May 20 Overview of “in home” exercise programs – Dan Spangler will be reminding us of
familiar programs available and some new ones. Remember exercise is the key.
June 17 Deep Brain Stimulation Roundtable – A panel of our Support Group members will
share their experiences and answer questions regarding their DBS surgeries.
Jul 15 Dr. Michael Munz, neurosurgeon, will be discusing all aspects of Deep Brain Stimulation. Couple this with our June DBS Roundtable, and they are two programs you won't want to miss.
Aug 19 Caring and Sharing. What an opportunity to find out how other Parkinsonian's and their caregivers are doing.
Sep 16 Dr. David Vargas, D.C., will share his views and experiences with acupuncture and it's effect on patients with Parkinson's disease.
April Meeting
Leo Rafail, BSW from IU Medical Center, entertained the group while discussing research and other ongoing programs at the IU Medical Center. Attendance exceeded his expectation, so we will be providing you with the hand –outs from the meeting. We had an enjoyable evening with practical advice. Thank you, Leo.
Also, listed below are some of he current research projects at the Indiana University Parkinson's clinic in Indianapolis. Check out the content, and contact the individual listed for more information and /or volunteer for a particular study. Names and telephone numbers are listed.
Concerning the research study; Dyadic Experiences of Advanced Chronic Neurologic Illness... there is a very strong possibility that Dr. Barbara Haberman, PhD, RN, Assoc. Prof., IUPUI School of Nursing, will conduct much of her research here in Fort Wayne, if she can find enough participants. To learn more and/or volunteer call Dan Spangler 260-486-4893 so we can make the necessary arrangements for dates, times, location, etc.
Clinical Research News
The Sure-PD Study: Unsuccessful Research Leads to Promising Study
Apr 27 2010
by Michael Schwarzschild, M.D., Ph.D., and Alberto Ascherio, M.D., Dr.P.H.
Parkinson’s disease (PD) patients are sometimes reluctant to participate in experimental drug trialsf because there is no guarantee of personal benefit from a study drug, or even of receiving the study drug rather than placebo. Others have no problem with these uncertainties because for them the personal benefit comes from knowing they are contributing to the discovery of new treatments that may help all people suffering from the disease. Yet even these “big picture” individuals can be discouraged from volunteering for demanding clinical research by the reality that any given drug trial faces long odds in the quest to establish a breakthrough treatment.
However, it should not be overlooked that studies that may seem to have failed at the time can provide unexpected and highly valuable data that can open doors to new ways of exploring PD. Take SURE-PD, a study of urate (uric acid) and Parkinson’s disease, for example. This research was inspired by two studies that were at least partially unsuccessful in achieving their desired outcomes, but led to preliminary data on an association between urate and Parkinson’s disease.
DATATOP, an 800 subject, government-sponsored multi-center clinical trial initiated in 1987 and published in the New England Journal of Medicine, successfully showed that the drug deprenyl (Selegiline) was effective in delaying the need to initiate levodopa therapy, though the significance of this finding was left uncertain. On the other hand, PRECEPT, an 806 subject, industry-sponsored multi-center study conducted a few years ago (2002-2003) and published in Neurology, was stopped early when the experimental drug was found not to delay the need for standard PD medication. But this initial disappointment has been replaced with excitement following a later analysis conducted on data derived from both studies by Michael A. Schwarzschild, M.D., Ph.D and Alberto Ascherio, M.D., Dr.P.H.
Schwarzschild and Ascherio with other members of the Parkinson Study Group who had conducted the DATATOP and PRECEPT trials ran an extensive analysis on cerebrospinal fluid (CSF), a clear fluid around the spinal cord and brain, and blood samples from the study cohorts and found that the progression of PD was slower in subjects who had higher levels of urate, a natural substance in the blood. The discovery fits well with the known action of urate as an antioxidant that protects cells from oxidative damage, which is akin to molecular rust that leads to the deterioration of brain cells. The findings raised the question as to whether urate might protect patients from the harmful effects of PD and thereby slow the progression of the disease. To explore this intriguing hypothesis Schwarzschild and Ascherio have undertaken a 90 subject phase II clinical trial funded by the Michael J. Fox Foundation for Parkinson’s Research (MJFF) that aims to examine the safety of raising urate levels in PD patients in an effort to develop a treatment that will slow down the disease (A Randomized, Double-Blind, Placebo-Controlled, Dose-Ranging Trial of Oral Inosine to Assess Safety and Ability to Elevate Urate in Early Parkinson's Disease (SURE-PD)).
