Contents:
1. Walking Towards a Cure—Parkinson’s Parkinson Alliance, by Trina Stokes
2. Message from the Executive Director–A New Door Opens to Research
DBS-STN.com — Improving the Quality of Life in the DBS-STN Community - The Newsletter (insert within The Catalyst)
3. Where We Are, Where We Need to Go, Challenges We Face, By Margaret Tuchman
4. The DBS-STN Programmers Discussion Forum
5. The Future of Neuromodulation
6. DBS Programmers Forum, By Roberta Rubin, RN, CNOR, RNFA, California Neuroscience Institute
7. DBS-STN.org is Growing
8. Past Events
9. Upcoming Events
10. Updating our Mailing List
1. Walking Towards a Cure—Parkinson’s Parkinson Alliance, by Trina Stokes, Event Director
It’s more than a beautiful 2-mile Walk that takes place in New York’s Central Park one day a year. Participants of the Parkinson’s Parkinson Alliance (PUW) go all-out, all year long, to raise donations—no matter what it takes. Parkinson’s disease is dealt with daily for those affected and, for the PUW community, fundraising efforts to find the cause and cure to Parkinson’s are nonstop.
Many PUW participants care so much about the cause that they begin dedicating time and resources far in advance of the annual Walk. It’s becoming the norm for some Teams and Walkers to set new fundraising goals immediately following the conclusion of one Walk and then working throughout the year to reach their goals by the next Walk. The PUW community cares about giving back, and it wants to be certain that future generations do not have to deal with this devastating disease.
Jenn’s Movers and the Shakers, a team from Pennsylvania, have already hosted two events for the 2005 Walk and have at least two more planned. In the summer they held a bowling tournament where they charged a donation fee to bowl and accepted general donations from those who could not attend. And talk about creativity, they also hosted a Beef n’ Beer event at their local Hall and charged a general donation ticket price per person. So far they raised over $2,500!
Ron Hyland, a physical therapist from Toms River, New Jersey, directs an exercise class for people with Parkinson’s. In just under three months, he and 90 members of his class coordinated a Walk in September and raised $15,000. The Walk at the Shore for Parkinson’s is expected to become an annual event.
In November, Tamra Cantore of Team Cantore and the Weather Channel organized the first annual Countrified Rock for Research which featured Jeffrey Steele—one of todays’ hottest songwriter/entertainers in country music. Over 150 neighbors, friends, family members, and colleagues from the Weather Channel attended this Monday evening concert in Atlanta, Georgia and raised over $30,000 for the Walk.
The greatest news about these events and others that take place throughout the year is that 100% of all donations sent to the Parkinson Alliance go to Parkinson’s research.
Since 1994, families, friends, caregivers, and Parkinson’s foundations have gathered once a year to unify their collective goal of finding the cause and cure to Parkinson’s disease. Every year the Walk grows in attendance, attracting new participants and new Teams. This year, new teams, such as Team Butterfly and I have PD-No Offence to You Charlene, became involved with the Walk because they want to support their loved ones, have fun, and raise money for much-needed research. While at the Walk, informative Parkinson materials provided by the foundations and sponsors are available to everyone. Participants can talk to a neurologist, find out about new therapies and clinical trials, locate a support group, and learn how to be a Parkinson’s advocate—all in one day!
Tom Gorman of Team Gorman who writes a monthly article for the Parkinson Parkinson Alliance web site notes, “people with Parkinson’s, their friends and family see Central Park as a sanctuary, the calm ‘eye’ in their ‘hurricane’.”
The next Parkinson’s Parkinson Alliance is scheduled for Saturday, April 16, 2005. Rain or shine, over 6,000 people and almost 300 Parkinson Alliance Teams are planning to attend. They know Parkinson’s does not take a day off, and their sights are set on walking the two-mile Walk and raising awareness and donations for Parkinson’s research. For some, it will be a tough walk to finish. But however many steps are taken, the PUW community knows every step matters. Every step taken gets us that much closer to finding the cure to Parkinson’s. Come and join us on Saturday, April 16th, as we walk towards the cure.
