounder of the Institute for Neurodegenerative Disorders is a nonprofit focused on evaluating and developing new treatments for Parkinson's disease as well as methods for early identification of Parkinson's disease.
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The closing speaker is Dave Iverson host of the radio program, "Forum” at KQED in San Francisco. He's also the writer, director/producer and correspondent for the PBS Frontline documentary "My Father, My Brother and Me" about his family’s struggle with Parkinson's disease. Since Dave’s diagnosis with Parkinson's disease in 2004, he has been a relentless advocate and public spokesperson for Parkinson's disease.
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As an additional treat, former NASA astronaut Rich Clifford, the only person to perform a spacewalk after receiving a diagnosis of Parkinson's disease, will be speaking about his experiences.  In addition, the conference will be premiering the one-hour documentary, "The Astronaut’s Secret” about Dr. Clifford's incredible story.

In addition, a number of local neurologists, neurosurgeons and scientists with expertise in Parkinson’s disease have been invited to speak.

Palliative Care and Neurology: Time for a paradigm shift

The Department of Neurology and

University of Colorado School of Medicine

Office of Continuing Medical Education

Presents: Ground Rounds

Palliative Care and Neurology:

Time for a paradigm shift

Benzi M. Kluger, MD, MS

Associate Professor of Neurology

Wednesday, September 4, 2013

5:00-6:00 PM

Hensel Phelps Auditorium WEST

Research Complex 1 North

At the completion of this learning activity, the attendee will be able to:

1) define what palliative care is and discuss how it is currently practiced;

2) recognize common palliative care issues which may be seen in neurology;

3) appropriately discuss and document advance care planning with neurology patients; and

4) refer appropriate patients for secondary and tertiary palliative care services.

The University of Colorado School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. The University of Colorado School of Medicine designates this live activity for a maximum of 1 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

On the Cutting Edge: A Parkinson’s Disease Discussion

 Presented by: Michael S. Okun, M.D.

Michael S. Okun, MD, will enter into a discussion based on his new book, Parkinson'sTreatment: 10 Secrets to a Happier Life.  The book addresses how to live well with Parkinson’s and all of the new and emerging therapies.

DATE: FRIDAY, SEPTEMBER 20, 2013

TIME: 11:00 AM – 12:30 PM

LOCATION:

Bethany Lutheran Church

Fellowship Hall

4500 E. Hampden Ave.

Englewood, Colorado

RSVP:   Parkinson Association of the Rockies at 303-830-1839 or email [email protected]

 

Michael S. Okun, MD, is currently Administrative Director and Co-director of the Center for Movement Disorders and Neurorestoration which is part of the Center for Translational Research in Neurodegenerative Diseases, the McKnight Brain Institute, and the University of Florida College of Medicine. Dr. Okun is dedicated to an interdisciplinary care concept.  Since 2006, he has served as the National Medical Director for the National Parkinson Foundation.

Dr. Okun has dedicated much of his career to the development of care centers for people with movement disorders. He has enjoyed a prolific research career and he has participated in pioneering studies exploring the cognitive, behavioral, and mood effects of deep brain stimulation  

Dr. Okun is considered a world’s authority on Parkinson’s disease both in the areas of clinical care and in research.  He has answered over 20,000 patient questions on the National Parkinson Foundation free forum, Ask the Doctor.

Michael S. Okun, MD, received his B.A. in History from Florida State University, and his M.D. from the University of Florida. He completed an internship and Neurology residency at the University of Florida. Following residency he was trained at Emory University in movement disorders.

Sponsored by the University of Colorado Anschutz Medical Campus School of Medicine

Parkinson’s and Resilience: Got It? Get It!

On Friday, August 23, 2013 from 12:30 pm to 1:00 pm (Eastern US time), Carol Walton and Dr. Jeffrey Wertheimer will be guests on Mary Spremulli’s Voice Aerobics Talking 2 You  on – Blog Talk Radio discussing the findings of a survey on Resilience and Parkinson’s disease,which was produced by The Parkinson Alliance.

The survey entitled, “Resilience in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation,” was performed to obtain a better understanding of the prevalence and the characteristics related to resilience in people with Parkinson’s. In addition, the results of the survey provide an opportunity to implement new approaches to enhance quality of life.

Program information:

Parkinson’s and Resilience: Got it? Get it!

