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The most difficult aspects of this disease for me has been the reaction of my family. As soon as I was diagnosed with PD, my wife did a 180 turn and wanted me out of the house. My children got caught up in her campaign to make me leave. My wife did not want to have her life curtailed by being the caretaker of a chronically ill person. I was 55 at the time of my diagnosis. Things got so bad that finally I had to call Adult Protective Services. APS insisted that I be allowed to hire an aide to come in and help me as needed. The neglect and abuse that I experienced through the years gave me much time to reflect on evolution, the family, and survival. No one said on the Titanic, "the elderly and the disabled first!" There may be mandated Child Support that parents must provide, but there is no such thing as mandatory Adult Support from children. Nature is interested in the next generation, not the one whose prime has passed. And yet I didn't want to curl up in a corner and die. But luck played an important part in my continued existence. I met a lovely woman who was in a similiar predicament as my self. We joined forces and enhanced our individual chances of survivial. We happily take care of each other to the chagrin of our beneficiaries. David >From: rayilynlee <[log in to unmask]> >Reply-To: Parkinson's Information Exchange Network ><[log in to unmask]> >To: [log in to unmask] >Subject: Re: Newby/alone with PD >Date: Sun, 11 Sep 2005 12:07:44 -0700 > >Joe, as a PWP of almost 10 years and alone with a superdog as a caregiver, >I >would suggest that you need all the friends and relatives you can get. >Being alone makes everything twice as hard, but then again it may force you >to do things you didn't think you could do because you have no help. What >is left of my family is not very helpful or nearby. My favorite student >and >his wife are big supporters. > >I have always been alone and very independent, so needing help really >bothers me. I sometimes think passive types who have a spouse may get on >better than me but don't really know. At any rate I'm sure you will find >lifer list friends and their caregivers always willing to give advice. > >Another newby is another reason for some treatment results. There are many >advocacy groups on line and I'm sure their members and leaders will tell >you >about them. > >In the meantime, do everything you really want to do while you still can. >This disease is a thief and a real stinker. >Ray >----- Original Message ----- >From: "Joe Ryan" <[log in to unmask]> >To: <[log in to unmask]> >Sent: Saturday, September 10, 2005 5:25 PM >Subject: Newby > > >>Thanks for the welcomes , I'm glad I found all of you on this list. To >>answer some of the questions: I'm 61yo and have lived in Port Townsend WA >>for 25 yrs. My diagnosis "evolved" over several months when a friend who >>is a neurologist noticed how slowly I was moving. He thought I might be >>having Parkinson like side effects to Celexa which I had been taking for >>about a year to help me get over my depression following the death of my >>wife Lori. She died almost 3 years ago after a long battle with breast >>cancer. >>Stopping the Celexa however did nothing to improve the bradykinesia, and >>about a month later another friend noticed a very slight tremor in my left >>hand. To make a long story short I recognized more PD symptoms which I had >>been ignoring or attributing to "old age" or depression. They were not >>getting any better months after stopping the Celexa. >>My attending physician noted my gait and lack of expression and made the >>referral for a neurological work up. >>In the meantime I was all over the internet in a not very organized search >>for information and asking questions of my neurologist. By the time he was >>offering to prescribe meds I was wanting to wait because I was concerned >>about side effects. That was fine with him. Days later I saw my reflection >>in a large window and I was shocked. My arms were just hanging by my sides >>as I walked and my face looked disconnected from "me". For maybe a second >>I thought "I'm not here". I started Requip 2 days later which was a little >>more than a week ago. >>I found this list because it was mentioned in an article on a US >>government website which had high praise for it. >>I am bewildered by the number of associations, foundations, networks etc. >>Why so many? >>I haven't told family members about the PD yet (they are back in New York >>and Michigan) and I anticipate depending on my friends for support. I >>wonder how that has worked out for other single list members? >> >> >>---------------------------------------------------------------------- >>To sign-off Parkinsn send a message to: >>mailto:[log in to unmask] >>In the body of the message put: signoff parkinsn >>Joe > >---------------------------------------------------------------------- >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