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Greetings!
Upcoming Events
- May 9: Tremble Clefs Lakewood Begins
- May 15: Education PAR Excellence - The Heart and Soul of Ritual, Connection
- May 19: Parkinson's Clinical Research in Colorado
- June 3: 2012 Parkinson Association Vitality Walk
- June 7: Tremble Clefs, South Denver Begins
- June 9: The Doctor Is In, Grand Junction
- June 16: The Doctor Is In, Colorado Springs
PD In the News
Ask the Doc
Do you ever leave your doctor's office thinking, "Oh, I forgot to ask that question!"? Now you can ask the Parkinson Association and we'll get it answered for you! Submit your questions to Lindsay Vassar at (303) 830-1839 or LVassar@ParkinsonRockies.org.
Beginning in June we'll publish the answers via video on our website and YouTube. We will announce the beginning of the videos through our e-newsletter in late May. |
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Donate Today
Support the programs of
the Parkinson Association
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We would like to thank Teva Neuroscience for it's generous support towards the ParkinsonVoice and our bi-weekly e-news.
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Formerly Shake, Rattle and Stroll
On Sunday, June 3, 2012 the Parkinson Association of the Rockies will host the 10th annual Vitality Walk (Formerly Shake, Rattle and Stroll)! This year we are expanding the walk to include two sites: Wash Park in Denver and Lehigh Park in Erie. Two sites, 2,000 steps and one unforgettable experience!
Our goal is to draw more than 1,000 walkers to promote community awareness about Parkinson's disease and raise over $100,000 to support the services of the Parkinson Association of the Rockies. Participants will enjoy music, food and discover new products and services at the Resource Fair.
Walk the walk that connects communities and enhances lives. Walk the walk and let others know that we can do something about PD. Walk the Parkinson Association Vitality Walk.
Thank you to all those who have created teams and begun raising funds. We have heard from Gary Sobol, Boot Camp Warriors Team Captain that, "No team will have more people walking then us." If that's not a challenge to other Team Captains, I don't know what is!
Sunday, June 3, 2012
Wash Park, Denver - Walk Start inside park near Franklin and Mississippi
Lehigh Park, Erie - 751 Eichhorn Drive, Erie
8:00 am Registration Begins
9:00 am Walk Start
10:00 am Resource fair and entertainment (Denver only)
Registration $30/person. For more information or to register visit HERE!
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Parkinson's Clinical Research in Colorado
A Discussion of Cutting-Edge Research
and the Essential Role that Parkinson's Patients Play
The Parkinson's Disease Foundation, the Parkinson Association of the Rockies, the Colorado Neurological Institute and the University of Colorado Medical School invite you and your guests to join us for an educational forum on Parkinson's research and to recognize the contributions of Parkinson's clinical research participants.
Clinical trials and studies play a critical role in the development of new and better medicines. Yet, enrollment of patients is one of the top challenges clinical researchers face. Slow and/or low enrollment slows the research process and deters potential funders from investing in research. Across all diseases, 80 percent of clinical trials finish late due to difficulties enrolling participants and nearly one-third of trials fail to recruit a single subject and cannot ever begin. Only one in 10 people with PD takes part in a trial. We can do better.
Date & Time
Saturday, May 19, 2012 | 10:00 AM - 12:30 PM
Location
Bethany Lutheran Church | 4500 East Hampden Ave., Englewood, CO 80113
Located just east of Colorado Boulevard on Dahlia and Hampden in Cherry Hills Village. Please use north entrance. PLEASE NOTE: This is a different location than previous Saturday programs.
RSVP by Wednesday, May 16
Admission for this program is free, but registration is required. Register by calling or emailing Susan at the Parkinson Association of the Rockies at 303-830-1839 or SLanzer@ParkinsonRockies.org.
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Education PAR Excellence
The Heart and Soul of Ritual: Connection
There is much discussion and debate regarding the changing nature of ritual in the 21st century. Ritual may appear to be quite different today as compared to previous generations; however, the purpose of ritual is timeless - integration of the mind, body and spirit during times that defy explication. Simply put, ritual creates connections. Ritual is vital to facilitate the process of integrating losses into the fabric of our lives. Therefore, we must be appreciative of what constitutes ritual and acknowledge that the nature of ritual has changed and will continue to change as society changes. Please join us to discover the heart and soul of ritual - connection.
Date and Time 
Tuesday, May 15th
6:00 - 8:00pm
*Dinner is provided
Location
Bethany Lutheran Church | 4500 E. Hampden Ave., Englewood, CO 80113
RSVP
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Research Trials
Colorado Neurological Institute Motor Fluctuators: We are recruiting patients on Sinemet with motor fluctuations (e.g. wearing off of individual Sinemet doses) for this 12 week phase 3 double blind placebo controlled study of preladenant adjunctive therapy to hopefully ease motor fluctuations. Contact: Breanna Nickels (303) 357-5445
University of Colorado
COMIRB #11-0647
Title: Dystonia Coalition Project
Investigator: Brian Berman, MD
Overview: The purpose of this research study is to lean more about the causes of dystonia and how dystonia may progress over the years.
Eligibility: People at least 18 years old with a diagnosis of primary dystonia. No previous surgical treatment for dystonia.
