Hilary,

Believe me, there was no intent to offend; only to show what a minefield Q2
is.  I was diagnosed at 37, and had to retire at 45. Life's been no bed  of
roses for me either.

Bill
-----Original Message-----
From: Hilary Blue <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, September 23, 1999 7:41 PM
Subject: Re: NOT A POLITICAL SITE


>William Harshaw wrote:
>>
>> List Members,
>>
>> Remember that politics is merely the art and craft of deciding policy.
I
>> don't think P.I.E.N. should endorse specific candidates, but we could
have a
>> few litmus test questions for all candidates, for  example:
>> 1)    What are the public policy implications of neurodegenerative
diseases
>> becoming the second-largest killer, surpassing cancer, by the year 2040?
>>
>> 2)    How would you allocate funding amongst the neurodegenerative
diseases?
>>
>> 3)    What are your views on the use of human foetal cells and porcine
cells
>> in research and clinical trials, and ulitimately in regular surgical
>> therapy?
>>
>> Q2 is a real minefield.  For example, should you fnd research to cure MS
or
>> PD?
>>
>> MS usually strikes in the second and third decades.  Finding the causes
and
>> developing cures would mean that those who othrwise have MS - likely
about
>> three quarters of a million people would have:
>> i)    career earnings on which they would pay income tax
>> ii)    lifetime contribtions to social programs
>> iii)    a normal family life, with children, &c
>
>
>>
>***************************************************************************
*******
>> PD, on the other hand, usually strikes in the sixth or seventh decades
when
>> the estimated milion and a quarter victims are:
>> i)    past peak earning power, hence not a growing source of tax revenue
>> ii)    are consmers rather than contributors to social programs
>>
****************************************************************************
*****
>
>This is precisely the sort of attitude that angers me so much. I have
nothing
>against People with MS getting their fair share of govt funding etc. BUT,
here
>from within our own ranks from on of the most informed,   active,
influential
>fellow pwps, we get this antediluvian definition of PWPs as being OLD and
>PAST IT.
>I was 24 when i started showing definable symptoms of PD. Today, I was
finally
>told i will be getting my first SSI check next week.  And that i am now
>eligible for medicaid. SInce my husband died nearly 5 years ago i have not
had
>any medical coverage, lived on bereavement benefits which were stopped
several
>months ago, had my children placed in foster care as i was deemed unfit to
>care for them because of the PD, am currently being subjected to home
invasion
>by social workers trying to trip me up in my parenting   role.......
>I should love to be paying income tax, and making contributions to lifetime
>social plans - and most of all, i would love to be having a normal family
life.
>
>  AND I AM NOT THE ONLY ONE
>
>There are YOPD groups springing up all over the USA,  and more tragic
stories
>of the devastating effect this disease has on the lives of its younger
>victims. And we need to be recognized, and we need to have our problems
dealt
>with, just as much as we need that cure. Because, until that cure comes, we
>somehow have to survive.
>
>If I exist, there must be others out there just like me.
>
>Hilary Blue (50 / 24 / 33 )
>
>
>***************************************************************************
*********************
>
>
>> Carefully framed questions will elicit responses which will enable list
>> members to mae an informed decision
>>
>> -----Original Message-----
>> From: Bonnie Rowley <[log in to unmask]>
>> To: [log in to unmask] <[log in to unmask]>
>> Date: Thursday, September 23, 1999 4:10 PMor
>> Subject: Re: NOT A POLITICAL SITEa
>>
>> >All,
>> >
>> >I happen to disagree w/Mary - for the same reasons that other have
already
>> >stated.
>> >
>> >But I would like to add that this topic would be welcome on SPARKLE
(also)
>> >
>> >Bonnie
>> >
>> >In a message dated 9/23/99 3:05:29 PM Eastern Daylight Time,
>> [log in to unmask]
>> >writes:
>> >
>> >>
>> >>  This list is supposed to be about Parkinsons      compare symptoms -
>> >>  compare meds   and  side effeccts
>> >>  what type of neuro is best?  how does everyone cope   etc , have a
good
>> >>  cry and/or just get things off your chest ...
>> >>       There are enough other web site to get this stuff on and  it
>> >>  should not be overloaded w/ politics !!!
>> >>
>> >>  I left the web once because of too much
>> >>  "extra curricula"  activities & comments that had nothing to do w/
>> >>  Parkinsons.
>> >>
>> >>  If you want to TALK & ORGANIZE POLITICAL  ACTIVITIES... PLEASE
>> >>  JUST START A NEW WEB SITE !!
>> >>      THANKS
>> >>
>> >>  MARY E SANFORD
>> >>  [log in to unmask]
>> >>  Ocean City  Md  21842
>> >>
>> >>
>> >
>