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APhillips, I just read your blog. Nice work. I am looking forward to reading more of your clear writing style. Thanks Rick M -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]] On Behalf Of Patti Zapf Sent: Thursday, March 13, 2014 3:59 AM To: [log in to unmask] Subject: Re: Blog The blog below is fantastic!i sure enjoyed reading the two entries. I tried to post a comment but don't think it saved it, not really sure how to do it? Any suggestions would be wonderful. Please keep it up, thank you, Fondly sent to you from: Patti On Mar 10, 2014, at 2:19 PM, [log in to unmask] wrote: > MY HUSBAND AT 92 SUFFERING FROM ALL THE SAME THINGS----BUT--- THERE > IS LOTS OF HELP THRU THE PARKINSON ASSOCIATION AND NOW TELEHEALTH PROGRAMS. > LOOK FOR ALL THE INFORMATION REGARDING PARKINSON ON BOTH THE VETERAN > ADMINSTRATION AND MEDICARE WEB SITES. IT'S THERE---SO DO NOT GIVE UP UNTIL YOU > FIND IT AND ENROLL. > > MARGARET (HIS WIFE) > > > > > In a message dated 3/10/2014 2:28:20 A.M. Pacific Daylight Time, > [log in to unmask] writes: > > 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 > > ---------------------------------------------------------------------- > 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