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Sharon Your family will never understand because it is impossible to describe it. my first 5 years were great and even after DBS in 2003 I could do things. Now going on year 18 I'm in real trouble. I never knew talking, writing, doing anything could be so painful. Communication is so hard, it affects my whole body. I mean everybody can talk, right? I once said that PD is like rigor mortis without benefit of death, and I stand by that. But I look good, people say, so what could be wrong? At 78 I'm in good shape for the shape I'm in. -----Original Message----- From: Sharon Sent: Saturday, March 08, 2014 11:00 AM To: [log in to unmask] Subject: Re: Blog I'm glad to join in. Have had PD for a while although I'm still reasonably we'll. however, I need somewhere to air my feeling as my family doesn't seem to understand how I look at my possible future. I deserve this because my Father lived with PD for 20+ years and I never really understood what he was experiencing. I thought it was just aging and resented him because he never tried to do anything to help himself. Didn't know about abulia (the lack of motivation that was part of his longstanding depression). As you surely know its impossible to foresee the future and some of us will stay relavitively well, others will go on a never ending downhill journey that is not pretty. I think they want me to stay positive but I am being realistic in my fears, I believe. Thet don't seem to want to understand when I am experiencing something that I know is part of the disease and they think I am overreacting. They scoff at my double vision, crazy dreams, soft hoarse voice, shaky illegible handwriting, etc. Sent from my iPad > On Mar 7, 2014, at 6:44 PM, A Phillips <[log in to unmask]> > wrote: > > I've started a blog; if anyone is interested it's at > http://phillips-writes.blogspot.co.uk/ > Not much on it yet but am working on it. > The blog will probably just be about whatever I happen to feel like > writing about. > > Amanda Phillips > > ---------------------------------------------------------------------- > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn