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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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hi all
peggy wrote, in part:
> A pharmaceutical company is flying me to St.
> Louis next week (Monday) to speak to about
> 200 newly trained pharm reps. The topic:
> "What It's Like to Live With Parkinson's"
> I want to be sure that I don't leave out
> anything, so I need your responses here,
> and I need them fast! I will only have about
> 20 minutes to convey to many who don't have
> a clue as to PD's effect, so be brief but
> thorough ...
and then someone wrote, in part:
> It's like living in a glass house and watching
> the world live its life ...
and then someone wrote, in part:
> Someone recently said to me that the effects
> Parkinson's has on a person can seem like
> character flaws to anyone who doesn't know
> what Parkinson's is ... it's extremely
> frustrating to live with Parkinson's and
> it never gets any better ...
and then someone wrote, in part:
> Not being able to make plans to do things
> with friends because you don't know if you
> will be off or on at a future date. This
> tends to add to the isolation ...
and then someone wrote, in part:
> PD is great fun if you are a masochist, If
> you enjoy watching your physical abilities
> gradually diminish over time, where it takes
> all your concentration to get across a room ...
and then peggy wrote, in part:
> Thanks for your input ... make those guys
> and gals who will be out there presenting
> the medical profession with reasons why to
> invest in their medication to drop their
> jaws in shock when they hear what it's
> really like. These sales reps will be
> the young "beautiful" people who have
> charisma and have never even seen someone
> who had to lose their self-dignity to such
> a debilitating disease ... "Your self-image
> is reduced until you feel like a freak in
> a side show." "You become a prisoner trapped
> in your own body." "You lose your dignity
> when someone has to help you do a task as
> simple as going to the bathroom." I don't
> want to scare newcomers here, but I am
> thinking of the worst scenario in order
> to "get my point across." ...
and then greg wrote, in part:
> Tell them we are not little profit centers.
> Tell them we are their brothers and sons
> and mothers and friends and uncles and aunts
> and fathers. Tell them to do their jobs in
> a way that allows them to sleep well at
> night. Tell them that we need their help
> as we fight to save ourselves. Tell them
> to care. Tell them we are them ...
for me
it's a gift
a tough slap-upside-the-head kind of gift
but a gift nonetheless
it forced me to look hard at my life
and at my priorities
i had to make some changes
what i had thought was important
suddenly wasn't
what i had thought was cornball sentimentality
suddenly wasn't
i grew to learn that i had not received
a sentence to a living hell
i grew to learn that any 'hell' was
of my own making and my own thinking
i grew to learn that this is a tough test
is all
i am in competition with no one
i am not being punished
i am being challenged
i will rise to it
and thus find the gift in it
janet
ps
that does not mean that i would refuse help
i am not a martyr
i need intelligent caring people on my side
as much as anyone does
and a smart and sensitive pharmaceutical expert
just might be one of the most important
members of my health care team
--
janet paterson
a new voice http://www.janetpaterson.net/
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340
an akinetic rigid subtype, albeit primarily perky, parky
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December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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