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I must confess that I haven't really been following this chain of emails. But as long as my children have been alive - 16 and 10 years - they have seen the close up and personal effects of PD. Now they see their grandfather curled into a fetal position, feeding tube and respirator in place. I don't think it bothers them too much because as I've said, they've watched the progression of this disease, pretty much from beginning to end. I will say that seeing him like that has made the whole family re-think end of life decisions, including the 10 year old. Carrie In a message dated 1/19/2005 8:30:28 AM Eastern Standard Time, Karen Frank <[log in to unmask]> writes: >I've been lurking for awhile - thought about unsubscribing, then thought >again! Anyway, I'm 47, diagnosed about 6 months ago. I'm a wife, mother of 2 (13 & >4), & a nurse. The discussion about children & PD has been interesting. As >you develop your ideas, Peggy, please consider the following regarding these >young people: > >While he cares about me very much, my oldest is embarrassed by my tremor. >Sometimes, like when we're sitting together at church or at the dinner table, he >simply puts his hand on mine to stop it/hide it. His feelings are more >pronounced, of course, when his friends are around. > >Once I was diagnosed, I told him about it & some basic things about PD. His >biggest concern was would I die. Once that fear was taken care of, he was fine. > >Good luck on your writings! >Karen > > >In a message dated 1/18/2005 9:02:02 PM Pacific Standard Time, >[log in to unmask] writes: >What I think is needed are books dealing with the child who is beginning = >to think independently - who notices that mom, dad, or a grandparent is = >"different" - something to appeal to the older child. I can also see a = >need for books on the psychological effects on adolescents and teens of = >living with a family member with a chronic degenerative illness like PD. = >=20 > >I have been dabbling in a little bit of everything advocacy-wise, trying = >to find my niche and wanting a way to contribute to the PD community. I = >think you have given me the idea! I'm going to start thinking in the = >direction of publishing a book that would be of benefit to the younger = >person(s). I hope you will help me along the way! > >In fact, if you will start sending me your ideas here, I'll try to = >incorporate them. THANKS for the motivation! >Peggy > >---------------------------------------------------------------------- >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