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---------- > Fra: Ida Kamphuis <[log in to unmask]> > Til: Multiple recipients of list PARKINSN <[log in to unmask]> > Emne: Antw: Jo's Post > Dato: 22. september 1997 07:06 > > Dennis and Jo and all listmembers > > > You say it very beautifull,Jo. I tried to say about the same in my yesterday > posting. It is impressive that even for loving and intelligent people like you, > it is so difficult to fight your intuition, which is saying the wrong thing. > This one of the most "painfull" symptoms of Parkinson. I would like to hear > from you, Dennis (and Jo)and others, just how you manage to live with this. > But now, my pallidotomy comes first. > > Thaks to all who wished me strength and good luck. > > Ida Kamphuis > [log in to unmask] *** Dear Ida. I wish you good luck, and I`m looking forward to read your e-mail again. Sonia Denmark NEVER GIVE UP > > > My wife Joanna (Jo to everybody) wrote this. I am sharing > > it with the list with her permission. > > > > Jo's posting. > > ------------------- > > > > Communication : A Talking Point : A Carer's View. > > > > In the 70's and 80's the words 'Body Language' became everyday > > jargon. There were books on it, shows on it and some made their > > careers in explaining it and how to read it. I found it interesting and > > funny and would enjoy amusing moments when reading peoples > > body language, and it was quite helpful at times interpreting peoples > > emotions or state of mind, not to mention those of my husband and > > children. > > > > That changed, when in 1987 he became diagnosed with Parkinson's > > disease, and his body language slowly faded in front of my eyes. That > > animated face, easy smile and wave; being relaxed or tired; content or > > anxious; looks that I knew so well, things that I could read easily about > > him with a quick glance or even longer gaze had gone. > > > > There was many a time I would think that he didn't like something because > > the 'emotion' wasn't there to see. In fact the emotion was there but he > > just > > couldn't show it. The 'parkie mask' was very evident. Deep down I knew it > > was the disease, all the signs and symptoms were there, I'd read all about > > them. I'd get angry with myself after getting him to say how much he liked > > something and feel guilty when he say again, "I'm not bored , just 'parked'. > > > > His emotions are on the 'inside' - locked in by the Parkinson's, unable to > > be > > seen because of the rigidity, slowness and masked expression, this - in a > > man who is full of sensitivity and tenderness with such feeling for the > > world > > and the written word . > > > > It's frustrating sometimes for me not to get immediate feedback. They say > > patience is a virtue, but for parkie's partners it's a necessity to keep > > the > > very important channel of communication open. I'm still working on it. The > > Parkinson's won't go away and the 'channel' gets slowly more blocked. So > > we have to find other ways to get messages from our partner. Talking is of > > the essence. We must not be afraid to say what we feel to our partners > > for > > fear of hurting their feelings a little bit - they have a right to know. > > 'A stitch > > in time saves nine' so to speak. It is all part of the whole - > > communication. > > > > It wasn't long ago that for a week I didn't say that I felt 'left out', > > that we > > weren't really talking to each other. I thought he'd shut down from me and > > I > > thought something was really worrying him. Eventually, somewhat tearfully, > > I > > told him. He was shocked and saddened having had no idea that he was > > putting out these signals. "Please tell me when you feel like that - I'd > > never > > shut you out", he said. > > > > I said," I should have known". > > > > Another lesson learnt. > > > > Jo Greene. > > > > ++++++++++++++++++++ > > Jo, CG for Dennis Greene 47/10 > > [log in to unmask] > > http://members.networx.net.au/~dennisg/ > > ++++++++++++++++++++ > >