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

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2002/12/07 pd meds mismanagement - responsibility? (part 3)
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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

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2002/12/07 Re: pd meds mismanagement - responsibility? (part 3)
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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

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2002/12/08 Re: pd meds mismanagement - responsibility? (part 4)
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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

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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

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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/

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