 |
 |
Welcome Kris and Marcel and thank you for telling the remarkable story of Marcel's surgeries to improve his pd symptoms. You certainly will have much to share with the list re:volunteering with PD patients. I look forward to hearing more from you. A student from Belgium stayed with our family when performing in our town as part of the group, Up With People. She told me that the king of Belgium has PD. Jeanette Fuhr 49-age now/47-age diagnosed/44?age symptoms started Kris Van Bogaert said in part: From: Kris Van Bogaert <[log in to unmask]> Date: Thursday, October 07, 1999 4:03 PM For some months now I have been following your postings and I thought it's about time to introduce myself. My name is Kris, I live in Belgium together with my husband Marcel, who was confronted with Parkinson's disease at the age of 27. ....... 20 years after the onset, Marcel was totally dependent on others for his routine daily activities. Quality of life had decreased to the lowest point possible. In march 1996 our life changed, he received his first DBS, unilateral right sided pallidal stimulation with initially a great success with great improvement of most of the symptoms and dyskinesias. Several months later, however, severe dyskinesias developed on the left side and in mutual unnderstanding with our neurologist Dr. Chris van der Linden, we decided and go ahead with a second pallidal stimulation, however, without much success. He continued with side effects and the medication did not work sufficiently. Meanwhile, the team in Ghent decided to switch to the STN target in the summer of 1997. As a volunteer working for the Young Parkinson patient support group I saw PD patients on a weekly basis. Most of my job consists of supporting patients before, during and after surgery. I am present in the operating room to help patients make them feel more comfortable. The results were really astonishing, so my husband could choose to have an operation for the third time. Three times, last time? Absolutely, on june 6 1998, Marcel got his bilateral STN and life has changed ever since than. He is totally releaved from all his symptoms and side effects. Medication is reduced to one third of the pre-op medication. Before surgery he was taken 23 pills a day!!!! We live again like we lived before the Parkinson struck us: bicycling, walking, working in the yard, making trips, visit restaurants and our social life is flourishing. I would recommend this surgery for everyone, if you are a good candidate, don't even have any doubts about it. De surgery is reversible, which is very important for new future treatments. I respect anybodies opinion, but the criticising Dr. Chris van der Linden is not fair. He is a very good physician, very alert, not dogmatic, always open for new ideas and concerned about his patients. He is always available if you need him and last but not least his knowledge and experience with respect to Parkinson's disease and treatment, including off course DBS, is very wide. He has been able to select the best candidates for the surgery and therefore, I believe, excellent results. Next time, I would like to inform you about my volunteer work as a patient coordinator of the Parkinson support group in Belgium. Warmest regards to all of you. Kris and Marcel