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Ohhh David! Dad REALLY ABSOLUTELY needs to get an evaluation by a movement disorder SPECIALIST! And his crummy surgeon should be put up against a wall and shot! (err... I'm not ordinarily this violent!) Communication between the Parkie, their family/loved ones and caregiver is a MUST, considering the symptoms of this disease frequently change from person-to-person. But communication IS like a two-way street - "traffic" must go BOTH ways. That second opinion by a movement disorder specialist who has TREATED a number of Parkies AND ongoing communication are ALMOST more important than meds or surgeries to the patient, I believe! I won't go into all the aspects of Parkinson's, 'cause you're going to be swamped with information from some of THE most Parkinson's-savvy individuals you'll ever come across - my fellow PD-List members - our Parkinson's Cyber-family. Errrrr.... it sure sounds like your dad is a creature of habit, and that he CAN be an independent cuss - to his detriment, sometimes. Darn! While that CAN be a bonus when there's no need for mutual cooperation, in THIS situation, it seems to hinder your father. Barb Mallut (54/21 yrs PD, unilateral pallidotomy, Sinemet/Mirapex) [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of David Tyler Sent: Tuesday, October 14, 1997 3:21 AM To: Multiple recipients of list PARKINSN Subject: New member of list seeks help for father + pallidotomy Hello from Melbourne, Australia I have joined the list to try to help my father, John, who was diagnosed with Parkinson's a few years ago. He joined a support group in Napier, New Zealand, where he resides, but I am worried about the quality of the support. On the one hand, it is wonderful to see such mutual support. On the other hand, he tells me he has 'the shakes' the worst of any in his group. Thus the group is a mixed blessing. John, is 78. His wife died of cancer in 1986. He is a fiercely independent character. He underwent a pallidotomy last year which was supposed to subdue the tremors on one side. It didn't. Now he is contemplating similar surgery on the other side. The doctor who performed the operation has had nothing to say to him. Nor has he been communicative with any member of the family. Dad is a highly intelligent but fatalistic character. His view of the surgery is that the doctor is simply using him as a guinea-pig. 'He needs to get his numbers up so that he can have a quota to use the hospital.' 'What have I got to lose?' I feel like saying 'blindness and dementia to start with...' I guess I have a number of questions to put to members of the list. Am I right in trying to dissuade him from the pallidotomy? What am I to make of such a 'laconic' to quote Dad, neurosurgeon? How do I get him to seek more than one medical opinion as to the nature of his Parkinson's? He persists with the same GP he has gone to for decades. Every illness he has or every symptom is attributed to Parkinson''s. It was only when a locum was treating him that his gall-bladder problem was correctly diagnosed. Has he been correctly assessed? It seems that he did not have a good reaction to L-Dopa and this alone, in my opinion, would make a second opinion - or some sort of review worthwhile. He has taken molasses daily for decades. Is this wise? He does have pernicious anaemia. In the light of what I have read about the link between the capacity of your system to metabolise iron and Parkinson's - I have more than a few misgivings. As a layman, I would suspect that his attempt to boost his iron levels is quite futile. Any ideas on any one or all of these topics welcome. Whenever I ask him how he is going, he has two replies: 'I shake a bit, you know.' 'Its progress is inexorable.' Thanks, David Tyler