For more information, call toll free 1-866-PUW-WALK (789-9255) or visit www.unitywalk.org.
Return to top
2. Message from the Executive Director: A New Door Opens to Research
As I was thinking about what to write about for this issue, the telephone rang. It was Joan Samuelson, President and Founder of Parkinson’s Action Network telling me she was just appointed a member of the Independent Citizens Oversight Committee for California’s Proposition 71, the California Stem Cell Research and Cures Initiative. This committee will govern California’s $3-billion embryonic stem cell research effort. My first thought: What an important step this is for the entire Parkinson’s community — it truly provides us with a “seat at the table” in this precedent setting legislation that has the potential to cure many diseases.
In 1997, Congress signed the Morris K. Udall Parkinson’s Disease Research Act into law. The Udall Act directed the National Institutes of Health (NIH) to expand and coordinate Parkinson’s research with the purpose of finding a cure or treatment.
Today, we have 12 Udall Centers around the country, including Harvard University Medical School and McLean Hospital, Duke University, Johns Hopkins University School of Medicine, and Columbia University — just to name a few (for a complete list, see the website at www.ninds.nih.gov). Annually, the Director of each Center formally presents their research and conclusions to the other Centers as well as the NIH staff. This meeting develops relationships and fosters collaborations and alliances among the various Centers. This year, the National Institute of Neurological Disorders and Stroke (NINDS) funded a Parkinson’s Disease Data Organizing Center to collect information from all Udall Centers, thus allowing for standardized data and resources to be shared widely within the Parkinson’s research community.
We just participated in the 6th Annual Udall Centers Meeting in Washington DC. This is my third year and I can safely say this was the best. The Directors are becoming a driving force for developing therapies. It seems every Center is collaborating with at least two other Centers — and even the definition of a Udall Center has expanded. The University of Pittsburgh includes Wake Forest and University of Austin in Texas as part of their Center. If I had room in this issue I could give you examples of at least 15 research collaborations among the Centers. In addition, 12 different NIH institutes and centers fund research on Parkinson’s as well as the Department of Defense and the Department of Veterans Affairs.
Twice a month the Executive Directors of the major Parkinson’s organizations participate in a conference call to discuss strategies and work together on issues of major importance to the entire Parkinson’s community; i.e. advocacy, research and clinical trials. We meet in person at least twice a year to review strategies.
The passing of the Udall Act planted the seeds, which helped the entire Parkinson’s community to grow together, work together, and unify our collective goal of curing Parkinson’s. Now, with the passing of California’s Proposition 71, and with Joan’s new role as a Committee member, the Parkinson’s community not only has a “seat at the table,” but a voice that is loud and strong. Like the passing of the Udall Bill before it, the passing of Proposition 71 opens an important new door to research that will take us closer to finding the cause and cure to Parkinson’s.
Carol Walton,
Executive Director
Return to top
DBS-STN.com — Improving the Quality of Life in the DBS-STN Community -
The Newsletter
3. Where We Are, Where We Need to Go, Challenges We Face,
By Margaret Tuchman
We achieved our goals for 2004 — Our website, DBS-STN.org has a significant presence on the Internet, WE MOVE launched the DBS-STN Programmers Discussion Forum, and we were welcomed into the homes of 108 post DBS-STN respondents who took part in our latest survey, “Focus 2, Depression and Quality of Life (QoL) for PD Patients Who Had DBS-STN.”
Carol Walton and I called each respondent, and we learned a great deal about post surgery depression and QoL. In addition to the answers to the individual survey questions, we found that patients and their caregivers were desperately seeking answers about how to manage their symptoms at their current post-DBS stage. It was reinforced that adjustments play a significant (50 – 70%) role in the quest for QoL. We found that the success of adjustments and therefore the ongoing daily life of patients was directly correlated with the skill of the programmer/adjuster. Programming can overcome incorrectly placed electrodes. In the right hands, it can find a marriage between choosing to speak intelligibly and walking— or falling, freezing, and having bradykinesia. Yes, I am saying that we can and should ask for the highest level of professionalism in all aspects of our treatment.
In our phone contacts, we found that most patients had obvious problems with speech. Many caregivers had to speak for the patient. Other complaints were balance and gait problems resulting in frequent falls. Although all respondents (except one ) were pleased with their decision to have DBS-STN, they intimated that there was a disconnect between expectation, understanding and reality as changes in symptoms emerged. Very few patients really understand that successful DBS-STN provides an additional treatment tool and is not a remedy by itself. PD condition is not static or unchanging; therefore, all the elements that make up a satisfactory QoL need to be constantly adjusted. PD is not a disease that offers the luxury of long range planning.
A Special Edition of the DBS-STN Newsletter that contains the full report analyzing the responses to the Focus 2 Survey is available (if you would like to receive the Special Edition, please contact us for a copy or visit our website).
Based on the success of the phone contacts, we are now focusing on three new goals for the coming year:
• Developing a list of questions which will be collected via telephone approximately every 12 weeks to feed our database with your most current symptoms, changes in medications, whether you feel the need for an adjustment, and other health, psychological, social issues affecting your QoL.
• Putting together a bi-annual topical questionnaire that will explore the issues affecting QoL. For example Focus 2 survey’s lead topic was Depression. Our analysis pointed out some interesting facts, most importantly that our population closely followed the data in research. Please refer to the Focus 2 Report for specifics. There are many topics that merit highlighting.
• Recognizing the yet unmet needs of the general PD community and more precisely of the DBS sector. Our goal is to provide this target group with information to assess their current QoL and suggest tools they can use to make improvements.
Our condition demands that everyone take part in improving our lot.
Return to top
4. The DBS-STN Programmers Discussion Forum
In November 2004, WE MOVE (www.wemove.org) announced the DBS-STN Programmers Discussion Forum at <www.mdvu.org/cgi-bin/ultimatebb.cgi. The WE MOVE DBS-STN Programmers Forum is for healthcare professionals ONLY. If you had DBS-STN surgery, we ask that you tell your doctor about this forum to share their experiences.
DBS-STN Programmers:
Do you have questions about DBS-STN programming? Have you made observations that you would like to share? Would you like to know how experienced programmers approach initial and follow-up programming, medication adjustment, and troubleshooting? There is no “cookie cutter” approach to DBS-STN programming, but sharing information among professionals can be a great help.
To accelerate the learning curve, WE MOVE invites programmers to the DBS-STN Programmers Discussion Forum at www.mdvu.org/cgi-bin/ultimatebb.cgi. The Forum is available 24/7 and enables novice programmers to post questions and receive responses from peers. Experienced programmers may benefit from the strategies for success from their peers. The DBS-STN Programmers Discussion Forum is part of the WE MOVE Parkinson’s Disease Educational Initiative and is funded by educational grants from Medtronic, Inc., The Parkinson Alliance, the Charles & Vivian Sukenik Philanthropic Foundation, and the Evan and Sandra Stern Foundation.
For the majority of those who had DBS-STN surgery, their quality of life has improved dramatically.
In 2002, the first DBS-STN survey was distributed to a group of PD patients who had DBS-STN surgery. This survey was designed to collect, analyze, and compare the individual circumstances leading up to, through, and after surgery. We found that the survey helped answer many questions and raised some others. The evaluation of the collective responses is the foundation for The First Report.
A number of large gaps were uncovered in the patients’ knowledge and understanding of many issues they and their families were struggling with—even as they were recuperating from the surgery. The Focus 1 Survey was sent to the respondents of the initial survey. It was an outgrowth of some of the questions that were raised and collected in The First Report. This survey compared the severity of many PD symptoms before and after surgery, as reported by forty-nine patients.
If you would like to receive a copy of The First Report or of the Focus 1 Report, please either visit our website at www.DBS-STN.org where you can download a PDF or contact our office at 1-800-579-8440.
Additionally, if you or someone you know had DBS-STN surgery at least six months ago, we’d like to hear from you. Please call our office toll free at 1-800-579-8440 to learn how you can participate in our new surveys.
Return to top
Return to top
6. DBS Programmers Forum
By Roberta Rubin, RN, CNOR, RNFA, California Neuroscience Institute
The Parkinson’s patient decides to have DBS surgery. Being an experienced and educated consumer, she does extensive research. Who has done the most implants? Which is the highest rated hospital? Do they have the newest technology? Will her insurance cover the procedure?
She identifies the surgeon and facility that meets all of her criteria, and has a smooth and successful surgery. The DBS has been implanted perfectly, and the surgeon’s piece is finished.
Now what?
Unlike most surgical procedures, the closing stitch is just the beginning of the DBS journey. Once implanted, the device has to be programmed. DBS programming is a time- consuming and delicate process involving a great deal of interaction and communication between clinician and patient. There are varying levels of experience and training among the facilities associated with the implanting surgeons, and there has been little standardization in the practice of programming.
So, who are the programmers, and how are they trained?
Many of the comprehensive DBS centers have nurses providing the programming, some neurophysiologists program, and most movement disorder specialists have a working knowledge about programming, although the time-intensive nature of the work makes it difficult to integrate into their daily practice. Ocassionally, when there are no trained programmers in an area, the local Medtronic representative will provide the service.
Medtronic provides a basic beginners training session, but after that, the programmers are on their own to seek out more advanced training. Some will visit the more established centers to work with experienced programmers, and others do their best to figure it out as they work with the patients.
Recognizing this gap in service to the DBS community, Judy Blazer, of WE MOVE, joined forces with Margaret Tuchman and Carol Walton, of The Parkinson Alliance, to start an initiative for education and information exchange. This has resulted in the programmers forum, a part of MDVU (Movement Disorders Virtual University—see page 1 of this newsletter for more information), providing a place for experienced and novice programmers to exchange information, ideas, and knowledge.
In its infancy, the forum is open only to practicing clinical professionals. Summaries of the programmers forum will periodically be made available on the DBS-STN.org site.
Kudos to Ms. Blazer, Tuchman and Walton, for having the vision, making it happen, and providing a valuable and much needed tool for our community!
Roberta Rubin has been working in the field of Neurosurgery for 22 years, and specializing in Movement Disorders surgery for the past 13 years.
Return to top
7. Past Events — Carnegie Center 5K & Fun Run, West Windsor, NJ
October 2, 2004, West Windsor, NJ
More than 400 runners, walkers and volunteers gathered on Saturday, October 2 in West Windsor, NJ, for the 5th annual Carnegie Center 5K and Fun Run to raise funds for The Parkinson Alliance. The event raised a magnificent $35,000!
It was an early start as young runners set off in the one mile Fun Run, while parents and adults tackled the 5K. All child winners received their own runner’s trophy while the top men’s winner, Daniel Feder, with a time of 16:28, and the top women’s winner, Katie Kellner, with a time of 21:26 walked away with a trophy and special prizes. For all other race times, visit www.compuscore.com/cs2004/october/carnegi1.asp.
Prior to the 5K, the Honorable Rush Holt (D-12th) addressed the audience and talked about the progress and the importance of Parkinson’s research. After the race, enthusiastic volunteers served a spread of drinks, snacks, sandwiches, and pizza for the runners to enjoy. Commercial real estate broker and Race Director Jerry Fennelly, his wife Nancy, NAI Fennelly and generous corporate sponsors like Interpool, Tyco, Yardville National Bank, Boston Properties, GE Healthcare, and Washington Group International helped to make this event another great success. “This gets us one step closer to the cure,” says Carol Walton, Executive Director of The Parkinson Alliance.
Photos: (top) Jerry Fennelly addresses the 5K crowd; (left) Daniel Feder with his son, another winner; (right) Katie Kellner.
Past Events — “A Step Ahead, A Positive You” Fashion Show & Luncheon
October 24, 2004, West Windsor, NJ
On Sunday, October 24th, nearly 400 people gathered at The Hyatt Regency Princeton to attend “A Step Ahead: A Positive You,” a fashion show and luncheon that raised $40,000.
The crowd began gathering mid-day to enjoy light hors d’oeuvres while viewing and taking chances on over forty gift auction items—such as autographed sports memorabilia, designer clothing, gift certificates, and various gift baskets—and the “Super Raffle” prizes that included a deluxe cruise for two with airfare, a four day spa vacation with airfare, and a handcrafted San Francisco Victorian doll house. In all, over $25,000 in items were donated from local vendors and businesses. During the luncheon, the lucky winners of the gift auction were announced and their prizes delivered. After lunch was served, the fashion show delighted the crowd and featured items from Hedy Shepard, Ltd., Forest Jewelers, Step by Step, Suit World, and Foot Solutions. All 59 models who strutted the runway were local volunteers—moms, dads, grandparents, and grandkids—a true community effort. The delightful show concluded with the announcement of the Super Raffle prizewinners. Linda Meisel of Princeton, NJ won the cruise package; Howard Hall of New Hope, Pennsylvania won the spa package; and Anne Merlino of Ewing, NJ won the Victorian dollhouse.
Instrumental in the success of the event were Gail Ruderman and Tracey Destribats who served as co-chairs; Rachel Rabinowitz and Lynn Rabinowitz of Hedy Shepard Ltd. who coordinated the fashions; Metropolis Spa Salon for providing hair and makeup services to the models; Forget Me Not Florist of Hopewell for providing table centerpieces; and Bristol-Myers Squibb, Yardville National Bank, Grand Bank, and Kyowa Pharmaceutical, Inc. for sponsor support.
Return to top
9. Upcoming Events - 2004
March 6th — Team Parkinson at the Los Angeles Marathon
Support Team Parkinson in its sixth year participating in the L.A. Marathon. Formed in 2000, Team Parkinson is an official charity of the L.A. Marathon and is a non-profit organization staffed by volunteers and dedicated to finding a cure for Parkinson’s disease. For more information, visit www.teamparkinsonla.org.
April 16th —Parkinson’s Parkinson Alliance
Join us, rain or shine, for the 11th annual Parkinson Alliance in Central Park, New York City. For more information, visit www.unitywalk.org.
May 1st — Team Parkinson at the Lilac Bloomsday Run
Bloomsday is an annual 7.46 mile fun run/walk in Spokane, Washington. Team Parkinson was the first official charity of Bloomsday 2004. For more information, visit www.teamparkinsonla.org.
May 18th — Putting for Parkinson’s Golf Outing–West
The Tuchman Foundation will again hold its annual golf tournament at the beautiful Chardonnay Country Club’s Shakespeare Course in Napa Valley, CA. All proceeds will directly benefit Parkinson’s research.
July 31st — Team Parkinson at the San Francisco Marathon
Team Parkinson is an official charity of the San Francisco Marathon. Join Team Parkinson in its first year of participation in the San Francisco Marathon. For more information, visit www.teamparkinsonla.org.
September 26th — Putting for Parkinson’s Golf Outing–East
The Parkinson Alliance and The Tuchman Foundation are again combining forces this year providing a great opportunity to raise funds. This golf outing will be held at Forsgate Country Club in Jamesburg, NJ.
October 1st — Carnegie Center 5K & Fun Run
Our 5K and one-mile fun run, where walkers and families are also welcome, is held annually at the Carnegie Center in Princeton, NJ. Food and refreshments will be served and awards will be given to age-category and group team winners. Relatively flat course. USATF-NJ Certified Course.
Return to top
10. Updating our Mailing List
Receive The Catalyst by mail by making a donation of $25 or more yearly to The Parkinson Alliance.
Updating our Mailing List …
If your name or address is incorrect on this newsletter’s mailing label, please let us know. If you receive multiple copies of this newsletter, please notify us so that we can correct our mistake.
Return to top
The Parkinson Alliance
211 College Road East, 3rd Floor
Princeton, NJ 08540
1-800-579-8440
609-688-0870
fax: 609-688-0875
http://www.parkinsonalliance.org
e-mail: admin@parkinsonalliance.org
Return to top
Return to The Newsletter Page