Margaret and Martin Tuchman.
Margaret, a bilateral-STN patient, was diagnosed with Parkinson's over twenty year ago. In addition to being the Founder of DBS-STN.org, she is the President of The Parkinson Alliance.
As the Quality of Life issue becomes the primary consideration, PD patients reach out to sources available to help them make a choice about their next step: more pills, different combinations of pills, time interval changes, less protein, more rest, ad nauseam. Or, they consider the next big step: surgery.
But, which surgery? Over a couple decades ago, pallidotomy was touted as the answer; and there was meager statistical information available pro or con. Evolving from the palidotomy and subthalamotomy (ablative surgeries that therapeutically destroy brain tissue to reduce undesirable symptoms) came Deep Brain Stimulation (DBS) therapy. The big difference between Pallidotomy or Subthalamotomy and DBS therapy is that DBS does not cause irreversible damage to brain cells and is therefore – reversible. When the cure comes, the implanted devices can be removed.
Over the past several years, DBS has become the star. But DBS for which surgical site, and where should one go for the best care?
There are three primary target sites that are used to treat PD using deep brain stimulation: (1) the thalamus if the patient has tremors only; (2) the globus pallidus interna (GPi) to ease dyskinesia resulting from the side effects of levodopa and rigidity; and (3) the subthalamic nucleus (STN), which is especially effective if done bilaterally. DBS has the capability to improve most of the motor symptoms of PD, including tremor, rigidity, aspects of gait, and dyskinesia. Dyskinesias improve with DBS because the patient may be able to reduce parkinsonian medications.
PD patients found, as Margaret did in the year 2000, that there was no collective repository of information about the types of surgery, the selection criteria of the patients, a description of the patients' condition before, during and after surgery, and the protocol each surgical team uses. There was no cumulative, organized statistical data, since each facility maintains their own records and decides whether or not to publish their own stats.
In December of 2000, Margaret had very successful bi-lateral DBS-STN surgery at NYU School of Medicine, The Center for the Study and Treatment of Movement Disorders. As a result of her surgery, she was feeling better than she had felt for the previous 10 years, and she decided to “give back” to the PD DBS community.
She developed a list of questions, putting them into survey format. These questions were designed to give voice to and record the patients' point of view of the entire DBS experience. She created a DBS-STN Patient Survey in 2001 to record the reactions and feelings of the patients’ to their experiences pre-, during, and post surgery. The NYU surgical team served as an advisor in formulating the survey questions and gave her access to their patients, who were the first group to complete the survey. Margaret is sharing these experiences with peers and providing this information to the DBS-STN community.
New Vistas to Explore
We have expanded our research endeavors to 1. obtain a better understanding about the experience and well-being of individuals with PD who have received DBS, and 2. compare individuals with and without DBS in the context of both motor and non-motor symptoms related to PD. We use standardized scales and intricate statistical methods to obtain sound results. Including the Core Survey, we have conducted 14 surveys to date, investigating the experience of PWP as it relates to such topics as quality of life, coping with PD, resilience, balance, speech, pain, depression and anxiety, sleep, fatigue and apathy, and the broad scope of other non-motor symptoms.
The results of that survey are available here.
Thanks to the commitment to many PWPs and care partners, the number of participants in our surveys continues to grow with every research topic, and we have many repeat participants who have taken part in several surveys.
One of the important goals that we set for ourselves is to provide a tool to find a common language among the physicians, care partners and PWPs. Our surveys help define meaning, adding language to the feelings and perceptions of the patients thereby helping to facilitate understanding between the patient and doctor, patient and carer and carer and doctor.
Deep Brain Stimulation for Parkinson Disease: An Expert Consensus and Review of Key Issues
One of many facets of Margaret’s vision when she created The Parkinson Alliance and DBS-STN.org was to bridge the voice of the patient’s experience to the treatment providers in order to enhance the treatment effects for PD, as to improve quality of life for the individuals with PD. Through bringing together some of the world’s leaders in DBS therapy, she took a landmark step toward her vision. On April 1st-3rd, 2009 The Parkinson Alliance (with shared sponsorship provided by the Davis Phinney Foundation, the LSVT Foundation, and the National Parkinson Foundation) convened a panel of the world’s experts on DBS for PD. The task assigned to these experts was not to craft a typical consensus statement for themselves, but to come up with a document aimed squarely at their true customers—the patients.
These world leaders discussed the current matters related to DBS therapy and where we need to go with this intervention. The ultimate focus was on improving the effectiveness of the intervention and the quality of life of those individuals who have undergone or those who will choose to undergo DBS.
The topics of the Consensus Meeting were many and included patient selection, gait and speech DBS outcomes, non-motor DBS outcomes (mood and cognition) and long-term DBS outcomes, to name a few.
The final report, entitled “Deep brain stimulation for Parkinson disease: an expert consensus and review of key issues” has been published and can be accessed on our website.
Also, at the conclusion of the Consensus Meeting, a group of PD patients with and without DBS was invited to an open forum where several clinicians shared their experiences and answered the participants’ questions. A copy of the summary describing the important dialogue between patients and clinicians about many of the commonly asked questions that exist in the PD community can also be found on our website.
From The Parkinson Alliance to the DBS Community
Since the fall of 1995, Margaret found her life becoming more deeply involved with and learning about the People With Parkinson’s (PWP) community and their struggle to claim victory over the disease that has halted their lives. She and her husband, Martin, along with a group of activists, dedicated four years of concentration to have Congress pass a bill to guarantee the annual expenditure of 100 million dollars for Parkinson's disease research. The Morris K. Udall Parkinson's Research and Education Act was signed into law in the fall of 1997 by President Clinton. To qualify for Parkinson's research grant money from The National Institutes of Health (NIH) under the Udall Act, researchers must submit their scientific data with grant applications. The procedure is very costly, and often researchers do not have the funds required to compile the necessary data. This is when the seeds for a unique partnership were planted and The Tuchman Foundation and The Parkinson Alliance, both non-profit corporations based in Princeton, New Jersey, were planted.
The Tuchman Foundation was formed to foster philanthropic activities and chartable support from corporations, associations, and individuals throughout the country. The Tuchman Foundation’s main objective is supporting The Parkinson Alliance, whose mission is raising funds for the most promising Parkinson's disease research programs.
With The Parkinson Alliance in the capable hands of its Chief Executive Officer, Carol Walton, Margaret is devoting herself to helping improve the quality of life in the DBS community.
- The Parkinson Alliance
- Find a DBS Programmer
- Medtronic Deep Brain Stimulation Physician Locator
- LSVT Global
- National Parkinson Foundation – Surgery for Parkinson Disease
- We Move — Deep Brain Stimulation
- Medtronic Deep Brain Stimulation Therapy
- Fox Trial Finder
Clinics, Universities, and Foundations
- The Cleveland Clinic, Neuroscience Center, Deep Brain Stimulation
- Department of Neurological Surgery at UCSF, FAQ for Patients: Deep Brain Stimulation for Dystonia