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TO: All I feel very bad that Dr. Fink has decided Don Berns and Robert Iacono are bad for the PD patient population. Dr. Fink's comments almost hint of "Success breeds contempt." I have known Don Berns for a number of years. Recently I published a profile written by Don of his life with PD. I have included it for your evaluation. Let me add one additional comment. This Parkinson Digest is for people to ask questions of the members. We want to know what others are doing for specific problems. This does not need to be scientific. If it works for you, I may try it. If it works for me, I have benefited from this exchange. The decision to use the information is mine. At the same time I reserve the right to tell members of fantastic results and ring the bell of the provider or what ever. I also reserve the right to tell members of what does not work and rap the bell around the neck of the provider or what ever. I have the utmost respect for the ability of patients of make valid emotional decisions. And believe me, neurosurgery is an emotional decision and playing around with neurotransmitters, which is what PD is all about. I have had a pallidodomy and know what I went through in making the decision. Here is Don Berns story as he told it. You make up your mind. ------------------------------------------------------------------------------ --- I NO LONGER AM PLAGUED ... Profile of Reverend Dr. Donald Berns Reprinted from Movers & Shakers, Volume 3, Number 4, 1994 It was near the end of March, 1981. I drove the freeway from the doctor's office in Pasadena to my home in La Canada. I had spent a frightening half-hour with my neurologist concerning a slight tremor in my left hand. He wanted me to check into the hospital the very next day. I was to undergo a series of tests looking for something as sinister as a brain tumor. As I drove my whole life seemed to pass before my watery eyes. Why? Why, just when I was coming into the prime of my life at age 33, with two small children and a lovely wife of ten years, did I suddenly come face to face with my own mortality? Surely this is a mistake. This couldn't be happening to me. Someone wake me from this nightmare! At the end of three days of testing nothing turned up. I was left to wait with a whole series of unanswered questions. It was three months later during an office visit that my neurologist said those prophetic words, "I think you may have Parkinson's disease. You're the wrong age for it, but let's try you on some Sinemet and see what happens." The first four years with my new-found partner were rather uneventful. Outside of some minor aches, an occasional tremor, and a chronic stiff neck my life progressed rather uneventfully. I went to a number of prayer and heal ing meetings. Being a Presbyterian pastor in the Christian community, people were always willing to take me to their favorite pray-er and healer. I went to some prayer and healing services -- some were very positive experien ces and some were very negative experiences. I finally came to the point of 'being healed of the need to be healed.' I realized I could spend my whole life looking for someone to pray for me. In a biblical sense this was to be a redemptive period of suffering. The apostle Paul had a sore in the flesh which was not removed even though he asked the Lord three times to have it removed. I came to the understanding that this was my thorn in the flesh. I should make the best of it and go on with my life in a positive direction. This helped me re-focus my life during this very important period. Then I began to experience some unusual writhing motions. I was later to find out these were dyskinetic movements - the result of too much medication in my system. Yet, when I cut back on my medications I would suffer the frustration of getting "slowed down". Finally, in 1986, I decided it was time to move from being a passive patient to an active patient. I began to read everything I could about Parkinson's disease, even those hard to read medical newsletters that mince no words in describing all the acute symptoms and experimental treatments. I decided that it was time to get more aggressive medically. I was going to get in touch with some of the experts. I made an appointment with Dr. J. William Langston in San Jose on October 8, 1986. After an hour and a half with Dr. Langston, whom I liked very much, I came away hopeful about discoveries which lay just around the corner. He said I needed to keep working with the process of constant fine-tuning my medications and he helped me do it. Then in the spring of 1987 a new opportunity presented itself, adrenal graft implantation. There was a program starting at Vanderbilt University. They were seeking to duplicate the spectacular results achieved in Mexico. I signed up to have the surgery and was selected from literally hundreds of applicants. I was in the second group of five and had the surgery on July 29, 1987. They took out one of my adrenal glands, harvested the medullary cells, and implanted them deep within my brain in a region called the Caudate Nucleus. In addition they implanted a small plastic shunt in the left side of my head extending down into the third ventricle. After 3-4 days in the Intensive Care Unit, two weeks in the hospital, numerous "taps" (procedure where they shave one's head and stick needles into the implanted shunt to draw off some cerebrospinal fluid), and regular monthly return trips to Vanderbilt, the end of a year arrived with the results seemingly maxed out. Physically, my Parkinson's disease was no better than when I started this procedure. However, I found myself in a far different spot emotionally. I had taken the bull by the horns, rather than just passively sit back and watch myself slowly deteriorate. I had pushed myself forward onto the cutting edge. I felt good that I had done everything within my power to fight this ruthless intruder. Furthermore I was now in touch with Dr. Stan Burns, a very knowledgeable neurologist who had directed the Vanderbilt program. In addition I had met a wonderful group of like-minded parkinsonians who were "overcomers". The meager