Voice Aerobics Talking 2 You

Friday, August 23, 2013

12:30 pm to 1:00 pm (Eastern US time)

Guests: Carol Walton, CEO, The Parkinson Alliance

Jeffrey Wertheimer, Ph.D., Chief Research Consultant for The Parkinson
Alliance, and Head of Neuropsychology and Clinical Training Director at
Cedars-Sinai Medical Center, Los Angeles, CA

Host: Mary Spremulli, MA, CCC-SLP is a speech-language pathologist in private practice and a blogger.

The monthly radio programs focus on issues affecting people living with Parkinson’s and other neurogenic conditions. The listening audience is invited to call in with questions or comments.

To connect with this particular radio program, click on:

http://www.blogtalkradio.com/voice-aerobics/2013/08/23/parkinsons-and-resilience-got-it-get-it

To call in to speak to the host during this live program, call (347) 838-9137.

To learn more about Mary Spremulli, check out the following:

Mary Spremulli, MA, CCC-SLP

Voice Aerobics, LLC

www.voiceaerobicsdvd.com

Read more: http://voiceaerobicsdvd.blogspot.com/

http://about.me/mary.spremulli

 Listen at: http://www.blogtalkradio.com/voice-aerobics

Inspirational Daughter

By John Evans

 

I was diagnosed with Parkinson's in 2005. My wife and I selected the
University of Maryland Movement Disorder Center for my treatments. The Center has been wonderful, with an amazing staff of doctors and staff. I am now in mid-stage Parkinson's, with standard movement problems and medication off times. We were forced to close our home inspection business due to a fear of falling from a ladder or roof.

 

About five years ago, my daughter founded Promises for Parkinson's, a
non-profit fund raising organization.  Her intention was to raise awareness of the disease and to help fund research.  The University of Maryland has received $36,000 from Promises. Over 90% of donations are directed to the University's center.  Our 4th annual Hike the Park for Parkinson's is scheduled for September 7 at 8 AM. This has been an all volunteer effort, with my daughter devoting an incredible amount of personal time. 

 

Information is available at:  www.promisesforparkinsons.org. 

 

John Evans

Bel Air, Maryland

Contact:  [email protected] 

 

To learn more about John's story, check this out:  http://somvweb.som.umaryland.edu/absolutenm/templates/?a=2267&z=83

Make Every Step Count at the Parkinson's Unity Walk

FOR IMMEDIATE RELEASE

 Contacts:

Allison Riley, Fleishman-Hillard, 212-453-2113, [email protected]

Helaine Isaacs, The Parkinson Alliance, 800-579-8440, [email protected]

Thousands to Participate in 18^th Annual Parkinson’s Unity Walk
in Support of Parkinson’s Community

Participants make every step count at the largest grassroots fundraiser

for the Parkinson’s community

Kingston, N.J.— April 9, 2012—The 18^th Annual Parkinson’s Unity Walk (PUW) will be held on Saturday, April 28, 2012 in New York City’s Central Park, The Parkinson Alliance announced today.

The PUW is the largest grassroots awareness and fundraising event for Parkinson’s disease (PD) research in the United States. The event, which has grown from 200 participants in its inaugural year, is expected to unite more than 10,000 participants from across the globe.

"The annual Parkinson’s Unity Walk is a powerful way for families, friends, caregivers, research organizations and major Parkinson’s foundations to come together,” said Martin Tuchman, Chairman of The Parkinson Alliance. “For any individual or family affected by Parkinson’s disease who wants to feel the support, strength and compassion of a community – this Walk is where you should be.”

Currently, more than 1 million individuals in the U.S. are living with PD and 60,000 are newly diagnosed annually. Funding for research, for the cause and cure, as well as therapies that will improve the quality of life for those with PD, is critical. The PUW donates one hundred percent of all donations directly to research. As the “unity” in its name implies, the funds raised are distributed evenly among the seven leading Parkinson’s foundations in the country: American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation, and The Parkinson’s Institute and Clinical Center.

“The National Parkinson Foundation (NPF) is proud to participate in and support the 2012 Parkinson’s Unity Walk,” said Joyce Oberdorf, NPF President and CEO. “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research. It is like no other.”

In addition to being able to walk with thousands of members of the Parkinson’s community, participants are able to take full advantage of a myriad of available resources at the event, including information about clinical trials, educational material from leading Parkinson’s organizations and information on how to become an advocate for the Parkinson’s community. This day of community and education also provides individuals who might otherwise have limited access to experts in the field, a chance to speak directly with movement disorder specialists, neurosurgeons, physical therapists, occupational therapists and speech therapists.

