Dear Listmembers:

Sometimes I feel like such a negative person.  My PD is progressing rapidly,
my voice barely audible. Manic mood swings are taking away what little
personality I have left. Always battling with mental illnesses and the awful
debilitating paranoia and hallucinations. These are the reasons I feel
negative.  I want to be the former eternal optimist that I can't find
lately. He is hiding behind the façade of a disease that masquerades the
true human inside.  Drooling while bending over to roll my newspapers and
quickly rotating my head around the room to see if someone had noticed a man
of only 40 trying to hide the fact that he is no longer the person he was.
Delivering newspapers at that age because of these problems I am explaining
right now.  A person respected and sometimes even admired or at least
respected for fighting the disease that was taking over his physical
abilities.  But, failing to deal with the mental anguish. The consequences
of watching the people whom are important in your life mentally deal with
him. Watching your father cry and rub the back of your neck because you
believe there is someone in the apartment on the second floor trying to ruin
your life through awful torturous tactics like causing sleep deprivation. It
makes me cry as I type this, because my family and girlfriend should not
have to go through what this 40 year old has had to deal with. Having to
deal with me with Parkinson's disease for almost 12 years now.

Experiences and awful frivolities that result from a disease as it
progresses and ruins people's lives.  And, it just is not fair that other
people's agendas should get in the way of finding better ways of correcting
these people's woes.  I would like them to step inside my body for ten
minutes of "off time". I would like them to feel the awful restriction
rigidity gives a person. I would like them to feel the awful frustrations of
bradykinesia.  I would like them to feel the insidious nature of
uncontrollable dance-like movements and the fatigue they cause.  I would
like them to feel like someone is out to get them and nothing in this world
could convince them otherwise.  I would like them to feel the tactile
hallucinations of snakes and bugs and rodents running up their legs while
trying to sleep in a dark room somewhere. I would like them to live inside
my body or any of my caretakers bodies for just one day. Actually I couldn't
wish any of that on the worst human beings.

I am at a boiling point, however. I want action now, not tomorrow or the
next day.  We have suffered enough. At least I admit I have.  I have just
gone through the worst consequence of my PD world.  I was sentenced to 4
years all suspended for burglary and 364 days all suspended for misdemeanor
assault.  I am serving 5 years probation while the suspended sentence hangs
over my head. It was caused by a drug-induced-psychoses that is well
documented in people that take Sinemet over a long period of time. I am
lucky that they had discovered this problem in PWP's or I would be in prison
right now.  I still feel guilt for the victim although there wasn't any
physical harm done to anyone.  Fear was caused though and that is enough
harm to inflict on anyone.  I am so sorry that this had to happen.  I will
never be able to forgive myself. I will not defend myself by saying that the
drugs themselves caused this. If I had taken better care of my drug intake
it would have never happened. That shall be my penance.  I deal with it
everyday.  Wondering what people think of me.  Whether there is any trust.
That is what I and others have been dealt.

That is why we must keep the pressure on!  We need action on embryonic stem
cell research and we need it now! So other people will not have to deal with
a psychotic PWP.  So PWP's can feel whole again. The physical problems are
hard enough to deal with. The mental health of a PWP is a whole other
ballgame.  We may not always show our symptoms but we always feel them.  We
shouldn't keep it a secret.  It is time to reckon with this and other
disease while there is time to help so many that have suffered so long.
Telling it like it is!

Respectfully yours,


Greg Leeman

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of Anne Rutherford
Sent: Tuesday, June 12, 2001 1:10 AM
To: [log in to unmask]
Subject: PARKINSONS--tell it like it is

     Is Kindness helping our Cause?


by Anne Rutherford.     Feb 2001  It appeared first in the Newfoundland
Parkinson News, our provincial newsletter.

When we put a good face on Parkinson's, because we don't want to be
labeled a whiner, are we really making things worse?

When we advise a Young Onset Parkinson Person (YOPP) not to attend a
Parkinson group, because of what they may see, are we just showing our
own fears?

When we hide at home, avoiding new places and new people, are we letting

Parkinson's win by default?

In a recent survey more than 90%  recognized Parkinson's as a medical
condition.    Great!!

However fewer than 10% of those interviewed were aware of how
debilitating  Parkinson symptoms can be.

Are people with Parkinson's  invisible?  Well, if you can't talk and
can't move,  you might as well not be there.

Sudden immobility would be noticed but Parkinson's sneaks up when you
are not looking and takes away your ability to communicate.  Handwriting

and speech are affected. Then facial expression disappears.......even a
smile is too difficult.  Driving is no longer safe as vision and
reaction time deteriorate. Aches and pains, cramps and falls keep you
close to home.

You have become an invisible person.

Are we watering down the message out of consideration for the YOPPs?  I
think we are.

Speaking as a former YOPP  I think we should tell it like it is.  Now.




     Is Kindness helping our Cause?


by Anne Rutherford.     Feb 2001  It appeared first in the Newfoundland
Parkinson News, our provincial newsletter.

When we put a good face on Parkinson's, because we don't want to be
labeled a whiner, are we really making things worse?

When we advise a Young Onset Parkinson Person (YOPP) not to attend a
Parkinson group, because of what they may see, are we just showing our
own fears?

When we hide at home, avoiding new places and new people, are we letting

Parkinson's win by default?

In a recent survey more than 90%  recognized Parkinson's as a medical
condition.    Great!!

However fewer than 10% of those interviewed were aware of how
debilitating  Parkinson symptoms can be.

Are people with Parkinson's  invisible?  Well, if you can't talk and
can't move,  you might as well not be there.

Sudden immobility would be noticed but Parkinson's sneaks up when you
are not looking and takes away your ability to communicate.  Handwriting

and speech are affected. Then facial expression disappears.......even a
smile is too difficult.  Driving is no longer safe as vision and
reaction time deteriorate. Aches and pains, cramps and falls keep you
close to home.

You have become an invisible person.

Are we watering down the message out of consideration for the YOPPs?  I
think we are.

Speaking as a former YOPP  I think we should tell it like it is.  Now.

Just a comment
Anne Rutherford, Newfoundland

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