[originally posted 98-02-02]

hi claudia

you wrote:
>I couldn't sleep so, of course I headed straight to the computer to see
>what new messages I had.  Reading the posts is a big part of my day.

one of the most important aspects of this list
is the sharing of joy and pain here
pd has melded us into a true
albeit virtual
family

>I read the one from the gentleman who skied with his wife.
>I could feel the love in that letter and I was so happy for them.

i saw their love as bitter-sweet
since it is tinged with the sadness of their perceived loss
kahlil gibran said something about joy and pain
being opposite sides of the same coin
experiencing both makes us richer

>But, I have to admit that I was a little jealous, too.
>This is a hard e-mail to write because it's so personal and so painful.
>My "caregiver" is my spouse.  We have no relatives where we
>live (southern California)  The closest ones are Kansas City or Florida
>My husband is a good man but he seems to be totally lacking in
>sensitivity.  He provides well for me and provides all the practical
>necessities.  But his way of dealing with my problem is to stay at the
>office very late at night, so it is bedtime when he gets home, often I'm
>already in bed.

the way your husband is 'dealing' with the problem
seems to me to be avoidance and denial
which are generally based in fear;
i know it well

stereotypically
the male of our species
likes to go for the active 'quick-fix' solution to problems
an 'insoluble' problem requires a lot of work and attention

>I asked him this weekend why he doesn't ever talk to me
>about PD.  He said "I know enough about PD--it's a
>progressive disease, your life's going downhill and you'll
>die..just accept it and get on with life".

he says he knows 'enough' about pd
in other words
all he wants to know
this reverberates with more of the same fear and avoidance

you have both used terms like
'my problem'  'your life's going downhill'  'you'll die'
certainly the disease is yours, claudia
but it can be shared by both marriage partners
for better or worse
in sickness and in health
this is one of the big tests

in 'facing the facts' of your impending doom
it seems to me that your husband
is expressing fear of his own
inevitable death

that is something we all have to work through
we were all born in order to die
"life is a terminal disease"
our time here is limited
not infinite
i think the key is to figure out
what the heck we are supposed to be doing while we're here

i truly feel that we are in this earthly university
to learn as much as we can
in order to love as much as we can

>I tried to tell him how much it meant to me
>to be able to talk to the one I love about it
>but it fell on deaf ears.

his own fears and denial have blocked his ears
it's important that you realize that
his response is not a rejection of you
but a reflection of his own pain

>I try really hard to stay positive and most of the time I am,
>but today it feels like everything bad is falling on my shoulders.
>The dr. has told me it's time to retire.

a scarey thought, if you let it be so
but he could be wrong; he's human, too

>I'm having so much trouble with my balance
>that I now have to use a cane.  Up till now no one could look
>at me and see that anything was wrong.  Now my "secret" is out.
>I'm not really vain, but it just makes PD
>so much more "real" to me.

...like saying previously unspoken thoughts out loud
they take on an added dimension and impact

>This seems to be going so fast--I was only diagnosed 5 mo. ago!
>I had a job that I loved and was good at--and now
>I don't think I could go thru a day there..  I was the
>Postmaster of my city and had 60 employees.  I took great
>pride in my job and worked darn hard to get where I was.

my impression is
that your symptoms are progressing awfully quickly too

you say you are on lots of meds
i may have suggested this before
but i think it might be important/interesting/revealing
to pare down your meds to the bare bone
and take a good hard look at your symptoms
and how they are affected by your meds
you could be suffering from some unknown interactions

have you told us your med schedule in detail?
have you seen a movement disorder specialist?
or another neuro who specializes in parkies?

i am convinced that your situation could be greatly improved
we have to learn to be our own advocates in dealing with pd
we cannot rely on anyone else

i challenge you to apply the same grit and determination
you have shown in your previous job
to your 'new job' - pd
you have access to the most knowledgeable people
and the most comprehensive data base in the world here

>I hope this doesn't sound like total whining,
>but so many times I have heard members say "we're there for you".

we are, and i am, claudia

i don't think you are whining
you are opening up your deepest feelings to us
and i, for one, feel honoured to have been on the receiving end

>I'm a proud person who never
>asks for help.  But I'm asking now.

that took a lot of courage

>Surely I can't be the only one of the 1600 of you
>who don't have supportive caregivers,
>How do you manage the emotional aspect of it?
>Any of you with loving caregivers have any ideas.

i have lived alone with pd for 9 years
so i have no 'caregiver' as such
but i have been learning
to be one
to me

>I have joined a support group and they are wonderful,
>but it is about 50 mi away so its not practical to try
>to spend time with them in between meetings.
>I have always been so busy with my job that I never really
>had time to develop friendships here
>and we have only lived in California for 7 years.

i found that pd forced me to look at my priorities pretty hard
and now i am in the process of making changes
to reflect those priorities

re-evaluating can be scarey
or it can be exciting
it is our choice

>I'm sorry to sound like a whiner,
>but it all just feels like it is crashing down
>on my  head right now and
>I'm feeling a little sorry for myself.
>Something I don't do often..

your feelings have caused
you to admit some painful things
and reach out to your cyber family
i cannot fault those emotions one whit

>Maybe this is just part of the depression
>that comes with PD

anger / denial / bargaining / acceptance
are the stages we all go through
in dealing with any
perceived loss

>and I'm taking so much medicine
>that that could be contributing to it too

i'm not a medico of any kind
but i'm pretty sure that you are right in this

>--and if none of those work I guess
>I could always "Blame it on the Bosanova".

or howzabout on san andreas?


with much love from your syber sys

janet

janet paterson
50-9 / sinemet-selegiline-prozac
almonte-ontario-canada / [log in to unmask]