surgical results were expectedly disappointing. In 1987, my job description as a pastor at La Canada Presbyterian Church was changed to accommodate my growing limitations. Finally in August 1989, I faced the inescapable Retirement On Disability, words which had a bitter and unequivocal ring to them. My wife, Karen, throughout this ordeal has been very loving and most supportive. She has challenged me to be the best I could be without frustrating me with unrealistic expectations. She has been my helper without being a rescuer. One thing that I learned along the way was that I had to help others to deal with my disease. This was actually more difficult than my learning to deal with PD. People who loved me tried to rescue me and take me out of everything. They wanted to do things for me. This was not what I needed, yet it was very tricky to explain that at one moment I needed their help and at another moment I would be able to do it myself. One of the very important revelations to me was that the Lord had now given me a Ministry of Being rather than a Ministry of Doing. Some days I was not able to do anything. People could still take encouragement just seeing me. Recently a woman shared her story that she had been depressed and suicidal. She was thinking of using a bottle of pills to end her life. At that moment my face flashed in front of her and she thought that if Don can live with PD, how can I think of taking my life? She put the pills away. We never know how many people we help through our illness just because of our primary act of Being. Meanwhile I continually try new and different medications to supplement Sinemet. First there was Parlodel, then Eldepryl, followed by Sinemet CR. In each case the improvement I received from the drugs seemed overshadowed by the progressive degeneration of the disease. Then in May I attended a state-wide YPSN meeting in San Diego where I heard Dr. Robert Iacono make the statement, "I'm not doing any more fetal cell implants because the pallidotomy is so much more effective." After his presentation I spoke with Dr. Iacono and he thought I would be a good candidate for the pallidotomy. I made an appointment and proceeded to move ahead toward a pallidotomy. I had a small setback. The shunt installed in 1987 needed removal Surgery for the pallidotomy was scheduled for December 1. I asked Dr. Iacono about the possibility of doing both sides at the same time. I did not want to come back six months later to have the other side done. His initial response was doing both sides would be too risky and it had not been done before. However, two weeks before my surgical date Dr. Iacono felt confident enough in the pallidotomy procedure to attempt to do the second side in the same operation. So we decided to go for it if the first side went well. The first surgery went so well that he did the second side in just three and a half hours. On December 7, 1993, I wrote the following: "The bilateral pallidotomy seems to be a complete success. I no longer am plagued with stiffness, immobility, tremor, excessive sweating, akinesia, bradykinesia, dyskinesia, walking difficulties, stooped posture, swallowing difficulties, or speech hindrances. My eyes and mouth remain shut at night while I sleep rather than both remaining partially open. There is no longer an ON-OFF phenomenon. My handwriting is normal and there is no stiffness in my back and neck area. My sense of smell is improved. My appetite improved and food tastes better. "My voice is strong again. My face is expressive and noticeably different. I no longer have a sense of urgency when I need to urinate. I do not need to lie down for three hours in the afternoon because my body is so slowed down. I no longer take a sleeping pill because I now sleep through the night. My appetite has returned and eating is a joy rather than a chore. Both my arms swing freely when I walk. My gait is loose and normal. Karen says my hands feel soft and pliable, rather than stiff and tense. I move about easily, freely and naturally. The only abnormality has been occasional tremor bursts (lasting perhaps a minute) in my left arm (perhaps every other day)." "PRAISE THE LORD" Karen and I have two children: Jason, who is now 21 and Joy, who is now 17. Jason remembered me before PD. I was able to play basketball and tennis with him. He really experienced a grief process seeing me deteriorate. It was one of the worst things that could happen to him. For my daughter, Joy, Dad was always a little weird. She had never known anything different. Following the pallidotomy for Jason there was a great sense of delight and tears unbounded, for he got his Dad back. For Joy, it was also a great time. I was a new Dad who could do so much more. Dad had always been moving and shaking. Now Dad could go to her games, be with her friends and not be so weird all the time. Today, September 8, 1994, I continue to experience the miraculous benefits of the pallidotomy. My life has been absolutely transformed, given back to me, regained through this procedure under the skillful hands of Dr. Iacono. Since the surgery I have a new appreciation for life. I now try to squeeze out every delicious moment of my new life. I still have Parkinson's disease, but I have won a battle and it feels great. Since the surgery I have skied in Utah for a week, surfed at San Clemente, skydived from 12,500 feet, hang glided, water skied as well as played tennis and golf on a weekly basis. I believe the pallidotomy has truly entered us into a new era in treatment of Parkinson's disease -- one filled with great hope. Rev. Dr. Don Berns 4943 Del Monte Road La Canada, CA 91011 Tel: (818) 790-8812 EMAIL: [log in to unmask] ----------------------------------------------------------------------------- Regards, Alan Bonander ([log in to unmask]) PS: Thanks, Don, for the profile. I didn't ask if I could use it here, but your story is powerful, even without the pallidotomy. I might add that Don is spending one day a week at Loma Linda Medical Center giving console and support to PD patients entering the pallidotomy program. A well deserved and special thanks to a dear friend of mine and a friend of many fellow suffers of PD.