To all:
 
I have noticed the large number of children of parkinsonian parents on the
list service.  Your interest and concern for the health and welfare of your
parents is very important and very encouraging. PD is known as the "The
Silent Disease" because so often both patient and spouse find it either too
difficult and/or embarrassing to remain active or don t want others to see
what is happening.  It is sad to see this happen as active social contact is
so important in maintaining a good quality of life and good health.  Tremor,
drooling, balance, festination, stooped posture, bradykinesia, poor
handwriting, low voice volume, problems with swallowing, seeing, tasting, low
blood pressure and even bouts of dementia, any one of which, if strong
enough, can cause the patient to withdraw from society.  One of the major
problems in PD is depression.  Often this can be properly treated with
significant changes in the quality of life.
 
It is very common for parents to understate the severity of their PD to their
children and also understate the devastation PD causes to their  Quality of
Life .  They don t want to disrupt the  busy  lives of their children and
maybe even be a burden.
 
On the other side, the children of PD parents should have more than just a
"parental concern" for PD.  Recent published papers talk about a single gene
that may exist in some families making PD inherited either on the paternal
side or maternal side.  This could account for as much as 20% of the cases.
 These odds of inheritance are too high to ignore.
 
If PD is not inherited in your case, then the theory of genetic
predisposition seems to be reasonable.  In this theory there is a gap in our
genetic makeup. Should we be exposed to a toxin that can fit through this
gap, Parkinson s disease starts.  It is the thinking of some researchers that
this exposure often happens before age 10.   Since we and our parents are
very close during the formative years, both you and your parent may have been
exposed together.  Now you have a selfish concern for the well being of your
parents.
 
There are really two reasons I talk about the care and concern of parents by
their children.  The first reason is that there is an organization called
COPS (Adult Children of Parkinsonians) that exists in Southern California.
 The group was founded by Jo Rosen.  Either her mother or father was
diagnosed with PD.  An autopsy later showed the correct diagnosis to be PSP.
 About three years ago, Jo s husband Al was diagnosed with PD.  COPS has a
wonderful newsletter.  Topics from living wills to respite care are
discussed.  Jo asks for a donation of $25 annually to cover newsletter costs
and add to her money-raising effort to provide respite care.  If interested,
send your name and address along with at least $25 to:
 
Children of Parkinsonians
73-700 El Paseo, Suite 2
Palm Desert, CA 92260
(619) 773-5628.
 
The second reason children of parkinsonian parents should be concerned is
that they have the strength and energy to change their future.  Taking an
active interest in support groups will enhance your understanding of PD
medications and the general  quality of life  issues faced by your parents.
 Active participation in community awareness programs such as walks and talks
would really be appreciated.  Finally, active financial and energetic support
of efforts to increase government funding of research in neurological
diseases is really needed.  Currently Parkinson s disease gets about $30
million or $30 per patient (1 million patients) of federal research money.
 Contrast this to Alzheimer s disease which gets $300 million or about $75
per patient ( 4 million patients ).  It is my guess that the Alzheimer s
success with funding of research did not come from the patients.  My guess is
it came from the children of parents with Alzheimer s.  We need your energy
and support.  Please don t stop with just concern for your parents.  Become
involved in stamping this disease out.
 
Yesterday I attended a symposium that had a breakout session for adult
children of parkinsonian parents.  I attend that session and saw love, frustra
tion, anger, confusion and the list of emotional states could go on as long
as there were words to describe them.  I learned that our parents spent on
the average 17 years caring for us.  We in turn will spend on the average 18
years caring for them.  I also learned that the sibling furthest away knows
the most about what needs to be done.  Overall, what I saw and heard was love
and concern for their parents and a lot of confusion and misunderstanding
about Parkinson s disease.  They had read books about PD, knew the words and
the names of the medicines.  What they were learning was what living with PD
was all about.  One man said,  Before today I thought I was the only person
in this world going crazy trying to understand what was happening to my
Mother.  You don t know what this symposium has meant to me.  I have learned
so much and now understand much better what my Mother is dealing with and how
I can better help her.  And I am sane.
 
If you are interested in learning more about what can be done to increase
federal funding for Parkinson s disease research, contact
 
Joan Samuelson
Parkinson Action Network
822 College Avenue Suite C
Santa Rosa, CA 95404
(707) 544-1994
(707) 544-2363 Fax
 
In the past two weeks I  met a lady who helped me accept my PD some six years
earlier.  At that time she was very active in support groups.  She had been
honored by her city and state for the work she did to help the PD community.
 Through all those years she did not receive much support at home from either
her husband or her grown children.  When I saw her recently, she was grossly
under medicated.  She even bragged that at times it has taken her two hours
to just get out of a car.  She lets everyone know how bad she is feeling.
 Her family doesn t understand.  In a sense they are still ignoring her and
expecting she will do things for herself if left alone.
 
I talked to her at length. What I observed was not good.  I am not a
physician, but there are some things I can mention.  She claims her physician
is telling everyone it is better to be under medicated, that way one will
minimize the adverse side effects of anti-Parkinson s meds.  The results of
the reduced medication state were:  bradykinesia, stooped posture,
festination, tried all the time, bladder control problems, tremor, blurred
vision, swallowing difficulty, concentration and memory difficulty, demanding
help and attention all the time.  She could only talk about her problems and
how difficult life was for her.  I asked her to increase her meds slightly,
but she refused.  I actually think she liked her rotten quality of life.  She
wanted everyone around her to have the same quality of life she was
experiencing. The thought of taking a drug for depression was tantamount to
admitting she was mentally ill.  She is back at her home in the midwest.  Her
husband and children do not understand her behavior.  I will leave it at that
for now.
 
Regards,
Alan Bonander ([log in to unmask])