In hindsight, it is clear that the fickle hand of fate had finally fumbled in our favor. We met on a spring afternoon in 2006 in a local pie shop, brought together by the proverbial “friend of a friend.” I am an attorney who was forced to abandon my profession in early 2002 due to my rapidly deteriorating health condition. Ten years previously, I had been diagnosed with early onset Parkinson’s Disease (PD) at age 38. My colleague and ultimate dear friend, Kate Kelsall, who with multiple degrees ranging from a Masters in Social Work to a Certified Public Accountant, was facing the same painful decision that I had faced earlier. Kate was considering whether or not to retire on disability from her beloved position as Coordinator of Volunteer Services at the University of Colorado Hospital due to early onset PD. Kate was diagnosed ten years earlier at age 46.
Despite our separate paths, both of us had arrived at the doorstep of Deep Brain Stimulation (DBS) surgery and indeed crossed the threshold. I had my first DBS surgery in 2002 at Swedish Medical Center in my hometown of Denver, Colorado. Kate, as a patient of Kaiser Permanente, had traveled to Sacramento, California for her surgery in 2005. Of course, we each have endured trials and tribulations along the way.
However, the more interesting story from our perspectives is how circumstances conspired to bring us together. Both of us had lamented the need for a special support group to address the unique concerns of DBS patients. We had unique concerns above and beyond those addressed in a regular PD support group, and thought others who had experienced DBS might have similar issues.
It was in that spirit that Kate and I organized the first and only DBS support group in the Denver metro area with the first meeting being held in October 2006. Although originally conceived as a support group for those who had already undergone DBS, the group quickly expanded to include candidates for DBS as well. In little more than a year, our membership has grown in excess of 70 members. It encompasses patients and their loved ones, medical professionals, as well as the renowned filmmaker of the short documentary “Shaken.” (This film poignantly chronicles the struggles of one of our fellow group members as he attempts to cope with this cruel illness with all the grace, humor and dignity which he can muster.) After a year of meeting quarterly, the group recently decided to begin meeting monthly with guest speakers periodically scheduled.
Like all afflicted with PD, even after DBS, some days are better than others for both Kate and me. Wanting to make the most of our good moments, however, we began to explore other avenues for making a contribution to our peers. During this process of exploration, we realized how much we would have benefited had we been able to meet and speak prior to our DBS surgeries with people who had already gone through the experience.
This realization of lessons learned, coupled with the void which we both felt having been forced by illness to abandon our chosen professions, spurred Kate to draft a description for a volunteer position in which we could continue to contribute in a meaningful fashion. She submitted it for the consideration of hospital administrators and the medical professionals on the DBS team at the University of Colorado Hospital. Neurosurgeon, Dr. Steven Ojemann, spearheads the team together with movement disorder neurologist, Dr. Olga Klepitskaya, who completed a fellowship in DBS at Stanford University Medical Center in 2006. With their approval and support, Kate and I commenced our volunteer duties as “DBS Patient and Family Liaisons” and official members of the DBS team at the University of Colorado Hospital in October 2007.
Since coming on board, Kate and I have offered services which have run the gamut.
· We have met and spoken with prospective DBS candidates and their families both one on one and via our DBS support group meetings to discuss our personal experiences with DBS and explain the procedure in general in an effort to alleviate their fears and concerns as well as formulate realistic expectations with respect to the surgery.
· We have accompanied patients to their appointments, partially to provide moral support, but also to make suggestions to the other team members about how various aspects of the arduous evaluation process might be improved.
· We were enlisted to help locate suitable living arrangements for a DBS candidate from a neighboring state who had no local contacts and very little support from friends and family for proceeding with the surgery.
· On one occasion, at a patient’s request, we escorted her from the examining room to obtain a CT scan prior to surgery to insure her safe arrival. We assisted her in the process by completing the necessary forms while she was in an off-med and highly dyskinetic state. We were even able to clarify the lab tech’s misunderstanding of the doctor’s orders as to precisely what type of procedure he deemed necessary.
· We were recently asked to facilitate and expedite obtaining a letter from a patient’s doctor explaining DBS for a patient’s son who was in a military unit. Mere days before his father’s DBS surgery, the letter was faxed to the son’s commanding officer, and as a result of our intervention, he was accorded leave to attend his father’s surgery and assist the family in providing post-op care.
· We have provided comfort and moral support to patients as they undergo the relatively recent outpatient surgical procedure prior to DBS surgery which permits the use of a frameless stereotactic guidance system for more accurate placement of the electrodes in the brain during surgery.
· We have provided an empathetic ear to families and other loved ones by sitting with them during those seemingly interminable hours of waiting for the patient to emerge from DBS surgery as they move into recovery.
· We have visited with patients and their families in the Neurology-ICU unit following DBS surgery, as well as with patients admitted for in-patient rehabilitation services post-surgery.
Once when visiting an older woman who was undergoing rehabilitation services post-DBS, I discovered that the device that controlled her DBS system had been confiscated by hospital staff. Her programmer had previously pre-set the device to allow her to make adjustments to the neurostimulation within very narrow parameters. Despite the minor adjustment which she had self-administered earlier that day, by the time I arrived at the hospital the patient was experiencing acute distress, not only from the resulting dykinesia, but also from the nursing staff’s refusal to return the remote device to her so that she could return to her previous settings and thus alleviate the dyskinesia. In an effort to assuage the staff’s concerns, I explained to them that her neurologist had in fact approved the patient’s self-adjustments and that this was done only when the neurologist was confident that such pre-set adjustments were safe and within the patient’s prerogative. A note to that effect had apparently been inadvertently omitted from the patient’s chart. As a result of my intervention, the remote was ultimately returned to the patient. She was able to return to her original settings, thereby eliminating the troublesome dyskinesia caused by her adjustment.
Our most recent contribution has been a compilation of a timeline outlining the typical DBS evaluation and surgical process at the University of Colorado Hospital. This has been approved for distribution to prospective DBS candidates.
On a larger scale, due to Kate’s tremendously successful blog, Shake, Rattle and Roll, about the challenges of living with PD and DBS, the work which we are doing in the DBS community has garnered wider attention. It has brought us into contact with many people around the world who have shared similar experiences.
More recently, Kate and I have been invited to share our personal experiences with DBS at local educational seminars for the public in the Denver metro area. We’ve also been invited to participate both as speakers and to demonstrate the intricacies of DBS programming at professional presentations to medical residents, faculty, rehabilitation and nursing staff.
Only five months into our latest endeavor as hospital volunteers, Kate and I enthusiastically anticipate even greater opportunities to serve the DBS community as volunteers. Neither of us could have possibly imagined the course our lives and volunteer efforts have taken. Nevertheless, we both agree that this is by far the most personally rewarding work we have ever had the privilege to be engaged in!