Most importantly, whether PUW participants are individuals diagnosed with PD seeking encouragement, family and friends showing support, caregivers desiring to know more, or researchers working toward new therapies, the PUW serves as a source from which to draw strength and build a greater community of support.

“It is by motivating, collaborating, educating and raising awareness of Parkinson’s disease that we take important steps oward our goal of improving the quality of life of Parkinson’s patients while we ontinue to work toward a cure,” said Tuchman.

Attendees are also invited to visit the Abbott booth on Margot Zobel Way to leave their photo and inspirational message on the Messages of Hope™ Wall. For each message, Abbott, a leading global health care and medical research company, will donate $15, up to $15,000, to the PUW in support of research. Additionally, Abbott will invite walk participants to receive ongoing information about treatment and research through an opt-in text message campaign. For each individual who registers, Abbott will contribute an additional $1, up to $10,000, to the PUW.

Registration begins at 8:30 a.m. at the Bandshell at 72^nd Street in Central Park. The Kick-Off will start at 9:45 a.m., followed by a 1.4-mile, wheelchair-accessible walk through the Park.

To register or make a donation, go to www.unitywalk.org or call 866-789-9255.

About The Parkinson Alliance

The Kingston, NJ-based national non-profit is dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson’s disease, and is the umbrella organization for the Parkinson’s Unity Walk. The Parkinson’s Unity Walk is the largest grassroots fundraiser event for Parkinson’s disease in the country. The inaugural Walk in 1994 had 200 participants and raised $16,000 for research. In the 2011 Walk, close to 10,000 walkers raised more than 1.5 million for Parkinson’s research. From day one, 100% of donations have gone to research supported by the seven major U.S. Parkinson’s foundations.

 For more information and a complete list of grants supported by the Parkinson’s Unity Walk, visit www.unitywalk.org.

###

 

 

Cruising with Parkinson's

Press Release

Contact: Amanda Smith Phone: (941)870-4438

FOR IMMEDIATE RELEASE July 27, 2011

Past Cruiser Endorses

Parkinson Research Foundation (PRF)

Patient Educational Cruise Program;

Encourages Patients to Attend

Upcoming PRF Cruise in January 2012

SARASOTA, FLORIDA - PRF is hosting its fourth educational cruise from January 8 – 15, 2012. Cruisers will set sail out of Port Canaveral, Florida on Royal Caribbean’s Freedom of the Seas to embark on a seven-night Western Caribbean adventure.

The Parkinson Research Foundation (PRF) developed an educational cruise program to help Parkinson patients, care partners and their loved ones learn about Parkinson’s and connect with fellow patients from across the world. Each PRF cruise boasts a unique faculty of movement disorder specialists, giving cruisers unrivaled access to prominent experts in the Parkinson field.

After three successful patient cruises, PRF has earned a precious asset – the endorsement of a Wellsphere-certified Top Health Blogger, Kate Kelsall. Ms. Kelsall is celebrated throughout the PD community for her unapologetic candor when writing about Parkinson’s. Updated regularly, her blog provides an endless source of information about PD and a personal perspective on the disease.

She recently posted an entry on her blog debunking cruise concerns often cited by Parkinson’s patients. A past PRF cruiser, Ms. Kelsall will join PRF once again for the upcoming cruise in January 2012.

Ms. Kelsall wrote: “Cruises have now become an appealing vacation option for my husband and me. After cruising on two of the Parkinson Research Foundation’s educational cruises, my husband and I found the seminars and classes to be informative and practical, particularly Mary Spremulli's Voice Aerobics program with useful tips that can be implemented in everyday life.”

The January 2012 cruise program will have a “1950’s” theme, complete with sock hop dance parties and costume karaoke events. The educational program on board will include presentations by prominent Parkinson’s disease physicians and clinicians, including Dr. Juan Sanchez-Ramos, Mary Spremulli, Dr. Kathleen Clarence-Smith, Bill Guthrie, Eman Nakshabendi, Dr. Thomas Chase, etc.  Patients, care partners and loved ones can participate in support group meetings, exercise classes and wellness seminars. 

To read Kate Kelsall’s entire post about conquering cruise phobias and crusing with PRF, visit http://katekelsall.typepad.com/my_weblog/2011/07/conquering-cruise-phobias.html

For more information about PRF and the PRF Educational Cruise Program, contact Lynne Henry by phone at (941) 870-4438 or via email: [email protected] or log on to www.parkinsonresearchfoundation.org. 