However, it appears that PD patients who are willing and eligible to participate in clinical trials are much harder to come by than they were in the DATATOP and PRECEPT days. SURE-PD is a prime example of scientific leads languishing due to the scarcity of volunteers among the newly diagnosed/untreated patient population. It is critical that PD patients themselves get involved – even if they don’t meet eligibility criteria for early PD studies, patients can contribute by spreading the word and letting other patients in the community know about the importance of trial participation. Without clinical trial participants, new therapies and treatments cannot be researched and developed.
Remember it doesn’t matter when you volunteer to participate in a clinical trial, or the source of the funding, or even the results of the trial because the data and specimens that you provide can help to answer today’s questions and also have far reaching use and benefits years later.
Dr. Michael Schwarzschild is an Associate Professor of Neurology at Harvard Medical School and the director of the Molecular Neurobiology Lab at the MassGeneral Institute for Neurodegenerative Diseases (Massachusetts General Hospital). Dr. Alberto Ascherio is the Professor of Epidemiology and Nutrition at Harvard School of Public Health.
Pre-study data analysis was funded by the Parkinson's Disease Foundation with study funding by the Michael J. Fox Foundation for Parkinson's Research.
Register for the Monday, May 10 PDtrials Educational Webinar, "Lessons Learned: How Completed Parkinson’s Clinical Studies Help Shape the Future," to learn more about this issue.
Submitted by Dan Spangler from the April 2010 PD Trials newsletter
A Note from Dan Spangler
April has been a busy month.
The steering committee met, (Thanks for your guidance ladies and gentlemen),
We manned a booth at Turnstone’s DisABILITIES EXPO on April 10th. (Special THANKS... to the Adam’s, Aldridge’s, Garman’s, Hunt’s, and Spangler’s who did and excellent job manning the booth). We had fifty visitors, and made several excellent contacts. Six of those came to either our April meeting or to exercise class.
Speaking of which, we had over 50 at our April meeting and over 25 at our last exercise class. Keep up the good job of spreading the word about us. As attendance grows, that simply means more are getting the benefit of knowledge and/or exercise. TO THOSE OF YOU READING THIS… IF WE HAVEN’T SEEN YOU FOR A WHILE, AND YOU ARE ABLE, WE WOULD LOVE TO SEE YOU IN THE COMING MONTHS… JOIN US WON’T YOU!
Six of us ventured to Merrillville to attend the NW Indiana PD Symposium. I can tell you that the day was very beneficial. Much was gleaned from the talks, and much networking was accomplished to secure new programming ideas, and future speaker possibilities.
Much is going on… Some exciting things are incubating, and hopefully just waiting to hatch.
Caregiver Tips
Care for Yourself
Being a caregiver is or can be a 24 hour, 7 days a week job. Because of this, one of the biggest challenges you will face is being very tired. Your life can also be very challenging and frustrating because the time you have to yourself is limited.
You need some time alone to “recharge your batteries.” Don’t feel that you have to carry this alone. Involve your family, help each other. Don’t feel ashamed if you feel tired. It is important that you talk to each other. Just because your mate has PD doesn’t mean that they can’t support you emotionally. It is the “body” that doesn’t work, not the heart.
Some days might feel like a trip downhill, but you can still enjoy the scenery around you on the way! The next day might be better, so don’t give up.
Keep a strong body, mind and soul. Make sure you take time out for yourself, maybe a trip to the movies or a good walk each day, at least 30 minutes.
A primary priority must be to maintain yourself so that your second priority – the PD person – can get the help that he or she needs. As a caregiver, it’s important that you not feel guilty about wanting some time to yourself. It is not selfish to want this time, but absolutely necessary. Giving yourself a break and stepping back is good for you and the PD person.
Marcia A. McKibben
