hi all
i have spent most of the day rootling around in the archives
this one seems to want to speak up once more...
jmp
052855
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Post: 052855
Date: 1998/12/01
Subj: Getting REAL PD Facts / sugar coating / visibility
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hi laurie and john,
> On 1998/12/01, john wrote:
>> On 1998/11/30, laurie wrote:
>> But if he had ONLY been shown the worst thing that
>> could happen to him as a person with MS I am afraid
>> that he might have ended it all right there.
> Exactly my point.
>> It is always good to know the most and the least.
>> That is NOT sugar coating, THAT is the truth.
> Indeed. AND it is of course vital that we have all the
> information, because that empowers us! It's only when
> we have all the facts that we can make good decisions
> about the future.
when i was diagnosed 10 years ago
i knew zilch about pd
[john - that's canadian for nada]
due to that ignorance
my reaction to the words of the diagnosis
was sheer terror
i had images of total physical helplessness
being a prisoner inside my body
i told my sister that night
that when i got to the point where i couldn't 'look after myself'
i would commit suicide
looking back on those thoughts and feelings now
is like seeing me in an scratchy old 'silent movie'
ten years later
my life has changed radically
only part of that is due to my health circumstances
most of it is because my priorities have changed radically
they changed because
i realized i had been given a 'wake-up call'
my then neuro didn't try to sugar-coat anything
but he did describe the med options and the slow progress
and refuted the idea that i had been given an instant death sentence
so what was i to do?
worry myself into a self-constructed prison of fear
over what might happen to me
in a year?
in ten years?
in thirty years?
which one? or all of the above?
i could be hit by a truck tomorrow
and what good would all that worry and fear about pd
[or about anything else]
have done me?
none at all
and what's worse
it would have soured me to
whatever gifts life had offered me
in the interim
i don't advocate hiding one's head in the sand
that's deliberate ignorance
and is a form of evil
[imho]
i do advocate getting all the information possible
before coming to any conclusions
but i cannot predict the future
that's been made pretty clear to me over the past 20 years
i now admit freely
that i can barely figure out what's likely to happen next month
> Another point that I wanted to make by my comment is that
> it is very important to make sure that there are some kind
> of protective net to catch the newly diagnosed person. Some
> way to catch that person before (s)he falls into that first
> depression, or when (s)he just has reached it.
receiving news
about a chronic illness
is something that has to be grieved
it has to be worked through as part of the acceptance process
maybe that terror that i felt
was a catalyst to my later enlightenment?
the lack of knowledge and sensitivity [ = fear?] displayed by some
medicos
is only a reflection of the lack of pd knowledge in society
which is partly a reflection of our parkie forebears'
'hiding in the closet' of shame and embarassment
which may have been a reflection of the times
there are a whole lot of things
being talked about in public these days
that were 'hushed up' just ten and twenty years ago
when i was diagnosed 10 years ago
selegiline was the greatest thing since sliced bread
comt inhibitors and other new meds didn't exist
surgery was extremely rare
the rate of progress in research and options
seems to be increasing exponentially;
i can't help myself,
i feel hopeful about pd's medical future
> That is a completely different question, though: How shall
> we make the neuros realize that a newly diagnosed person
> needs somebody to talk to, who can give support? And, even
> if the doctor understands that, he often doesn't inform the
> patient about support groups.
i'm not sure if this is a completely different question
i think the general societal ignorance about pd
is implicated here
which is all
part and parcel of our
complaining about being 'invisible'
i concur heartily with dennis' idea of 'show and tell'
bring it all out into the open
the good and the bad
the reality
which is exactly what has just started to happen
in the past few years / months / days
back to my 'silent movie' analogy:
learning about pd in general
and finding this forum in particular
were key components of the awe-inspiring jaw-dropping upgrade
to full-blazing-panoramic-technicolour-surround-sound extravaganza
that i now find myself in
action!
your cyber-sib
janet
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janet paterson
53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
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