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Janet....thx for posting this msg...it provided food for thought....it was good to read it as it provided some rememberance of where I was emotionally (depressed is an understatement) when I heard those dreaded words (PD)....how much better I felt when I found this PIEN and realized I WAS NOT ALONE in this battle....how much knowledge I've gained in the past three years (much of it from this list and its resources)..... and now knowing that if I have to have PD, I'm glad I have it now rather than 10 years ago as we can talk about it openly and because at this point in time, there is more hope and encouragement for the future and a cure than there has ever been.. Joan Hartman > [Original Message] > From: janet paterson <[log in to unmask]> > To: <[log in to unmask]> > Date: 10/21/00 9:08:56 PM > Subject: rootling result - 052855 - re-dux > > hi all > > i have spent most of the day rootling around in the archives > > this one seems to want to speak up once more... > > jmp > > 052855 > > ------------------------------------------------------------------ > Post: 052855 > Date: 1998/12/01 > Subj: Getting REAL PD Facts / sugar coating / visibility > ------------------------------------------------------------------ > > hi laurie and john, > > > On 1998/12/01, john wrote: > >> On 1998/11/30, laurie wrote: > >> But if he had ONLY been shown the worst thing that > >> could happen to him as a person with MS I am afraid > >> that he might have ended it all right there. > > Exactly my point. > >> It is always good to know the most and the least. > >> That is NOT sugar coating, THAT is the truth. > > Indeed. AND it is of course vital that we have all the > > information, because that empowers us! It's only when > > we have all the facts that we can make good decisions > > about the future. > > when i was diagnosed 10 years ago > i knew zilch about pd > [john - that's canadian for nada] > > due to that ignorance > my reaction to the words of the diagnosis > was sheer terror > > i had images of total physical helplessness > being a prisoner inside my body > > i told my sister that night > that when i got to the point where i couldn't 'look after myself' > i would commit suicide > > looking back on those thoughts and feelings now > is like seeing me in an scratchy old 'silent movie' > > ten years later > my life has changed radically > only part of that is due to my health circumstances > most of it is because my priorities have changed radically > > they changed because > i realized i had been given a 'wake-up call' > > my then neuro didn't try to sugar-coat anything > but he did describe the med options and the slow progress > and refuted the idea that i had been given an instant death sentence > > so what was i to do? > worry myself into a self-constructed prison of fear > over what might happen to me > in a year? > in ten years? > in thirty years? > which one? or all of the above? > > i could be hit by a truck tomorrow > and what good would all that worry and fear about pd > [or about anything else] > have done me? > > none at all > and what's worse > it would have soured me to > whatever gifts life had offered me > in the interim > > i don't advocate hiding one's head in the sand > that's deliberate ignorance > and is a form of evil > [imho] > > i do advocate getting all the information possible > before coming to any conclusions > > but i cannot predict the future > that's been made pretty clear to me over the past 20 years > > i now admit freely > that i can barely figure out what's likely to happen next month > > > Another point that I wanted to make by my comment is that > > it is very important to make sure that there are some kind > > of protective net to catch the newly diagnosed person. Some > > way to catch that person before (s)he falls into that first > > depression, or when (s)he just has reached it. > > receiving news > about a chronic illness > is something that has to be grieved > it has to be worked through as part of the acceptance process > > maybe that terror that i felt > was a catalyst to my later enlightenment? > > the lack of knowledge and sensitivity [ = fear?] displayed by some > medicos > is only a reflection of the lack of pd knowledge in society > which is partly a reflection of our parkie forebears' > 'hiding in the closet' of shame and embarassment > which may have been a reflection of the times > > there are a whole lot of things > being talked about in public these days > that were 'hushed up' just ten and twenty years ago > > when i was diagnosed 10 years ago > selegiline was the greatest thing since sliced bread > comt inhibitors and other new meds didn't exist > surgery was extremely rare > > the rate of progress in research and options > seems to be increasing exponentially; > i can't help myself, > i feel hopeful about pd's medical future > > > That is a completely different question, though: How shall > > we make the neuros realize that a newly diagnosed person > > needs somebody to talk to, who can give support? And, even > > if the doctor understands that, he often doesn't inform the > > patient about support groups. > > i'm not sure if this is a completely different question > i think the general societal ignorance about pd > is implicated here > > which is all > part and parcel of our > complaining about being 'invisible' > > i concur heartily with dennis' idea of 'show and tell' > bring it all out into the open > the good and the bad > the reality > > which is exactly what has just started to happen > in the past few years / months / days > > back to my 'silent movie' analogy: > > learning about pd in general > and finding this forum in particular > were key components of the awe-inspiring jaw-dropping upgrade > to full-blazing-panoramic-technicolour-surround-sound extravaganza > that i now find myself in > > action! > > your cyber-sib > > janet > > ------------------------------------------------------------------ > | prev | index | next | > > http://www.geocities.com/janet313/wordspie/199812/052855.html > > > janet paterson > 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd > TEL: 613 256 8340 URL: http://www.geocities.com/janet313/ > EMAIL: [log in to unmask] SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada --- Joan Hartman --- [log in to unmask] --- EarthLink: It's your Internet.