HI Janet,

Thanks for your welcome back and certainly I am not regretting it.  I
have found a lot of friends here who I missed during my 2 week absence.
Your perspective is helpful.  I cannot make the cognitive shift that you
make to feel that PD is a gift.  I can at times appreciate the
advantages like my pending early retirement that is relatively
financially secure with my disability insurance income,  but no matter
how I look at it the loss of my practice, and to a large extent my
personal identity by far outweighs that. I don't think my problem is
societal expectations.  The issue is not as much what I "should do"  but
rather what I enjoyed doing and got a great deal of satisfaction from.
The fact that I am no longer able to work with patients is a loss for me
that has to be mourned.

I am not angry about having PD so much as- like George Andes- frustrated
by the ongoing loss of abilities I once had.  I had polio as a kid and
always walked with a substantial limp.  Yet I never viewed myself as
disabled!  I didn't go through the repeated losses that I have with PD.
At 9 years old I lost substantial function but from that time on I was
gaining.  The denial was usually adaptive and led to "Progress".  That
mechanism doesn't work for me as my independence continually is eroded.
That has little to do with "shoulds" but instead loss.

Regarding the question of the effect this is having on my wife, we talk
openly about our feelings to each other so I am projecting only a small
part.  She goes through the pain of loss of parts of me function by
function.  She doesn't love me any less but she goes through the pain of
watching someone she loves deteriorating.  While she is able to take
over much of what I used to do, it is difficult.  In addition,  I am not
as responsive.  PD has flattened my visible affect so that she has
difficulty reading the non-verbal cues of what I am feeling.  While, if
I was a psychoanalyst that might have been a gift, in normal human
relations it is a disaster.  I have heard mourning as the loss of the
dream as to what might have been.  The chances of us doing in our
retirement years anything close to what we would have liked to do are
small.

Yes,  we do have a lot of things we can do and the picture is far from
totally bleak,  but the loss is there and needs to be mourned by both of
us as part of the process of living with PD rather than dying from it.

Thanks for stimulating me to think through my ideas and to put them in
writing.

Charlie

> welcome back!
>
> your report was interesting, and appreciated.
> do keep us advised of your progress
>
> >I think it is important that we bitch a little (or a lot) once in a
> >while here. I have written here about healthy and unhealthy denial
> and
> >while it is not productive to wallow in our misery there are a lot of
> >times that I feel miserable and damn it, I have a right to feel sorry
> >for myself-
>
> i'm intrigued by this
>
> for some weird reason, i can't generate any resentment or anger
> over the fact that i have pd, and i know i'm no saint!
>
> my initial reaction was certainly terror and panic at diagnosis
> but that reaction was solely based on ignorance
> which has been dealt a terminal blow by this list
>
> >when I am unable to go some place on my own
> >when I wake up at 4 AM with muscle cramps
> >When  I watch the woman I love burdened by my lack of mobility
>
> forgive me, charlie,
> i'm really not trying to trespass on anyone's area of expertise
> but i have to ask you
> do the above comments reflect your feelings that:
> you 'should' be able to ...
> you 'shouldn't' have to ....
> and
> she's bound to feel ....
> and i 'shouldn't' ...?
> are you still struggling with acceptance?
> do you think acceptance might be harder for a man than a woman
> due to our societal brain/washing/staining in re
> yardsticks of worth/success/strength?
>
> how does my talking about my seeing my diagnosis of pd
> as a possible 'gift' strike you?
> loony?
> saintly?
> bizarre?
>
> here is a little christmas tale that illustrates
> one occasion of a 'light' going on in my head in re acceptance:
>
> ------------------------------------------------
> with my designer background
> i've always been a pretty picky present wrapper
> no visible scotch tape, patterned paper matching
> colour coordination to die for
>
> last christmas my sister and i were behind schedule as usual
> but this was really behind!
> it was christmas eve - and i was still wrapping presents
>
> i was indulging in a drink or two which didn't help with the drug
> kick-in
> but i was also into the dreaded 'hormone freeze'
> and i still had 6 presents to wrap
>
> my sister was keeping me company while i worked
> but had her back to me, having sworn under oath not to peek,
> while i struggled to cope with paper and tape and ribbon etc.
>
> one package took half an hour to complete
> i then ahuffled over to the tree
> be-e-en-n-t down, groaning like i was 149 instead of 49
> and attempted to position the treasure artistically
>
> suddenly, reality hit me
> luckily the shops here here are pretty liberal with inner tissue paper
> and outer decorative boxes and pretty gold elastic ties
> so
> wrapping the next package consisted of:
> stuff it in the box,
> slap some tissue on it,
> mash the box lid down on the sucker,
> snap the damn elastic on it,
> and throw it at the damn tree
> now THAT's wrapped!!!
>
> we laughed and laughed and laughed
> so much for pride
> ------------------------------------------------
>
> for whatever it's worth...
> [i hope you're not regretting coming back!!]
>
> with love to you and yours
>
> your syber-sis
>
> janet
>
> [log in to unmask]

--

CHARLES T. MEYER, M.D.
Middleton, WI
[log in to unmask]