...Marilyn.  When I found this group of people, I knew I had found a source
of honest, and informed caring individuals.  Although I am a relatively new
member, I am constantly moved by the determination and committment the
people who contribute to this service have towards each other and towards
finding safer, saner, and more effective ways to deal with this disease.
    Regarding your husband, and your deep concern for his welfare.  One of
the first things you learn about this uninvited guest in our bodies is how
specifically unique it is  to each of its "hosts".  We can only report on
our own particular experiences. Whether or not these tales correspond to
similar occurences in others is purely a matter of chance.  This applies to
medication, to the strength of it, to the combination in which it is given,
and to its effective duration.  Different for everybody, I'm sorry to say.
    The single most important piece of advice I've been given (age 51,
diagnosed April 1996) is that my attitude is crucial to my own experience of
this thing.  I picked up Norman Cousins' book "Anatomy of an Illness".
Although it was written in 1979, it has much to teach (me) in the 1990's.
For example, the feeling I get from your phrasing is that you are more or
less resigned to dementia accompanying Parkinson's.  This is not my
understanding.  From my research the % of  PD patients who may develop
dementia is exactly the same % of people without PD who develop dementia.
In other words, PD is not the determining factor in the development of
dementia.  (I am willing to be corrected on this if I am wrong.)
    So I think we really have to look hard at what we tell ourselves about
this thing, the development of the symptoms, the overall prognosis.  Self
affirmations, focusing on the positive, refusing to accept some doctor's
prediction if it sounds limiting and if it denies the innate regenerative
power of the body.
    My personal choice has been to study and research alternate healing
principles as well as the standard traditional ones.  As your husband's
primary care giver, you are a fundamental part of the development of his
attitude.  Norman Cousins says to smile often, focus on laughter, find the
strand of the positive, the optimistic, the assurance of health.  Even if
you think this is silly and "unrealistic", it certainly beats the
alternative which is to reinforce the negative, the fearful and the
sorrowful.  If those emotions have a depressing effect on the immune system
(and studies have shown that they in fact do) then the cheerful, the up
lifting, the joyful may very well affect the strengthening of the immune
system and the restorative healing power of the body.
What have we got to lose?
    And, of course, some of your husband's depression might be coming from
his very real grief over what may seem like the loss of his future, his
dreams and plans, not to mention his health.  You, also, have some grieving
to do in that regard too.  Don't be afraid of it.  Let it express itself.
It is absolutely unfair that this has happened to you both.  Don't be afraid
to feel your own pain and anger.  Sometimes it is very helpful to do this
with a grief counsellor, together, where even your guilt or his shame may be
expressed safely.
    (As an aside, during my two year struggle with this beast, I have found
only one person who even suggested that the "shame" I felt was in any way
normal.  By accepting that I felt this way, that I needed to apologise to my
husband etc, for the beast that "I brought into our family" was I able to
let it go, to accept it as a stage of the acceptance process - for me- and
nothing more.)
    To the other list members: I have a friend in CA who is a fire fighter.
He has worked for a number of years fighting forest fires.  He has been
living with PD for about 2 or 3 yrs.  Recently he has felt the need to
contact other fire fighters (or "flame throwers" as he calls them) who may
have PD in order to 1. make their acquaintance and 2. gather information
from them on how they are coping with their PD.  He would like to put these
stories together into a book.  If anyone has a name or email address of a
fire fighter with PD,  please send it to me and I'll pass it along to him.
    Please write again Marilyn.  There are others in this group who can give
you much more substantial and factual information than I can.  My personal
despair and struggle has centered around the emotional stages of acceptance.
I'm doing a lot better now than ever I was before.  I still hate this thing.
But it's not the end of my world.
-----Original Message-----
From: Marilyn Rudow <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Friday, June 19, 1998 7:47 PM
Subject: New member


>Hello, everyone--I just joined this group today, and am thankful I found
you.
>My husband was diagnosed with Parkinsonism and depression three years ago.
>He never had a tremor, or shook at all.  His walking was slow(shuffling),
and
>his demeanor was that of someone quite depressed.(This from the doctors).
>
>Until about a year ago, he was functioning pretty well on Sinemet (25/100)
and
>Effexor.  I guess they started losing potency about that time, and he was
>treated by the psychiatrist and neurologist, trying to determine what he
>needed.
>
>To make a long story short, the neurologist tried four new drugs: Mirapex,
>Requip,
>Permax and Tasmar, none of which did him any good.  I asked to up his dose
of
>Sinemet, and was told to go ahead, which I did.  He seems better, but his
>biggest problem is the dementia that goes along with the disease.  He is
also
>taking Xanax (0.25mg) with each dose of Sinemet --about equal to 1 1/4
tablet
>daily.
>Does anyone know if this combination affects the dementia he has, or is the
>dementia a by-product of PD.  I keep searching the net for answers, and
hope
>that someone can give me a clue.
>Thanks for listening.  Next time I'll try to be brief!
>Marilyn
>