About DBS-STN.org
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? A decade ago, pallidotomy was touted as the answer; and there was meager statistical information available pro or con. The big difference between Pallidotomy (ablative surgery) and DBS 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.
For the past few years, Deep Brain Stimulation (DBS) became the star. But which DBS, and where should one go for the best care?
There are three sites that are used to treat PD using deep brain stimulation: (1) the thalamus if the patient has tremors only; (2) the globus pallidus to ease dyskinesia resulting from the side effects of levodopa and rigidity; and (3) the subthalamus (STN), which is especially effective if done bilaterally. DBS-STN has the capability to improve most of the motor symptoms of PD, including tremor, rigidity, balance, gait, and dyskinesia. Dyskinesias improve because the patient may not need any levodpa or much less than before surgery.
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 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-STN experience. Since Margaret had STN, her interest was DBS-STN specific, rather than the general DBS arena. 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 giving 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. The results of that survey are available here.
The first survey not only provided answers, but resulted in more questions and the desire to address ongoing quality of life issues within the DBS-STN community. Focus 1, the second subsequent survey, addressed the change of symptoms prior to and after DBS. The results of that survey are available here.
New Vistas to Explore
After analyzing the results of the third survey, Focus 2, which consisted of demographic information, a quality of life questionnaire and a depression questionnaire we realized the importance of creating a QoL survey specific to our own population. Our Ph.D. fellows enthusiastically accepted the task. As a result , we have expanded the scope of the survey data collection and are now offering surveys to an extended population that will include:
- All DBS patients, regardless which form of DBS (sTN, DBS, Globus Pallidus DBS or Vim(thalamic) DBS they had;
- Patients are past 6 months from date of surgery;
- had either bi-lateral or uni-lateral; and
- non-DBS PWPs who did not have surgery and continue to take medication as their primary form of treatment.
When developing the Core Survey, see the resulting First Report here, we were most interested in chronicling the experiences of PWPs who opted for bi-lateral surgery in the STN and who had passed their 6 month post surgery anniversary.
We learned from analyzing the responses from the 2nd survey (Focus 1), that respondents were unsure of the extent and nature of their progress after surgery, and had problems remembering their true condition in the past, pre-surgery because ‘perception’ colors the memory.
Our survey population was steady as shown by the number of repeat patients and care partners who took part in the 3 surveys. In fact, the establishment of our Beta group was the result of recognizing that 32 survey participants had taken part in the 3 major surveys containing sub-sets of questionnaires. We are creating a longitudinal study to examine their progression at different stages of the disease.
The questions relating demographical and personal information in the Core survey would be considered the base line and the subsequent QoL surveys would be distributed at yet to be determined intervals. Focus topics that will be selected, such as sleep disorders, hallucinations, speech, cognition, etc will be assessed by standardized scales with the longitudinal data analyzed using intricate statistical methods.
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 caretaker and caretaker and doctor.
In summary, there are major changes in the approach we will be pursuing in the future surveys:
- We will construct a Quality of Life (QoL) instrument that is specifically created for the Parkinson Alliance (PAQoL). The final form of this instrument and the analysis of the future periodic responses received will be under the jurisdiction of our highly qualified Ph.D. fellows working with us.
- We will measure differences in the QoL between the DBS group and non-DBS group
- We will use a Beta group of patients who have taken part in all our surveys to test responses to the new PAQol and focus topics, as they occur, such as anxiety, cognition, speech, non-motor symptoms, social isolation, effects of physical exercise, changes in types and levels of medication, etc.
- We are discovering that the focus topics we will be covering may have a parallel research project that we could connect to and include questions from the researchers to include in our survey.
- We intend to find out whether the three groups of PWPs with varying levels of disease history, type of treatment and progression of the disease have identifiable and measurable differences in the quality of life scores.
- Phone contact to the Beta Group will be made by staff and volunteers to alert them to their new, special status and to find out if they can continue to take part in the upcoming newly formulated surveys. They will be the responders to our new surveys to judge its relevance, ease of understanding, clear sentence structure, etc.
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 money for pilot study programs that allow researchers to qualify for major funding from the National Institutes of Health. The Tuchman Foundation matches all donations to The Parkinson Alliance dollar for dollar. This matching funds program helps pay the administrative costs for The Parkinson Alliance and provides the Alliance with the unique ability to spend 100% of all individual donations and all net proceeds of events directly on research.
Contact Margaret
More information about The Parkinson Alliance