hi all

At 09:05 1999/05/20 -0400, marilyn wrote, in part:
>...It's been 6 weeks since I've really come to grips with Dad's
>situation. He's had PD for 2 years but does not talk about it, discuss
>it, ask questions on it.  Some of this is good, as one does not give
>in to things, but again, there needs to be balance, to share pitfalls
>as well as triumphs with ones children...

you both need to come to grips with it
his life has been changed
no denying that

it can be hidden for awhile
it can be controlled for awhile
but sooner or later it will demand acknowledgment

denial is caused by fear
fear is caused by ignorance
ignorance is caused by lack of knowledge
knowledge is power

that's part of the answer
in my humble opinion

sharing
negative emotions
is the other tricky part
which we have all been 'brain-stained' into
encouraging and expecting women to 'indulge' in
and
discouraging and shaming men from 'indulging' in

emotions are where we live
where we learn to live
if we dare

your father's diagnosis
is naturally perceived by both of you as a loss
which must be grieved before moving on with the rest of your lives

grief insists on manifesting itself
it cannot be denied

we need to go through five stages
without getting stuck anywhere along the route
denial, bargaining, anger, depression, finally, acceptance

acceptance is not 'giving in to things'
acceptance is not 'rolling over and playing dead'
acceptance is acknowledging and taking up the gauntlet thrown down

the gauntlet is 'given' as a challenge
to learn from
to grow with

it ain't easy
it's bloody hard sometimes
but to 'know' pain is also to 'know' joy

>So it was not until my visit with him last month that I saw
>and finally started to understand what was going on with him,
>came home and started researching, asking questions....

good!
i have a 'pd for newbies' page on my website
[all pages are in their toddler stages at the moment]
where i recommend basic reading for newly diagnosed parkies

>And I am determined to help him, to help him in ways I know how
>and realize that they must be matched with what he would want
>and accept and allow...

yep
you can lead a horse to water...

>He also says the medication does not seem to make a difference,
>he thinks he is improving but he is not sure. (I'm not sure
>either.) He has not been told about the timing, nor about protein
>influence, etc....

the sensitivity to ingested dopamine i.e. sinemet
generally doesn't manifest for a few years

> Should a specialist be a neurologist?

absolutely!
and not only that
but someone who specializes in movement disorders
if not parkinson's alone

there is still too much ignorance out there about treating pd
among the general public and among the medical professions

> AND a gerontologist?
>(if yes to a gerontologist, what advantage does that bring?)

i don't know...
in my view it might just complicate things [see above comment]

>I would fly down there to go with him to any evaluations and help
>him get started with anything he needs to do.  Do you think this
>this help?

having a second person at any medical visit is terribly important
it's also critical to go prepared with written questions
and to take the time during the visit to ensure
that all answers are understood

any medico who doesn't approve of such an approach
needs to go back to medico school
in my humble opinion


your dad's cyber-sibling

janet

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janet paterson   52 now 41 dx 37 onset  [log in to unmask]
613-256-8340   PO Box 171  Almonte  Ontario  K0A 1A0  Canada
a  new  voice  <http://www.geocities.com/SoHo/Village/6263/>
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