Janet,

I'm so glad to see your posts again.  I hope your move went smoothly and that
you are well and happy.

I also want to thank you for your kind and, as always, wise and thoughtful
response.  It is such a comforting feeling to know that although I haven't
met any of the listmembers I still feel as if you and the others are my
friends.

Your words have given me a new perspective when thinking about my husband.  I
know he is afraid.  He is convinced that I am going to die and I think he
wants to emotionally distance himself from that so he won't be so hurt by
it.  I've told him that I will likely outlive him, but he is convinced he's
right.

You were right on target when you say men want to fix things, not emote about
them.  He is a retired Air Force officer who has lived a no-nonsense, let's
get this thing fixed and get on with it kind of a guy.  And he can't fix me.

I also think there is some disappointment and "why me" feelings on his part.
This is a second marriage for both of us.  In June we will have been married
8 years.  PD was not something he was counting on.  We have both saved and
prepared well for retirement.  It was supposed to be "fun" for both of us.  I
try to tell him I'm tough and we can still do most of the things we wanted to
do.

Hopefully in time he will better understand what PD really is.

I think I will do some self-adjusting of my meds and see what happens.

Well, Cyber-Sis, thank you again and it is wonderful to be part of the
family!

Much love,

Claudia



[log in to unmask] wrote:

> 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 / [log in to unmask]