What does it mean to be “a program?” Let me give you an excellent example. The Parkinson’s & Movement Disorders Program
here at Froedtert & The Medical College of Wisconsin has a large, interdisciplinary team serving the needs of patients and families with Parkinson’s and other movement disorders. There are three physicians, Karen Blindauer, MD, Brad Hiner, MD, and Katie Spangler, MD. They are each neurologists who have specialized training and experience in movement disorders.
All of the nurses and neuro-rehabilitation therapists (physical therapy, occupational therapy and speech therapy) have specialized training in Parkinson’s disease. The team uses the services of a neuropsychologist, clinical psychologist, psychiatrist, registered dietician, social worker, research coordinator and outreach coordinator as well as a neurosurgeon and his team who handle deep brain stimulation
(DBS) surgeries. DBS is a treatment option for about 15 percent of people with Parkinson’s as well as for people with essential tremor and dystonia.
These people meet every week to improve service to patients, to discuss candidates for DBS and to learn about community resources for our patients both inside and outside the Froedtert & The Medical College system. Working together and supporting each other is an essential component of teamwork.
A new patient is educated about their disease through written information and a "Newly Diagnosed Orientation." Annually, there is a symposium for People with Parkinson’s and their families. Sept. 15, 2012, is the date for this year’s symposium at the Country Springs Conference Center. Over 400 people attend. Currently there is still space available. To register, call 1-800-272-3666. The program is rich again this year with Andrew Feigin, MD, movement disorders neurologist from the Feinstein Institute for Medical Research of the North Shore-LIJ Health System in Manhasset, NY, speaking on genetic therapy for Parkinson's. Christa Lassen-Vogel from the Davis Phinney Foundation will outline holistic approaches to managing Parkinson’s, and Patrick Dean, founder and director of the Wisconsin Grief Education Center, will conduct a caregiver-only breakout session on the small and continuous losses that people experience — and grieve for — when living with a loved one with Parkinson’s. Dr. Blindauer will give a fascinating look at Parkinson’s “under the microscope.” The research of Dr. Heiko Braak will be discussed along with non-motor symptoms of Parkinson's. It’s clear that there is often a lot more going on than simply a loss of dopamine and Dr. Blindauer will explain this. There are other talks and exhibitors that provide services and goods that make life easier for people with Parkinson’s. It’s the best deal around for $10 including breakfast and lunch!
Patients and families receive support in many forms. There are 5 Parkinson's support groups, one essential tremor group and one Huntington’s disease group on campus and in the community. The services of the team social worker, psychologists and psychiatrist are utilized. Our community outreach coordinator also serves as a one-on-one contact by phone and in clinic with families that are struggling. Caregivers are of special concern for the program. If they “go down”, the whole ship sinks! The monthly caregiver support group is well-attended as is the Caregiver Holiday Tea. This year, on Saturday, Nov. 10, the program will present “A Survival Training Workshop for Caregivers” of people with Parkinson’s, Huntington’s and other movement disorders. The program offers support for the Huntington’s Disease Society of America’s state conference and is planning a social event for people with Huntington’s in their 20s 30s and early 40s with the hope that these folks would meet more regularly. The program will be at the Country Springs Conference Center in Waukesha. The fee for the event has yet to be determined, but it will be no more than $20. Call 1-800-272-3666 to hold a spot.
Financial support is also offered to various community exercise programs for people with Parkinson’s because exercise can reduce stress, improve balance and flexibility, and hold some symptoms at bay. Additionally, group exercise promotes socialization, which is so good for the brain and the spirit.
How does all of this get paid for? The program offers the Symposium (for a minimal $10 per person); pays professional support group speakers; distributes loads of books and other written and other video materials; sends nurses and therapists for training in the latest treatment programs for Parkinson’s; makes financial contributions to four Parkinson's exercise/dance programs in the area; and this year, brings in a national speaker to work with our caregivers.
Once a year, the program raises funds. Moving Forward: Ride/Run for Parkinson’s
is a day for people with Parkinson’s and their friends and families. No one talks much about Parkinson’s. People just have fun — exercising and socializing, eating and playing, entertaining their children and grandchildren. This year, Moving Forward: Ride/Walk for Parkinson’s takes place on Sunday, Oct. 7 from 8:30 a.m. to 1:00 p.m. in downtown Dousman. This will be the 4th Moving Forward event. Each year all of the money that is raised is spent on education and support for people with Parkinson’s and their families. Consider coming or donating to Moving Forward at http://www.active.com/event_detail.cfm?event_id=2039260
. Or contact me at vconte "at" mcw.edu.