newbies / tell me more / to know or not to know / reprise

[janet paterson <janet313@xxxxxxxxxxx>]

hi all

echoes of songs already sung

i was scared to death before my diagnosis
and kept my head in the sand for nigh-on four years

and then i was scared to death by my diagnosis
due to my own ignorance
[which is not to say i was 'to blame' for being pd-ignorant at the time]

none of us has a crystal ball license
not us
not even our medicos

each one of us has a unique story of how we cope with what we have
we all are
where we have been

i stopped 'working' full time two years ago
and am now on a disability pension
and probably do just as much 'work' in 24 hours as i ever did!
and this is year 13 or 14 since first noticing symptoms

the biggest problem facing parkies
in my humble opinion
is awareness

pd has been hidden away in the closet for so long
due to shame and fear about 'showing' symptoms
that there is ignorance on all fronts

ignorance is not bliss
in re pd
it can be isolating
it can be disheartening
it can even be fatal

in unlocking the troubles of dealing with pd
the two keys are
EDUCATION and TITRATION

learn as much as you can about pd
knowledge = power
ignorance = fear

the most educated 'parkie' or 'person with parkinson's'
likely will be the oldest living parkie
unless i get hit by a truck

read:

the 'psychosocial' article
<>

the 'algorithm for managing parkinson's disease'
<>

the 'young parkinson's handbook'
<>

joe's story
<>

jim finn's diary
<>

during my four years of pien list membership
i have learned a ton
i have laughed
i have cried
i have rejoiced
i have despaired

at night, alone in our thoughts, is when the gremlins come out
which is understandable
we've had one heck of a shock with our diagnosis

"chronic", "progressive", "incurable", "degenerative"...
words to strike fear in the heart...
but, heck, add "sexually transmitted"
and we have a description of
life

with any perceived loss
we have to take the time to grieve it
which is why i recommend the 'psychosocial' article above

our lives have changed, no getting around it
but change is what life is

if we can learn to look at these crisis points
as challenges to be learned from
and not
as punishments to resent or to fear
we will become all the richer

in my view
i have 'lost' nothing since my diagnosis
i have only gained rich rewards and blessings

and being able to 'talk' with you is one of them


janet

janet paterson
52 now / 41 dx / 37 onset
e-mail - janet313@xxxxxxxxxxx
web-site -