Contact: Carol Hennessey, (720) 848-5334
For more information on research trials in your area visit the |
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Cari's Corner: Plan B for the Care Partner
Care partners, care givers, care takers all mean the same thing. You experience life together. In good times and challenging times. In sickness and in health. Throw in the part about chronic illness. When one of you is diagnosed with Parkinson's disease, you both live with it. Most care partners focus on the person with Parkinson's well-being before thinking of taking care of oneself. Generally, the care partner takes the person with Parkinson's (PWP) to various doctor appointments, run errands and maintain most of the house work. Read More
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Michael J. Fox Foundation Parntership
Parkinson Association of the Rockies joins global community of PD organizations as a Clinical Trial Recruitment Partner
Clinical trials are the final and crucial step in bringing new medicines to market. But today, 80 percent of trials fail to recruit enough volunteers. This slows research progress and deters funders from investing in Parkinson's research. In Parkinson's, it is estimated that only one in ten patients will ever participate in a clinical trial.
Parkinson Association of the Rockies has stepped up to do something about this. As a Clinical Trial Recruitment Community Partner, Parkinson Association of the Rockies joins organizations from around the world building awareness about the importance of trial participation. As a Community Partner, Parkinson Association of the Rockies will engage with Parkinson's patient, caregiver, researcher and physician communities globally to encourage information access and action steps that the community can take to get involved.
"At Parkinson Association of the Rockies, we are committed to doing everything we can to make a difference in millions of lives touched by Parkinson's disease," said Cheryl Siefert, Executive Director. "Becoming a Clinical Trial Recruitment Partner will allow us to collaborate with other key stakeholders around the world to spread the word about the importance of research participation and the availability of tools that can make it easier to get involved."
Despite the challenges, low levels of trial participation belie the Parkinson's community's significant interest in stepping up. In a 2005 Harris poll, over 80 percent of Parkinson's patients surveyed were at least somewhat likely to participate in a trial. As a Community Partner, Parkinson Association of the Rockies is committed to connecting willing patients with the trials that so desperately need them.
"While everyone may think that 'someone else' will participate in clinical trials, that 'someone else' is us. I want others to understand that, whether you have PD or not, you can be part of the solution too," says Robin Katsaros, a caregiver support group leader and clinical trial participant from Los Altos Hills, California, whose husband was diagnosed with Parkinson's in 2008.
The community of Clinical Trial Recruitment Partners was convened by The Michael J. Fox Foundation for Parkinson's Research. In addition to Parkinson Association of the Rockies, a host of other organizations have joined this important work. To learn more,
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Community Events
Estate Planning Awareness:
Helping those Living With Chronic Illness and Disability
Presented by the Michael J. Fox Foundation
It is estimated that over 120,000,000 Americans do not have up-to-date estate plans to protect themselves or their families in the event of sickness, accidents, or untimely death. www.RV4TheCause.org (www.ChronicIllnessPlanning.org) programs endeavor to educate those consumers facing the challenges of chronic illness or disability for whom planning is more challenging, as to how they and their caregivers can plan.
May 3 | 7:00 - 9:00 a.m.
Estate Planning Council Southeast Denver
Estate and Financial Planning for Chronic Illness and Disability.
Call: Arlene Barringer (303) 757-4342.
May 3 | 5:30 - 7:30 p.m.
Women's Estate Planning Council
Estate and Financial Planning for Chronic Illness.
Call: Nora Roth (303) 864-7226.
May 4 | 12:00 - 2:00 p.m.
AAA-CPA
Income Tax Planning for Clients Living with Chronic Illness.
Call: Kimmy Livingston (888) ATTY-CPA.
Presentation by Martin M. Shenkman, CPA, MBA, PFS, AEP, JD With www.RV4TheCause.org and www.ChronicIllnessPlanning.org.
Pedaling for Parkinson's
This is the Cleveland Clinic program that Dr. Jay Alberts developed. The original study is called the "Forced Exercise" program. The way it works is you set up a tandem bicycle indoors on a bike trainer. A healthy captain/the rider in the front seat, maintains a cadence of between 80 - 90 rpms. A rider with PD pedals on the rear seat of the tandem and together they both maintain the target cadence. The front rider is in charge of maintaining the targeted cadence. With the tandem's timing chain, the rear rider must maintain the same pace as the front rider. Each spin is for a period of an hour, three times a week for 8 weeks. This has reduced PD symptoms by 35%. This is HUGE!
We are looking for riders with PD who are healthy and want to add a new proven exercise program to their work outs. The goals of the PD rider are to gradually work up to the target cadence between 80-90 rpms and maintain that fitness level. The Cleveland Clinic internet based i Comet (Cognitive Motor Evaluation and Testing) program is used to track the individual rider's progress thru a simple reaction based program
The goal is to have the PD riders move up from the tandem to a spin cycle. At that point the rider can spin where ever there is a spin cycle. Thus becoming independent and can exercise on their own or spin with the group.
We are looking for front seat volunteer riders for the tandems and PD riders for the rear seat.
If interested or would like to learn more about this exercise program contact:
John Carlin - Colorado Coordinator
doublehaul3@comcast.net
(303) 475-1760
Location
8775 E. Orchard- ste. 821 Greenwood Village
(East of I 25 on the north side of Orchard)
Each PD rider needs
$120 for 24 sessions ($5 per session)
Heart Rate Monitor (HRM)
Towel and water bottle
Comfortable biking shorts and work out shirt
Exercise shoes, biking shoes or tennis shoes
For more information about the program visit www.pedalingforparkinsons.org.
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