as posted at: http://groups.yahoo.com/group/newvoicenews/message/911 hi all in recent posting to my newsletter i have described a cyber-sibling parky (diagnosed at 27 - now 42) suffering from med-induced psychosis, who has been sentenced to 12 years in prison due to illegal behaviours, which i am convinced are pd-med-drug-induced-psychosis-induced. so far, i have 'anonymised' his identity, but i am lifting that veil now. in one of his last postings to the pd listserv, he said, in part: > I will never be able to forgive myself. I will not > defend myself by saying that the drugs themselves > caused this. If I had taken better care of my drug > intake it would have never happened. That shall be > my penance. I deal with it everyday. Wondering what > people think of me. Whether there is any trust. That > is what I and others have been dealt. That is why we > must keep the pressure on! ... So other people will > not have to deal with a psychotic PWP. So PWP's can > feel whole again. The physical problems are hard enough > to deal with. The mental health of a PWP is a whole > other ballgame. We may not always show our symptoms > but we always feel them. We shouldn't keep it a secret. > It is time to reckon with this and other disease while > there is time to help so many that have suffered so > long. Telling it like it is! ... following is a copy of the christmas card i have just sent to greg in prison if anyone else wants to send a word or two to greg (via e-mail or s-mail) please forward it to me and i forward to him i am creating a website to tell his story, right up there beside joe bruckbauer's story, there, but for grace, go any one of us janet ----------------------------------------------------------- 10 december 2002 hi greg i will be thinking of you over the holidays and wishing you health and joy. i've enclosed copies of messages i've sent to the pd list and to my newsletter in re your circumstances. i hope you don't mind. i would never want to do anything that you were uncomfortable with. i just want you to know what i think and how i feel about your situation. i have talked to karen and ivan about you and we are all concerned and want to help you in any way we can. "there, but for grace, go i". if it is okay with you, i would like to keep in touch by writing you again, no pressure on you to write back. but just send me a grunt or two to let me know that you have received this: one grunt = "got it, don't bug me" two grunts = "got it, okay to send more" with much love janet ------------------------------------------------------------------ 2002/12/07 pd meds mismanagement - responsibility? (part 3) ------------------------------------------------------------------ hi all what if pd meds (i.e levodopa) are mis-prescribed? (i.e. over-prescribed) what if the early warning sign of too much dopamine in the brain aka dyskinesia is ignored or downplayed? what if pd brain surgery aka pallidotomy destroys those brain cells causing the movements relating to the dyskinesia? has the pallidotomy improved the pd symptoms? or has it destroyed the primary early indicator of dopaminergic toxicity? what if a second pallidotomy is undergone i.e. now bi-lateral effect i.e. both sides of the body/brain ? what if dopaminergic (drug-induced) psychosis results? what if unprecedented bizarre behaviour results? if not enough dopamine in the brain = parkinson's disease and if too much dopamine in the brain = schizophrenia duh???? what if due to pd's chronic incurable and degenerative nature such prescribing and presentation and perpetration and operation goes unchecked for years? what if the symptoms i.e. rigidity and sweating, of (fatal) neuroleptic malignant syndrome develop and are mis-interpreted as psychiatric-related and not parkinsonian-drug-related? what if the pertinent parky has no advocate? how can the pertinent parky self-advocate if disabled by drug-induced-psychosis? who else is there to speak for the pertinent parky? what do the pd orgs say about these questions? what do the neurologic medico orgs say about these questions? what do the psychiatric medico orgs say about these questions? what do the journalists reporting on the resulting court cases say? how many parkies are institutionalized due to such drug induced psychosis? how many have to die before we figure this out? i will not forget joe bruckbauer first, do no harm janet ------------------------------------------------------------------ 2002/12/07 Re: pd meds mismanagement - responsibility? (part 3) ------------------------------------------------------------------ hi all someone wrote: > That's a lot of "what if's?" - janet! > "What if" we didn't have people like you making us > think about what might potentially be a big conspiracy > against those with PD??? and then someone else wrote: > and what if > one flew over the cuckoo's nest > ? > tragedy is a terrible thing > why doesn't somebody DO something > ? i doubt there is any conspiracy as such i am relatively certain that we are still dealing with a high level of ignorance about pd in all areas of our society - medical, legal, etc. the other end of the 'overdose' spectrum is the news report that only 44% of parkies in nursing homes in the usa actually get any pd meds what to do? i guess just keep plugging on in our own ways to be educated ourselves and to educate others in re the parkie i described, when he had his first pallidotomy about 5 years ago, he described (pre-op) dyskinesia strong enough to knock a can of soda out of a colleague's hand at work. i can now see that as a big warning sign of levodopa overdose and might have suggested cutting back on the meds before going to the extreme of having surgery but but i didn't know enough then and i am still learning now as are we all. what to DO now? i have contacted the reporter involved to see if there will be any interest in more followup in the meantime there he sits in jail looking at twelve years still overmedicated in my humble opinion of course janet ------------------------------------------------------------------ 2002/12/08 Re: pd meds mismanagement - responsibility? (part 4) ------------------------------------------------------------------ hi all At 22:34 2002/12/07 -0500, i wrote, in part: >in re the parkie i described, >when he had his first pallidotomy about 5 years ago, >he described (pre-op) dyskinesia strong enough to >knock a can of soda out of a colleague's hand at work. >i can now see that as a big warning sign of levodopa >overdose and might have suggested >cutting back on the meds before going to the extreme >of having surgery >but >but i didn't know enough then >and i am still learning now >as are we all ... i went back to re-read his detailed description of how he arrived at the decision to have a pallidotomy i may have had the details of the soda story a tad askew (the original included providing umbrellas to co-workers) but the essence to me at least of factors indicating levodopa overdose speak even louder than i remembered paranoia hallucination delusion depression withdrawal self-medication errors in judgement are all there in great big helpings along with the muddling of pd symptoms with pd med side effects in his description of what the miracle of the pallidotomy was (hopefully) going to 'fix' in re the criminal charges against him now three past incidents of attempted sexual assault are described in the oldest incident a weapon and personal injury to the victim are involved a horrific event and lasting nightmare in memory from all angles - no denial there the two later incidents involved individuals whom he knew and who knew him; threats were made but no assaults or injuries took place in the details of the news report (posted here last month) i sense a tormented soul yelping for help in the only way he could figure out to get attention from those "in authority" his many actions of admission and self-revelation as reported run counter to the general concpt of a "hardened repeat offender with deliberate criminal intent" (but that's only my amateur shrinkological opinion) this is a man who has devoted his energies to furthering the pd awareness cause in a generous selfless way until getting caught up in and dragged down by poor (and maybe even incompetent) medical navigation of his brain chemistry management roller coaster which is the daily and hourly reality of life with parkinson's disease listen: >... I began to contemplate pallidotomy in January 1997. >I had just returned from a vacation in Australia >with my friends JC and BB. While in the "land down >under", I had experienced hallucinations and paranoia, >not for the first time in my long struggle with >Parkinson's disease and its medications, but to the >strongest degree yet. >This trip was supposed to have been a once-in-a-lifetime >opportunity; a time for mirth and stories and friends >enjoying each other's company; not a time for fearing >that your friend has some sort of reptile in his bed. >But I was sure it was there. I sat in a chair in the >middle of the room with my eyes fixed on the protrusion >moving under JC's blanket. Both BB and JC tried to >convince me that there was no reptile. They pulled back >the covers to show me that there was nothing underneath. >However, my paranoia was so strong, I remained in that >chair for the rest of the night, not daring to leave the >room, and also fearing for Joe's life. >It had been a long day. We had spent four hours flying >from Melbourne to Alice Springs and another five hours >driving from Alice Springs to Ayers Rock. BB had >painted a grand picture for us with his description >of the spectacular beauty of this tourist destination, >but it was nothing but a huge disappointment to JC >and me. >BB's driving at excessive speeds, along with a dwindling >fuel supply (and no gas stations in sight), combined with >the potential prospect of having to survive the desert's >furnace-like heat, caused me a great deal of stress. The >sight of animal carcasses strewn along the roadside did >nothing to set my mind at ease. >We had vehemently warned BB that I and my Parkinson's >symptoms could be in serious trouble if the car ran out >of gas in the middle of the desert. Fear of freezing >(becoming unable to move a muscle) in the middle of an >outback summer is not a play on words. However, in my >zeal to make sure that this did not happen, I had >inadvertently over-medicated myself. >As it turned out, we reached out destination safely, but >the combination of the fatigue, the stress, and the >over-medication brought on my most extreme session of >paranoia and hallucinations yet. Later in the trip, >I vowed to research every possible way of improving >my quality of life and minimize any possible recurrence >of this nightmare. >As soon as we returned stateside, I contacted my neurologist, >Dr. K. After a lengthy discussion, he agreed to set up a consultation with Dr. R, a neurosurgeon at HD Hospital, >with whom Dr. K had trained. He recommended him very highly. >My research on the neurosurgeon and the hospital turned >up the words "impeccable reputation and credentials" again >and again ... i have described myself as his friend and still do even more so now in retrospect if asked i might have ventured the suggestion of obtaining second and third opinions and evaluations before deciding on surgery (and consulting with a neurosurgeon does not count!) last month was his second court appearance; his previous conviction incurred a lessening of the sentence due to his argument that the pd meds had contributed to his behaviour; that argument was not recognised this time was his behaviour and medication regimen not evaluated and monitored on an ongoing basis after that appearance? imho drug-induced-psychosis is not valid grounds for looney-bin incarceration and psychosis-induced-behaviour is not valid grounds for hoose-gow incarceration my pal seems to have slipped through the cracks on both counts just because he has pd and needs appropriate medical care janet ------------------------------------------------------------------ 2002/12/08 Re: pd meds mismanagement - responsibility? (part 4) PS ------------------------------------------------------------------ hi all ... and one more thing: i said earlier today: >imho >drug-induced-psychosis is not valid grounds >for looney-bin incarceration >and >psychosis-induced-behaviour is not valid grounds >for hoose-gow incarceration psychosis-induced-sexual-aggressive behaviour is not valid grounds for the shame-and-blame-game we are dealing with dopamine here - the "feel good" neurotransmitter: associated with addictive behaviour of all kinds; associated with risk taking and reward seeking behaviours too; overdose of which has clearly been associated with hypersexuality for several decades; including but not restricted to levodopa-dose-dependent zoophilia; and which med in and of itself has been found to be psychologically addictive in some patients; which facts in the medical literature all beg the question how can one be expected to self-monitor the intake of a medication to which one is addicted; when one's cognitive ability and rational thought are impaired by chronic overmedication of self-same medication for over five years maybe my parkie bro feels safer in jail than out maybe with good reason but for how long? janet ------------------------------------------------------------------ janet paterson: an akinetic rigid subtype, albeit primarily perky, parky pd: 55-41-37 cd: 55-44-43 tel: 613-256-8340 email: [log in to unmask] smail: 301-375 Country Street, Almonte, Ontario, Canada, K0A 1A0 a new voice website: http://www.geocities.com/janet313/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn