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Sharon, Your sister seems to be demonstating many of the symptons that my wife has experienced over her 27 year fight with PD. She is now 56 years old. Like your sister she has had a pallidotomy with very good results. Dyskinesia was virtually eliminated. Tremor has been minor and manages well with medication. While few patients seem to progress in the same way. Here is how we deal with some of the symptoms you describe. 1. For the hallucinations and unusual behavior clozaril taken before bedtime is one of the few meds that works with out side effects on the other PD meds. Many neurologists won't prescribe it and will rely on a pychiatrist for input on that. We have found a GP who now prescibes it. It does require blood testing every two weeks for potential white blood cell count deficits. In six years we have not had a problem with this. 2. Reducing the high levels of sinemet that are needed seems to be a good thing to pursue. After testing Bromocriptine and Mirapex, and Requip we have returned to Permax as the best agonist. 3. The COMT inhibitors do work for Nancy and we have found Comtan to be the best. It has allowed her to reduce sinemet intake by almost 50%. 4. Panic attacks occur infrequently but result in very testy behavior patterns and unpleasantness. Ativan reigns in the panic in abot 20 minutes which is often followed by periods of rest/sleep and return to PD normal. 5. For reasons still unexplainable amantadine is a mainstay in my wife's medicines. It just seems to enable all the others. When she eliminates amantadine, all her phsical symptoms increase and then the pyschological frustrations associated with the physical losses often worsen. Amantadine has a few side effects like water retention and blotchy legs but these have not presented major challenges . I don't know what your sister takes so it is difficult to say much more. Hope this is helpful. Bob Martone [log in to unmask] http://www.samlink.com/~bmartone -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]]On Behalf Of Sharon Headley Sent: Sunday, September 16, 2001 5:38 PM To: [log in to unmask] Subject: New Member and a Nightmare I am a new subscriber the this network. I would like to briefly share my story----- My dear sister was diagnosed with young onset Parkinson's about 12 years ago. She has had excellent care-including a pallidotomy AND Deep Brain Stimulation over the years- but each operation was minimally successful, at best. She currently receives Botox injections for severe dystonia about once evry 3 months. While degenerative, things appeared "handlable" till about 3 years ago--at this time my sister began experinecing classic symptoms of psychoses-including paranoid delusions. Believe me when I say that these HORRIFIC psychological manifestations are worse than her physical symptoms. I want to share this: We have been told in no uncertain temrs that the psychoses is a side effect of the YEARsof Sinamet and related agonists over the years. This side effect does not afflict ALL Parkinson's sufferers, but it DOES happen. The problem is that the patient certainly cannot stop the Sinamet. While an antipsychotic drug helps somewhat. the psychoticsymtoms are OVERWHLEMING AND HORRIFIC-you would not believe what her mind thinks os real and of course the actions she makes based on these ddelusions. In addition, since the Parkinson's continues to progress,my sister is also showing signs of "Parkinson's dementia"-again, this does not happen to ALL PD patients, but it sdoes to some. This includes poor judgement and reasoning capabilities, dofficulty with ligical thinkging, etc. So, as you can see, the Parkinson's has not only attacked my sister physically, but psychologically as well. Our lives have been FOREVER changed, adn there appears to be no solution. My plea--Have ANY OF YOU had experience with not only the physical aspect but also the impact-as the disease has progressed- of the HORRIFIC Psychoses wrought by medication and the advancement of the disease???? MY sister, while not an immenent danger to self or others, cannot be helped in a supportive envoronment (such as assisted living, etc) without her concent and of course she refuses this help (this is part of the mental side of the illness). Guardianship CANNOT happen until she is deemed incompetent by the state-but because she is not a "danger" to self or others, she cannot be committed for help. Our family's faith, binds. and emotional stamina is almost completely broken--DOES ANYONE HAVE PERSONAL EXPERIENCE WITH THIS??????? Thank you all for listening, .........and I am eagerly awaiting your responses ---------------------------------------------------- ------------------ To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn