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Unable to communicate ? From the woman who (along with the others in the list) saved my sanity (possibly stopped me suiciding) when first diagnosed. Amanda > Date: Sun, 9 Mar 2014 19:41:13 -0700 > From: [log in to unmask] > Subject: Re: Blog > To: [log in to unmask] > > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn