[cross-posted from mgh pd forum]

hi all

on 05-29-2002 10:50 AM paula wrote, in part:
>This time it isn’t going to work. For 2 years,
>I have relied upon and contributed to this forum,
>and believe completely in its potential. As the
>orgs and researchers have their problems behind
>closed doors (something tells me its not always
>peaceful with that many credentials going head to
>head -not to mention the DC scene Lord have mercy),
>we have publicly chronicled the patient view right
>here.
>At first I was upset with Greg. I thought -there
>are much bigger problems than having a congratulatory
>thread ruined. You are deserting. But I have seriously
>rethought that, and the reason I changed my mind is
>simple – I’m tired.
>I’ve been tired since I got back – seriously
fatigued. I can’t rebound. The other nite I got an
>email from Greg – gracious as always – and he said
>– “I’m tired”. I rethought after that and realized
>the damage that’s being done over and over here.
>I can’t defend it any longer ...
>Tena, I leave you to your salad recipes,
> Thelma, stop agitating – you tried consistently to
>deflate our balloons the entire time we planned our
>advocacy trip. These people are ill and you take
>advantage. Exactly who’s side are you on? Have fun
>with that question.
>Back to Tena – how old are you now anyway? How long
>till you become a woman? When your little girl grows
>up – let me know. Don’t forget to offer everyone
>some jello and brush your teeth before you go to
>bed.
>The people here are so tolerant – takes awhile to
>realize you are a sitting duck. Clognition.


funny, [not funny haha] isn't it?
i was going to respond to this yesterday
but i was too tired to do it justice
and lo and behold
today the PARKINSN listserv received another example
[albeit from a whole nother personality and in a whole nother style]
of exactly the kind of non-supportive attempt at 'deflation'
that paula mentions in her heart-felt and eloquently expresssed
frustation and disappointment and anger

parkies have been given a truly complex and demanding test

theoretically we have a condition categorised as a "movement disorder"
but as the medical evidence piles up even higher recently
as it has been piling up for years
it is more and more clear to me
that we have to learn to deal with a "mood/movement" combo plate

the early word was that
parkies are more 'susceptible' to emotions
and to 'tearing up' at the drop of a labile hat

that between 40% and 60% of us also have clinical depression
has been rarely acknowledged let alone dealt with
until recently

our brain chemistry is not only dopamine-challenged
but per recent news is also probably serotonin-challenged
which means that two, not one, of the neurotranmitters
normally produced by our own bodies have run amok

dopamine is critical for enabling normal movement
but it is also 'the feel-good' chemical,
and is associated with emotional responses to
rewards, risks, addictions ...
and serotonin levels are the main determinant for
clinical depression's strangle-hold, nay, smothering
of our ability to enjoy life and all it offers

so being a parky means
not only
exposing one's physical vulnerabilities to the world
[that is, if we are not captive
in an isolation made of our own fear and shame)
but also
learning to acknowledge emotional vulnerabilities
in a world that has brainwashed itself
into believing that emotions
(especially those pesky negative ones)
are intolerable signs of weakness
and inadmissable evidence of 'mental illness'

it's tough admitting to hurt feelings
it's even tougher once past that hurdle of acknowledgement
to entertain the idea that those same feelings may be 'bogus'
in the sense that our cognitive abilities may be impaired
due to our bio-neuro-chemical turmoil

as a movement disordered human bean
i have to deal with changes in my physical symptoms
or suffer the consequences i.e. on/off, side-effects, etc

as a mood disordered human bean
i do believe that the same principle applies

we have been given a physical and an emotional challenge
pass this one
and we get a double-degree from the universal university

everyone has to learn this stuff eventually
we've just been put into the fast-track
oops or maybe the slow-track?
stream


janet
emotions R us

ps
not to mention that the fifth primary symptom of pd after
tremor,
slowness of movement,
rigidity, and
balance problems,
is
FATIGUE

pps
the ultimate in emotional maturity and general wisdom has been described as
being able to read or hear any idea or thought expressed by another
and not be 'made' to feel any emotion 'involuntarily' as a result
unless and until we choose to

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: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0
a new voice website: http://www.geocities.com/janet313/

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