About the Parkinson Research Foundation (PRF)

The Parkinson Research Foundation (PRF) is a nonprofit health organization providing Parkinson’s patients with access to research, education, information and advocacy. PRF distinguishes itself from other Parkinson organizations by focusing on education and awareness, not only for patients, but also for their families and caregivers. PRF explores a variety of issues affecting the care and treatment of Parkinson’s disease, with a goal of bringing new advances in treatment to the forefront, making this knowledge available through seminars and conferences. The money raised by PRF funds research, information programs, and advocacy/awareness efforts that will support the over one million people with Parkinson's disease in communities across America.

For more information, please visit PRF online at: www.parkinsonresearchfoundation.org

 

Conquering Cruise Phobias

When I was a non-cruiser, I never thought I would like cruising. I was fearful of being confined, cooped up, and claustrophobic. I was worried about getting seasick. I longed for an active vacation of riding bicycles and hiking mountains. I didn’t want to get fat eating meals round-the clock. I dreaded being around all those old people.

However, cruises have now become an appealing vacation option for my husband and me. After cruising on two of the Parkinson Research Foundation’s educational cruises, my husband and I found the seminars and classes to be informative and practical, particularly Mary Spremulli's Voice Aerobics program with useful tips that can be implemented in everyday life.

We hope to go on the next educational cruise sponsored by the Parkinson Research Foundation from January 8-15, 2012 (see below).

 

For details, check out info at: http://www.parkinsonresearchfoundation.org/cruise.aspx

Educational cruises are often ideal vacations for those with Parkinson’s and their families. Participants can be as busy or as leisurely as they choose. There is an activity for every member of the family. While the patients are attending educational seminars, their family members can enjoy the same or other educational seminars or choose from the many activities on the cruise.

Other non-cruise tours require travelers to constantly change hotel rooms as they travel.  On a cruise, it is not necessary for cruisers to schlep their luggage from place to place and pack and unpack until they depart.

Scooters can be rented by those who have difficulty getting around on foot.

Some cruise phobias and solutions I’ve discovered to conquer them include:

Phobia: The cabin is tiny. It’s true that most of the average cabins are smaller than most of the average hotel rooms. The cabin on our last cruise had a large bed in a tiny room. And I felt claustrophobic, like I was in a MRI machine. And there were no port holes with views of the ocean which resulted in feeling confined. It was necessary to synchronize our actions—one of us couldn’t open the closet door while the other was going in and out of the bathroom.

Solution: Pay for a larger cabin with a view. Handicapped accessible cabins (which are usually larger) are available for those in need of such accommodations.

Phobia: Many people are fearful of seasickness and afraid of spending the entire time hanging over the toilet being seasick. Cruise ships are usually scheduled during times of calm waters and warm seas. Because of the large size of the cruise ships, they are usually stable.

Solution: There are many over-the counter and prescription remedies for dealing with seasickness.

Phobia: Too much food and gaining weight

Solution: Choose sit-down dining instead of cafeteria-style meals to prevent over-eating. If possible, walk the stairs instead of taking the elevators and walk on the top deck at sunrise to wear off some of the calories from the frequent and heavy meals.

Phobia: Pre-assigned dining times and dining mates

Solution: If you dread the thought of sitting with the same table full of strangers night after night, before booking your cruise, talk to your travel agent about flexible dining and seating arrangements.

And my GREATEST FEAR is being surrounded by old people with Parkinson’s. It forces me to look at the realities of aging with Parkinson’s. It’s true that many cruisers are seniors, and a Parkinson’s cruise will tend to attract an older population. But right beneath those aging exteriors, you will find inspiring persons with amazing life experiences. And at age 61, I have become an inspiring senior living with Parkinson’s AND with amazing life experiences to share.

So we’re choosing an educational cruse as a fun way to learn as well as enjoy the fresh ocean air, watch glorious sunsets, and relax in the cool sea breezes with miles and miles of ocean as far as we can see. As for being around old people with Parkinson’s, these former strangers may become friends who both inspire and amaze us.

Happy Cruising!

Fear makes strangers of people who would be friends.          Shirley MacLaine

Changing Your Brain

By Sharon Kha

Copyright 2011

A thin slice of new moon hung in the chill of the Arizona morning. Some of the people lined up at the trailhead had canes or walkers, and most of them had shaky hands and took short, lurching steps.  A wisp of the aroma of frying bacon was in the air.  Breakfast at the Rancho de los Caballeros dude ranch in Arizona wouldn't be for another hour, but the group at the trailhead was too excited to eat.  They all had Parkinson's Disease or were married to someone who did, and they all wanted to change their brains.

Pat Bemis wasn't looking forward to the week ahead.  Frankly, she was saturated with the demands Parkinson's made on her and her husband for the past 22 years.  She wanted a manicure, a pedicure and a good book.

Becky Farley was everywhere at once; shedding energy like sparks from a comet. "Plant your feet wider, PWR! UP  and you'll be steadier," she'd say. "Good, good, that's better." Her arms swung in wide arcs as she walked. "Activate!" she said. "Exaggerate your movements!"

Gardner Bemis, Pat's husband, shuffled to his place in line, hunched over and moving slowly. He used to be a neonatologist until his tremor got too bad. Now he lives in Steamboat Springs, Colo.  He had read about research done in Japan where newborns with brain damage had trained other parts of their brain to take over some of the lost functions.  He had seen remarkable recoveries in newborns with his own eyes.

"With Parkinsons, the brain pathways are still there," he said. "We haven't had a stroke or an injury to the pathway-we just need more of a particular chemical. It seemed to me that retraining the brain to compensate for PD should be relatively easy."

Recent basic neuroscience research in animal models of PD (rodents and non-human primates) suggests that exercise can halt or reverse motor symptoms and "change the brain."  The exercise was shown to increase levels of dopamine if started early enough.  But, even in those animals that had already lost 50-60% of their dopamine cells to Parkinson disease and that had obvious gait and balance problems  (as is more like the human condition at time of diagnosis), the exercise helped the remaining neurons work more efficiently.  So the brain learned how to do more with less dopamine and they walked and balanced better!   For example, there were more dopamine receptors, increased amounts of dopamine were released and it stayed around longer in the place where it was needed, and noisy/inefficient circuits were partially restored (Vuckovic MG, Quanzheng L, Fisher B, Nacca A, Leahy RM, Walsh JP et al. Mov Disord 2010;25(16):2777).  Studies suggest the exercise may bathe the damaged neurons and circuits in the brain with nutrients, like growth factors, which makes them sprout new connections and survive for longer.  It appears that brain change and reorganization occurs primarily in those “activated” circuits!  Giving support for the old adage:  Use it or lose it! 

For Martin Buckley, a Colorado Attorney, the "runner's high" when your brain is bathed in endorphins was a familiar sensation.  He likes to push himself but he thought he's never be able to push himself to runner's high again.  He was wrong. By the end of the week he was walking on a treadmill sideways and backwards and the runner's high was back.

Bemis, Buckley and 26 other people with Parkinson's put their brains through a veritable boot camp of forced use exercise that generated plenty of endorphins during their week at the dude ranch.  They started with a Parkinson's Wellness Recovery (PWR!) walk every morning, attended daily PWR! MOVES™ and PWR! Circuit classes that target PD-specific symptoms and movement deficits, went to lectures, and learned to do Yoga, Tai Chi, and meditation to decrease stress and its negative effects.  About half way through the week, both Gardner and his wife noticed that his posture had improved significantly, and he wasn't shuffling any more.  "I had been telling him for years to stand up straight," Pat said. "But Becky taught him what he had to do so he could stand straight." “PWR! UP”

Gardner noticed that his colleagues were experiencing similar changes. Two 80-year-olds who arrived with walkers were walking without them when they left. One woman discarded her cane. Another man walked down the aisle backwards to get his certificate - just because he could.  Brain change was a fact.

NeuroFit NetWorks is a non-profit organization founded by Becky Farley, PhD, MS, PT., and this was their first weeklong PWR! Retreat. "My vision is to build a community that recognizes and implements exercise as a physiological tool to help protect, repair and optimize brain function," Becky said.

She has already implemented her vision in her hometown of Tucson, AZ, where she opened a PWR! GYM.  People with Parkinson's can come every day and do exercises that are specifically designed to address particular physical deficits that are common to Parkinson's disease and improve the quality of their lives. She believes that the forced use repetitive practice of whole body functional movements that are most difficult for people with PD – when performed with amplitude, vigor and mindfulness will restore lost function, balance, and mobility from muscles and circuits made weak from inactivity and nonuse, slow motor deterioration, and basically make people happier. She also believes that continuous access to exercise that begins at diagnosis may even slow disease progression.  

"This isn't like brain surgery or meds," Pat Bemis said. "I could see the changes incrementally day by day-not only physically but emotionally. It was a "can do" approach after all these years of being told it is a progressive disease.  I felt like I had been to Lourdes in Arizona-and I'm very skeptical about things like this. I'm a nurse."

Gardner Bemis agrees.  "Too many doctors think that we have a degenerative disease so they pat us on the back and send us on our way and say 'Come back in three months.'  Becky has found a way to look at specific symptoms and design a plan that trains the brain to compensate for those particular conditions."

As important as the change in fitness was the change in attitude.  One evening, Martin and Debbie Buckley joined the rest of the group on a hayride to the desert.  They ate barbeque and watched the space station come overhead in the incredibly dark desert skies.  "It was very emotional," Martin said.  "There was a change of mind set as the week went on and you found you were able to do things you didn't think you could do.  We bonded, and we left happier."

People in Colorado this summer will have two chances to try Dr. Farley’s ideas for themselves. Clinicians and health and fitness professionals can attend a workshop either July 21-22 or July 23-24 at the Swedish Medical Center in Denver to learn Becky's techniques and become PWR! Exercise Experts.  People with Parkinson's are invited to join the PARKINSON EXERCISE REVOLUTION by attending a lecture at the Colorado Community Church on July 20. Details for both events are available on the NeuroFit NetWorks (www.nfnw.org) or by calling NeuroFit NetWorks at 1-520-270-9990.
    
Oh yes…. Pat Bemis got her pedicure.

 

 

 

Challenge Yourself to Live Well, Even with Parkinson's

Living Well Challenge: A Victory Summit Panel Discussion Webinar on How to Live Well with Parkinson’s
June 15, 2011 – 1:00pm EST
Sponsored by the Davis Phinney Foundation

 • Featuring presentations and discussions with leading researchers and movement disorder specialists from around the country.

 • Covering topics like the latest in research and clinical trials, nutrition, exercise, how to communicate with your doctor and your family.

• And finally, giving you access to worksheets and tools to support you in your commitment to live well today.

Challenge yourself to live well today. Watch with a friend or loved one. Tell your support group and tune in together. Get the tools and information you need to live well today with Parkinson’s disease.

Register today by visiting www.davisphinneyfoundation.org and clicking on The Victory Summit page. Or call 1-877-274-7673.

More than 4,500 people living with Parkinson’s have been inspired and challenged to take action at The Victory Summit™ symposium in cities across the United States.

Now, it’s your turn.

Topics will include:

• The latest Parkinson’s Research and clinical trials
• Exercise
• Deep Brain Stimulation surgery
• Nutrition
• Your Parkinson’s Community: choosing your doctor and involving your family

Watch with your family, friends or your support group and use our downloadable discussion guide to start talking about how to live well today.

Take the Living Well Challenge today, and get the tools you need to improve your quality of life with Parkinson’s.

The Living Well Challenge webinar will be presented via live, interactive webcast that you can watch on your home computer. There is no charge for this event, but registration is required. REGISTER FOR THE LIVING WELL CHALLENGE

Schedule:

1:00 PM – 2:30 PM EST **NOTE ALL TIMES ARE EST

1:00 Welcome and Opening Remarks

What is the Living Well Challenge?

Introduction to the Panel:

- Monique Giroux, MDS, Medical Director, Northwest Parkinson’s Foundation

- Terry Ellis, PT, PhD, Boston University

- Davis Phinney, Founder, Davis Phinney Foundation

 1:15 CHALLENGE: Be Informed and Aware

The latest Parkinson’s research and treatment options

- The Panelists

- David Charles, MD, Vanderbilt University

- Holly Shill, MD, Banner Sun Health Research Institute

1:30 CHALLENGE: Be Active

The importance of exercise and it’s effect on Parkinson’s progression

- The Panelists

- Melanie Brandabur, MDS, Clinical Director, The Parkinson’s Institute

1:45 CHALLENGE: Be Healthy

The role of nutrition and Parkinson’s

- The Panelists

- Cathy Garvey, RD, Scripps Clinic for Integrative Medicine

 2:00 CHALLENGE: Be Present

Engaging with your family, friends and your Parkinson’s community

- The Panelists

- Melanie Brandabur, MDS, Clinical Director, The Parkinson’s Institute

 2:15 CHALLENGE: Be Connected

Staying involved and taking the Living Well Challenge

 2:30 Webinar ends – Take the CHALLENGE!

1. Download and print all CHALLENGE worksheets on living well

2. If you are in a group walk through your discussion guide to talk about what you just heard

3. Visit the Davis Phinney Foundation website for more information from the presenters and check back in 5 days to see if your questions have been answered by our panelists.

 

Have Fun Learning While Cruising

Join us for  

The Parkinson Research Foundation’s

Parkinson’s Educational Cruise

To the Western Caribbean

Saturday, February 26, 2011 to Thursday, March 3, 2011

For a 5 night unforgettable experience, book now as space is limited!

After the overwhelming success of our first two cruises, The Parkinson Research Foundation will be launching another Parkinson’s Educational Cruise that will leave Ft. Lauderdale, Florida on February 26th, 2011.  This cruise aboard Royal Caribbean cruise ship, Navigator of the Seas, is designed for Parkinson’s disease patients, care partners and their families, and will provide a series of seminars and lectures about this disease as well as the opportunity to share some of the most amazing views in the Western Caribbean.

“Parkinson’s disease patients are often isolated because of their condition.  We believe that this cruise will provide them with an opportunity to both socialize with others who are affected by Parkinson's disease, but also to learn about how to manage the disease once they leave the ship,” suggested Larry Hoffheimer, Chairman of The Parkinson Research Foundation.

The program for the cruise will include presentations by prominent Parkinson’s disease physicians and clinicians, Dr. Juan Sanchez-Ramos, Mary Spremulli, Dr. Thom Chase,  etc.  Patients and their caregivers can also participate in support group meetings, exercise classes and wellness seminars.

Topics included will be:

Nutrition

Research

Medications

Therapy

Voice Aerobics

 Cruise Schedule

Day	Port	Arrive	Depart
SAT	FORT LAUDERDALE	-	5:00 PM
SUN	AT SEA	-	-
MON	GRAND CAYMEN	7:00 AM	5:00 PM
TUES	COZUMEL	10:00 AM	7:00 PM
WED	AT SEA	-	-
THURS	FORT LAUDERDALE	7:00 AM

The cruise price includes: 5-night cruise, port taxes, and all food on board ship, on-board activities and entertainment. Additional penalties apply to cancellations after final payment. Optional insurance is available upon request.

For further information and to register:

Call Teri at (888) 462-1434 or (941) 627-8795

or contact by email at: [email protected]

Castaway Cruises Inc., 1396 Ultramarine Lane, Punta Gorda, Florida 33983

  

 
Brian Ajhar, Copyright 2010

 

The Role of Caregivers for Patients with Parkinson's Disease

Presentation by Lonnie Ali- Activist, philanthropist, mother, wife and caregiver of Muhammad Ali

Wednesday, October 27, 2010
 
11:30 AM - 12:30 PM Refreshments
 
12:30 PM - 2:00 PM
 
The Cable Center
Daniels Great Hall - Mezzanine
2000 Buchtel Blvd.
Denver, CO 80210

For questions or to RSVP, please contact:
Cristina Taormina- Parkinson Association of the Rockies-
303-830-1839 or [email protected]

Live Webcast on PD at No Cost on Saturday, October 16

If you can’t make it to Atlanta this weekend for the 2010 Southeastern Parkinson Disease Conference and Young Onset Parkinson Conference, the other option is attending the Live Webcast at no cost.

To register for the Webcast: http://shows.implex.tv/Qwikcast/Root/NationalParkinsonFoundation/4159/register.htm

LIVE Webcast – Saturday, October 16, 2010

In partnership, The Northwest Georgia Parkinson Disease Association, the National Parkinson Foundation, and the American Parkinson Disease Association are hosting this conference for families impacted by young onset Parkinson’s disease. This weekend-long event will offer programs for people of all ages who are living with Parkinson's, as well as an opportunity to network with peers from around the country. Being part of Saturday's keynote presentations will allow you to learn about tips for daily living, and ask advice from healthcare professionals experienced in working with people with Parkinson’s.

Approximate Running Time: 8 hours

---

Featured Speakers

	9:00 - 10:00 AM EST Future of Cell and Gene Therapies for Parkinson’s Disease Penelope J. Hallett, PhD Instructor in Psychiatry, Harvard Medical School Member, Center for Neuroregeneration Research, McLean Hospital
	10:30 - 11:30 AM EST Clinical Research: Someone's Got To Do It Stuart A. Factor, DO Professor of Neurology, Emory University Director, Movement Disorders Program
	1:00 - 2:00 PM EST Afraid It's All in Your Head: The Brain, Anxiety, and PD Paul Short, PhD Licensed Neuropsychologist Private Practice, Elkridge, MD
	2:15 - 3:15 PM EST Intimacy and Sexuality in Parkinson's Making the Impossible — Possible Gila Bronner, MPH, MSW Director & Founder, Sex Therapy Service, Sexual Medicine Center Sheba Medical Center, Israel
	3:30 - 4:30 PM EST Music, Motion, and Parkinson's Disease Matt Ford, PhD, PT Faculty, Department of Physical Therapy University of Alabama

 

Feedback on above conference from Paul Zeiger:

The National Parkinson Foundation has made their recent conference available on the web.  The talks are GREAT. Dr. Paul Short's presentation on PD and anxiety is a must for everyone with PD and their families. Start from http://www.parkinson.org/  and follow the link to the conference.

Dr. Short has also put up a website that emphasizes living well with PD for families (www.pdfso.org)

Slides related to his talk are under "Resources" on that site.

Happy listening,

Paul Zeiger

www.parkinsonsyoga.com

 

 

The Victory Summit Travels to the Western Slope to Grand Junction

 
 
I participated  in the first Victory Summit in Westminster, Colorado in October 2008. The enthusiasm and positive energy at the event were contagious. The leaders got the audience moving, dancing and exercising. No thoughts of “woe is me” could exist in such an uplifting environment. I did not hear words such as “victim” or “suffer.” The speakers were top-notch. I appreciated the opportunity of being on the DBS patient panel. I left feeling inspired and hopeful.

Kate Kelsall, Parkinson’s Patient, Denver, Colorado

 

The Victory Summit Travels to the Western Slope to Grand Junction

What: The Davis Phinney Foundation in partnership with the Parkinson Association of the Rockies will host an informational and inspirational Victory Summit™ to share the latest advances in science, exercise, and care and to inspire living well with Parkinson’s.

When:    Friday, October 15, 2010, from 9:30 a.m. to 2:00 p.m.

Where:   Two Rivers Convention Center, 159 Main St., Grand Junction, Colorado

Cost: There is no charge to attend.
 
The content of the Victory Summit includes:

v  Living Well with Parkinson’s

v  Parkinson’s research update

 

v  Exercise: “How to Stay Active for the Rest of your Life”

v  Benefits of yoga

v  Caregiver tools and guidance

v  Panel discussion on deep brain stimulation surgery

Victory Summit Speakers:

Melanie Brandabur, MD, MDS Clinical Director, Parkinson’s Institute, Sunnyvale, California

Lauren Schrock, MD, Co-Director of the Movement Disorders Program at the University of Utah, and the Director of the Surgical Movement Disorders Program

Heather Ene, Assistant Professor of Physical Medicine and Rehabilitation at the University of Colorado Denver.  

How to Register

Registration information for the Victory Summit is available online at

www.davisphinneyfoundation.org

 or by phone at 1-866-718-2996

Voice Aerobics: Fun Ways to Energize and Strengthen Your Voice

FROG IN YOUR THROAT? LOST YOUR VOICE? CAT GOT YOUR TONGUE?

DBS Voices of the Rockies

A Nonprofit 501(c)(3) Advocacy and Educational Organization Dedicated to

 guiding patients and their families through the dbs (deep brain stimulation) experience

Proudly Presents

voice Aerobics™

Reserve your seat now for this rare opportunity to participate in a workshop led by
Mary Spremulli, MA, CCC-SLP, the creator of Voice Aerobics™.

Ideal for newly diagnosed as well as advanced Parkinson’s patients, their families and caregivers as well as specialists who work with them, this interactive discipline focuses on exercises to improve and maintain speech. Come prepared to use your voice and have fun!

WHAT:   Parkinson's Disease: Impact On Voice, Speech And Swallowing

What You Need To Know And What You Need To Do

 

WHEN:   Saturday, October 30, 2010 from 1:00 to 3:00 p.m.

WHERE: Second Floor Conference Center, Spruce C Room in the

Swedish Medical Center, 501 East Hampden Avenue, Englewood, CO 80113

 

HOW:    Contact Kate Kelsall at [email protected] or 303-252-9796 to register or for further information

Co-sponsors of this event include the Colorado Neurological Institute,

Medtronic Neuroscience and the Davis Phinney Foundation

enter the main entrance on the south side of the hospital.

Wheelchairs will be available in the lobby. There is no valet service on Saturdays.

Free parking in the ramp across the street from the south entrance.

Space is limited.   Space is limited.   Space is limited.

This workshop is free and open to the public.

Donations to DBS Voices of the Rockies are greatly appreciated! 

Light snacks and beverages are provided.