Dear Barbara:
 
I don't know if any of this message would be helpful to others.  It's a
little more personal than I usually want to be.  But if it helps anyone
else, that's an outcome within the goals of the network, so here goes.
 
k.
 
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Mrs. Karin M. Beros, MSO                        [log in to unmask]
International and Area Studies                  voice:  (510) 642-8542
Office of the Dean, 260 Stephens Hall           fax:    (510) 642-9466
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---------- Forwarded message ----------
Date: Sat, 8 Jul 1995 09:15:47 -0700 (PDT)
From: Karin M Beros <[log in to unmask]>
To: MRS MARIANNE E LANDERS <[log in to unmask]>
Subject: Re: Intro
 
Dear Marianne:
 
I am really sorry to hear your story, but glad you're on the PD network.
It will help you, and ultimately your sister.  Unfortunately, the
debiliting effects of PD really have a depressing effect on all family
members, for just the reasons you describe -- an active, interested
person gradually unable to do the things he used to do, or to feel his
full powers again.  There really is a period of denial, but you must try
to get your father away from this as soon as possible, because he's
losing valuable time and energy.
 
A good sense of humor helps, if you can muster it up.  My husband was
diagnosed with PD about 11 years ago, although he had been feeling
increasingly weaker with a little leg tremor for perhaps three years
before that.  In the beginning, especially after first getting on
Sinemet, we both thought he would get better and we could travel again.
Well, he never did feel better, but now we understand that we won't
travel again, that is until he is able to accept a wheelchair (no, he
can't bring himself to that yet) as a means of getting around.
 
My husband's denial was so bad that he wouldn't allow me to tell our
three sons about his PD until two years after it was diagnosed, and then
only by force, since he had had a heart attack and they were in the room
when the cardiologist was taking his medical history.  Of course they
already knew something was wrong and were only grateful it wasn't worse.
That's the key.  Everything is relative.  We could have lost him to the
heart attack so easily.  He could have had a stroke that would have left
him a vegetable.  This is really much better because in our case his
intellectual powers are intact.  That's where the humor comes from.
 
We spent the first six years slowly withdrawing from friends, refusing to
discuss our needs with family, etc.  Slowly we've turned it around, and
now enjoy what has to be considered a "normal" life.  I'm still working.
My husband is alone much of the day, but we are together for an hour and
a half in the morning and then after I'm home at 6:30 or so, and we have
the weekends.  We see our children and grandchildren.  They help us as
needed, and we see our friends again, not a lot, but as much as we can
handle.  We're always finding ways to make our activities simpler and
more satisfying.  But your father must open his mind to a new way of
living.  If you can help him to do that, he will come around, and you
will feel better about it.  You must treasure all he was, all the
adventures, all the strength, etc., but you must also find something to
treasure now, and so must he.  It helped us in a morbid kind of way to
have another friend develop PD, not someone we met through a support
group, but one of our circle who was diagnosed a few years after my
husband.  It's less isolating to have friends with whom you can discuss
symptoms, treatments, physicians, modes of accommodation.
 
I'm sorry for your situation, but you and your sister are proceeding
well.  Try to think of your father, and help him see himself this way, as
beginning a new life, perhaps with new friends, certainly with new modes
of doing things.  Try to help him isolate the things he can't give up,
whatever they are, and concentrate on finding means by which these things
or activities can be preserved.  My guess is that it's different for
every family.  I treasured our travels, and wanted to continue.  But I
have learned that my husband is still too embarrassed, too "diminished,"
too weary, to master those kinds of new experiences.  So I respond to
whatever he wants to do, and in whatever form that takes -- usually much
too slowly, incidentally, for my own frame of mind, so my accommodation
is a serious one.  Then, I find other ways of accommodating myself so I
won't be angry or too frustrated.  It works for me to take a class now
and then of something that interests me, to expand my own professional
circle of activities slightly, and so on.  Once I retire I'll probably
find other means.
 
But the bottom line is that he needs more than physical help, he also
needs emotional and friendly support to find his old self within this new
framework.  I don't think it's easy.  It took us about seven years, but
we're O.K. now, and no longer anxious and depressed in what were
confining modes of living.  When we are out, and he falls or stumbles or
freezes, I am no longer embarrassed.  I've decided that if people don't
know what PD is, it's time they learned.  More often than not I find that
people reach out a hand to help, and that they already know.
 
Well, enough.  Good luck.  It really will be alright.  It's good you can
help your sister in the way of the network because there's a lot of
interesting and useful information on the network.  She's doing an heroic
job to be looking after her father.  You should try to think about
spelling her once in a while to give her some freedom, or at least to
encourage her to retain her own identity and get her personal needs
satisfied somehow.  As for Dad, try to make him laugh once in a while.
Don't be afraid to remind him of the good old times, and demonstrate that
you treasure your reminiscences of him as a younger, stronger person.  It
may help him in the transition to know that that part of his life is
preserved in the memory of his children.  Maybe he can let go of it
himself enough to begin something new, and a new set of activities
related to the his old life.  My husband, a retired university professor,
is a great tinkerer.  His hands are not affected by PD (unless he's
"off"), but he likes to refinish furniture, repair things, etc.  These
tasks are getting as never before, and I'm proud and grateful for that.
 
Things will be better.  You'll see.
 
All best,
 
k.
 
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Mrs. Karin M. Beros, MSO                        [log in to unmask]
International and Area Studies                  voice:  (510) 642-8542
Office of the Dean, 260 Stephens Hall           fax:    (510) 642-9466
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