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March 19, 2001 Monday Hello, I am finally thinking clearly today. The medication combination that my neurologist is trying me on has given me some relief. My doc(Dr. Marcus) and I discussed a lot of things on March 15th. I took my "questions and concerns" form. We first discussed the issue I had with pain. I am very thankful that this has been dealt with. This may be a little offensive to some. In order to get my severity of pain understood by my neurologist, I asked him if at sometime in his life had he ever been kicked in the testicles. He looked at me seriously and said "Yes". I then asked him, at the time he had been kicked, could he have made any kind of simple decisions? Like what to eat or could he complete any simple task? He said "No". I then told him to imagine that that intense pain would not go away for 10 days at a stretch. By deciding to be bold, I had the relief for pain that I have needed for a long time now. Now that I am in my 21st year of pd I have been having a question nag at me for quite some time. To be honest it has been troubling me now for 2 years. I knew now I felt I was strong enough to handle the answer. The question being, what stage have I progressed to? For those unaware of the STAGES OF PARKINSON'S DISEASE: The following scale, developed by Hoehn and Yahr, is the most widely used one to describe PD: Stage I: Signs of Parkinson's disease are unilateral(affecting one side of the body only). Stage II: Signs of Parkinson's disease are bilateral(affecting both sides of the body). Balance is not impaired. Stage III: Signs of Parkinson's disease are bilateral and balance is impaired. Stage IV: Parkinson's disease is functionally disabling. Stage V : Patient is confined to bed or wheelchair. ************************************************************** Please let me mention before I go any further. These stages are not written in stone. Please do not let these frighten anyone. Each individual is unique and different in the severity of their pd and the severity of symptoms. I asked Dr. Marcus what stage, while being on meds, have I progressed to. I asked Dr. Marcus what stage, without any medication, have I progressed to. Dr. Marcus did something interesting. He looked at me and very frankly said, "Sandra, you tell me what you believe the answers to be." This is why I like my neurologist as much as I do. We have a relationship. What I feel and think is important to Dr.Marcus. He thinks enough of me to respect how I feel and to respect my thoughts. I took a deep cleansing breath. I thought for a minute. I looked at my doc and said; "With medication at its optimum levels I feel that I am in between Stages 2 and 3. Without medication I am in the final stages of 5, critical care." Dr. Marcus said that I was absolutely correct. We discussed that it is very, very, important that I do all that I can to keep the sinemet working as it is. I am on the same amount of sinemet now as I was on when the neurologists first started me on it. I am so thankful for this. It takes constant work everyday to achieve these results. Nutrition, excercise, good attitude, and keeping myself knowledgable about current info on pd. The next thing Dr. Marcus and I discussed was the best clinical trial ongoing that Dr.Marcus would like to see me be a part of. That is the Amgen Drug Trial. I will be learning more about it at the Spring Rally with PLWP. Then we discussed how long I should be able to put off any kind of brain surgery. Dr. Marcus said if I continued to remain responsible and actively involved in my health and treatment of the Parkinson's, he believes I sould be able to put off any kind of brain surgery for 15 more years. I had tears in my eyes, immediately looked toward heaven and spoke a prayer of thanksgiving. I still know that there will be days that I will feel 70 or 80 years old. Yet, I also know that there are still symptom-free days for me. PWP'S and this list and PLWP have made such a difference in my life. I feel so much more alive. I love you guys with all of my heart and feel honored and blessed every single day to be able to put to good use the past 21 years here on the list and on Sandy's Parkie Porch. Nan and Bren, it will take me a lifetime to give back all that you have made possible for me. Faith and hope, Sandy ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn