I have a short essay piece confirmed for publication in tomorrow's Facts & Arguments section of the Globe and Mail. I'm kind of old fashioned and want to wait for a "hard copy" in the morning, but for some, that won't be an option. You'll find an on-line version here: theglobeandmail.com/life/fa...
cheers rk
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imshakydad
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What a nice article and an encouraging read. I wish you and your family all the best.
I was diagnosed in April 2004. I didn't tell my three children until their exams were over and I did want to tell them altogether. Children are innocent under these circumstances. If we tell them not to worry, they don't because they trust us implicitly. It was also difficult to say anything else as I too was trying to come to terms with it at that point.
I immersed myself in all things Parkinson's to try and understand the hows and whys of it and how to prepare myself for what was to come. The result was setting up a support group which I still run today and meeting some amazing people who encourage me and have got me to get on with life. The children have witnessed my progression and have taken my condition in their stride. I know they think I'm superwoman in the nicest way but this belief they have spurs me on and keeps me going. I'm not saying there aren't days when I think I want it all to go away - we all have our dark moments - but I so wan to see my children get on with their lives and careers, form relationships, get married, have children and so on, so I'll keep on being 'superwoman'.
Thank you for your kind words and for all you do for your family and others. Indeed, there are dark days for us all but it does help to once and awhile stop and re-frame the picture we see! Thx again. All good things, rk
I met my PD nurse two weeks ago and and I expected we would spend the time discussing meds. Intead she told me I had never really acccepted my Parkinsons, never came to terms with it. I'm hiding it away apparently and need to do something about it. She made some concrete suggestions. Get involved with PD group activities, 10 pin bowling, dance, singing etc. It was rather like a gay person being advised to 'come out'.
When I thought about it I realised she was right and what's more my wife agreed with her. For example I didn't want my grandchildren to see my tremor while baby-sitting. But of course they saw it and one of them actually named it, Grandad's jelly hand! I never even speak about it much with my children now in their 40s.
I decided to have a chat with the older granddaughter, 8 years . My PD nurse had sen tme a booklet on PD for children. There was a lot in the book so I decided not to give it to her but to just introduce the topic and it went down fine. For example what it was called, apart from jelly hand, the obvious symptoms, that it wasn't a disease like mumps or chicken pox and that you couldn't catch it. Grandad's coping well.
I have a long way to go with this but I think I 've made an appropriate start.
Interestingly, I met a gentleman a few days ago, a PD sufferer, who told me without much provocation that he was consciously and deliberately hiding his PD. So there's still a few of us diehards around.
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