Jennifer....

I sent a modified (no grins or smirks) message to AARP.

Barb Mallut
[log in to unmask]

Dear Barb:
Don't trash my comments unless you have personal experience and/or
knowledge relating to the products mentioned.  My family has
experienced
unexplained relief in areas that are difficult for some non-flexible
MD's
to relate.  One of my sons has MS, I am being treated for PD and
other
family members find help with a variety of routine discomforts.  The
products suggested can be purchased at wholesale and I offer ideas
for
relief based upon known testimonials.  Many doctors and dentists are
strongly in support of magnetics! I am not suggesting "snake oil",
however, if it helped I might give it a try in some situations.

Bob
-----Original Message-----
From: Jennifer Smith <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Sunday, March 07, 1999 1:40 PM
Subject: Re: bert/aarp


>Barb,
>Very well put.  Perhaps you should send your well thought out
comments to
>AARP.  I think that anyone who has anything to say about this should
>respond to AARP.  They need to know that the people who know the
most
>about this disease, the PWP's feel that they have been done a
disservice
>by articles like these that give Parkinson's a BENIGN feature.
>Jennifer Smith
>
>Barb_MSN wrote:
>
>> Jay, David, et al....
>>
>> You used the word "benign" in your powerful response to David's
>> comment regarding the AARP article which some List-members had
>> previously commented on, and upon seeing that word that ol light
bulb
>> went off over y head - errrrrr.... in other words, it generated a
>> thought <smile>
>>
>> I believe most of the world has been stuck, kinda like a record
(YOU
>> all remember what a "record" is, dontcha?) needle can get stuck
>> playing the same fragment of song over and over and over again
till
>> someone goes over to the record player (THAT'S kinda like a CD...
>> only different... for all you REALLY young Parkies)
>> <wee smirk> and gives it a whack get the needle back into the
groove.
>>
>> It seems to me despite all our efforts to make the world see
>> Parkinson's as a disease that can and DOES strike people of ALL
ages
>> (even children, in recent years) that the non-PD-world still sees
>> Parkinson's as a benign disease (or a "condition", per the AARP
>> article) striking ONLY the elderly, and what-the-heck... old
people
>> are SUPPOSED to have a few aches and pains and to be kinda shaky
and
>> tremor-y aren't they? <groan>
>>
>> Suddenly, that nice, safe, AND benign picture of old people who
shake
>> a little is being forced out of the convenient niche  it's been
stuck
>> in for endless generations and it's actually becoming VISIBLE to
the
>> general population.
>>
>> With the advent of well known actor Michael J. Fox's public
statement
>> saying he's had Parkinson's for 7 years and is only 37 now, the
world
>> has been stunned by this obviously NON-benign disease which has no
>> cure, and appears to have LOTS more symptoms then that
>> not-so-devastating tremor.
>>
>> So here WE are, PWPs, our loved ones, friends, and others,
trudging
>> along struggling to get the Udall Bill FUNDED now that it's been
>> passed.  And we're pushing the researchers to get off their
>> derriere's and FINALLY tame, if not actually CURE this painful,
>> aggressive, degenerative and NOT-so-benign disease.  And after the
>> flurry of publicity for Mike Fox appears to have died down, we're
>> still the ones in the trenches, slugging away in order to NOT
present
>> a benign face to Parkinson's.
>>
>> Even tho it's SO alluring, even comfortable, to remain in our
little
>> safe niche, we're refusing to remain passive, invisible and BENIGN
>> any longer.  AARP should be made aware that virtually all who live
>> with PD are VERY aware it isn't a benign "condition."  It's NOT a
>> "condition"  we can be sooo comfortable with that it can even be
>> given a friendly, neighborly name like "Bert."
>>
>> PARKINSON'S SUCKS!
>>
>> Barb Mallut
>> [log in to unmask]
>> -----Original Message-----
>> From: Jay Henkelman <[log in to unmask]>
>> To: [log in to unmask] <[log in to unmask]>
>> Date: Sunday, March 07, 1999 6:11 AM
>> Subject: Re: bert/aarp
>>
>> >David,
>> >
>> >First of all, a warm welcome to our group!  I want to briefly
>> address the
>> >AARP article to clarify (in my humble opinion) why you have been
>> seeing the
>> >various negative responses from the list.  Firstly, with all due
>> respect for
>> >Mr. Mano, I don't beleive that anyone really cares as to the
manner
>> in which
>> >this person chooses to deal with his disease on a personal level.
>> If "Bert"
>> >makes his "condition" warm and fuzzy for him........I say
>> then.......all the
>> >more power......!  Where I would take exception (as I believe the
>> others do
>> >too) is when a publication such as Modern Maturity with it's HUGE
>> >circulation, prints an article that in essence.......makes light
of
>> what is
>> >otherwise, a potentially devastating disease.
>> >
>> >For decades now, Parkinson's has come up on the "extreme" short
end
>> of the
>> >stick in aggregate public funding for research etc.  The last
>> several years
>> >have brought Parkinson's Disease to a much higher degree of
public
>> awareness
>> >due to the efforts of many.......but certainly not by being "soft
>> and
>> >fuzzy".  As I see things, it is simply counterproductive to
publish
>> an
>> >article with such a "benign" message as to what Parkinson's
Disease
>> >represents for the millions who suffer its realities.  Obviously,
>> the editor
>> >of Modern Maturity does not suffer with this disease nor is
he/she a
>> >caregiver for a PWP.  If I should be mistaken, I hereby go on
record
>> as
>> >questioning his/her sensitivity and/or emotional state!  To
increase
>> public
>> >research funding, there must be increased awareness of what this
>> disease
>> >represents to us.......not the "smiley faces" we pass around to
each
>> other
>> >for our personal well being!
>> >
>> >The difference is what the public perception is of Parkinson's
>> Disease.
>> >Will our mandate for a cure be furthered by sprinkling "rose
pedals"
>> on the
>> >path for the politicians to step on?........My dog would gladly
>> provide a
>> >few "twisties" that I would rather leave on their political path.
>> Yes,
>> >sometimes the truth stinks but it will utimately make us
>> free........a cure!
>> >
>> >Aloha to all,
>> >
>> >Jay Henkelman
>> >49/39/30
>> >
>> >
>> >
>> >-----Original Message-----
>> >From: David Fein <[log in to unmask]>
>> >To: [log in to unmask] <[log in to unmask]>
>> >Date: Saturday, March 06, 1999 11:02 AM
>> >Subject: bert/aarp
>> >
>> >
>> >>im new and glad to be a part of the group.cant figure out why
>> everybody is
>> >>so"bent out of shape" about article...forgive the pun....its his
>> opinion
>> >>about how he wants to relate to his "condition". reminder..peole
>> have heart
>> >>attacks and call it a heart condition...many people refer to
>> themselves
>> >here
>> >>as  PARKIES...not m e but its ok...talk about cute...to each
their
>> >>own..again glad to be here.
>> >
>