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2001/12/07 The CANCAN Chart (Control/AcceptaNCe/AwareNess)
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hi all
one of the most powerful influences on our day to day outlook
is the concept of "control"
if we feel we have no "control" over our lives
we can become discouraged despondent despairing
put that together with a parky brain
and its tendency to the negative thought distortions of clinical
depression
and what do you get?
in my view, one of the biggest hurdles we face as parkies
is "acceptance" of our situation
not just the one-time diagnosis
but the ongoing stages of accepting the changes that pd brings
it is very slowly progressive and degenerative
so it can seem that there is constant loss
of abilities of freedom of identity
to struggle with
put that together with the daily on/off syndrome
which a mid- to long-term parky faces
and what do you get?
which other "disability" or "chronic condition"
turns its symptoms off and on like a lightswitch 10 times a day?
diabetes?
glaucoma?
arthritis?
quadriplegia?
multiple sclerosis?
which blind person wouldn't welcome the possibility of near-normal sight
even just once a day
even just for a few minutes?
is the on/off syndrome a daily or hourly blessing
or a cruel trick?
is part of the trickery
the enabling of denial (non-"acceptance") in us, viz:
"oh, i'm not really that bad - not really "disabled"
i'll be okay in an hour - or a minute - or sometime soon"
put that together with the reluctance to show our "bad" times in public
and what do you get?
although "awareness" of pd has been improving recently
the general public still know little real facts about it
(viz: a report today in USA Today confusing PD with CBGD)
and that ignorance permeates our society at all levels
(medical scientifical clerical laical etc.)
so what have we got so far?
parkies feeling a lack of personal "control" over their lives
parkies having difficulty "accepting" their condition
lack of public "awareness" about pd
how can we feel more powerful than we do now?
we as parkies
have to become our own advocates and ambassadors
in the struggle to understanding and enlightenment in us and in others
the neurons in our brains are miraculous things
as we learn they re-wire themselves
writing something down is more effective (to our brain circuitry)
than just talking about it;
call me a witness:
i've been "doing the CANCAN" for the past few days and i love it!
i talk about pd to virtually everyone i encounter
including several who "should" know more about it than they do
viz: some of the community care workers i've met recently
i've tried explaining the on/off syndrome to them verbally
with some degree of success
but have had much better results
with a chart i've developed for myself
when they see my daily record in black and white
the light of understanding begins to glow
and then when they see it in colour
(i just used highlighters for the colour coding)
the "aha!" flash hits them!
take a look, try it out, and tell me what you think!
it's accessible and linked on the front page of my website
under "what's new?"
janet
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janet paterson: an akinetic rigid subtype, albeit 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: http://www.geocities.com/janet313/
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