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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn