So eloquent. I'm going to print it up and pass it out
to everyone I know who needs some PD
awareness/education, starting with my family.
                     Carole H.

--- janet paterson <[log in to unmask]> wrote:
> >>> Posting number 41192, dated 3 May 1998 09:53:03
> Date:         Sun, 3 May 1998 09:53:03 EDT
> From:         Janet313
> Subject:      Re-post: Joan Samuelson's testimony
>
> hi all
>
> i thought this was worth repeating
> and certainly worth including in the pd webring
> it is one of the most powerful descriptions of pd i
> have read
>
> janet
>
> ----------
> TESTIMONY OF JOAN I. SAMUELSON
> PRESIDENT, PARKINSON'S ACTION NETWORK
> Hearing of the House Appropriations Committee
> Labor, Health and Human Services Subcommittee
> February 4, 1998
>
> I am one of a million Americans afflicted with
> Parkinson's disease and related
> disorders.
>
> I also am President of the Parkinson's Action
> Network, which was created in
> 1991 to give a voice to our community in the effort
> to speed research
> delivering breakthroughs and a cure for this
> dreadful disorder.
>
> I have the job today of focusing your attention on
> the particular needs of my
> community, and  to convince you that the 1999 budget
> of the Labor-HHS
> Appropriation must - yes, must - include a
> substantial increase for
> Parkinson's research funding, pursuant to the $100
> million authorization in
> the Udall Parkinson's Research Act enacted in the
> last Congress.
>
> Why am I so emphatic?
>
> · Because the current federal policy on Parkinson's
> wastes billions in public
> and private dollars coping with its effects, when
> millions would produce a
> therapy that would restore function, and bring us
> back into the world.
>
> · Because the disparity in funding attributable to
> variations, invisibility or
> political clout cannot continue.
>
>
> Parkinson's - the disorder:
>
> Parkinson's is a movement disorder caused by the
> degeneration of brain cells
> that produce dopamine, a neurochemical controlling
> motor function.
>
> By the time 80% of those cells stop functioning,
> symptoms of stiffness, tremor
> and slowness of movement begin to emerge.
>
> The conventional treatment for Parkinson's is a
> 30-year-old drug commonly
> known as "L-dopa"  which attempts to replace the
> missing dopamine with an
> artificial substitute.
>
> It usually restores function to a certain extent and
> it may seem at first like
> a miracle drug.
>
> But it works inefficiently, it produces
> side-effects, and eventually it does
> not work at all.
>
> As the dopamine cell degeneration advances, it
> strips away automatic movements
> needed to walk, talk, swallow, even move at all.
>
> Parkinson's - the impact:
>
> Initially, we survive on a diet of desperate hope,
> fed by L-dopa and related
> medications.
>
> We attempt to keep work, family and life moving
> smoothly, as the symptoms
> change in degree and combination throughout the day,
> affected by diet, stress
> and fatigue.
>
> Almost immediately, though, things dear to life are
> taken, such as, in my
> case, the love of running and backpacking.
>
> That begins a process of loss that advances to strip
> away essential functions.
>
> The impact on work:
>
> Very soon it begins to affect working life, making
> jobs dependent on motor
> skills impossible and jobs with any measure of
> stress increasingly difficult.
>
> In a 1988 study, a group of researchers at the
> University of Rochester
> calculated that of the 44% of Parkinson's patients
> in the first stages of the
> disease, 31% would lose their jobs within one year
> as a result of Parkinson's.
>
> Despite the common myth that Parkinson's only
> affects the oldest sector of the
> country, in fact the average age of symptom onset is
> 57, with a third of all
> victims' symptoms starting in their 20's, 30's and
> 40's.
>
> As a result, Parkinson's-caused early retirements
> and forced disability are
> the norm.
>
> Some lose their jobs simply due to the stigma.
>
> The financial impact is enormous.
>
> Every sort of work is affected.
>
> People who must have reliable motor movement to do
> their work - beauticians,
> house painters, typists - lose their employment
> quickly.
>
> For the rest of us, it is a somewhat slower process,
> but at some point the
> tension of worrying about how to fit a job's demands
> in the daily schedule of
> Parkinson's symptoms simply is too much.
>
> In my case, as a practicing lawyer and now running
> am advocacy organization
> for our community, these are my daily struggles:
> worrying about getting to a
> morning meeting and wondering when my first dose of
> medication will "kick in,"
> enabling me to function; needing to make a phone
> call, but not being able to
> hold the telephone still with a shaking hand; seeing
> others put off by my
> lurching gait, or my trembling hand.
>
> The impact on daily functioning:
>
> At some point the symptoms become an impossible
> hurdle, as the tiny number of
> dopamine neurons left functioning just can't team up
> with the medication any
> more, and are complicated by drug side-effects.
>
> At that point, the swing between too little and too
> much movement is just too
> much to manage in the outside world.
>
> We may continue living for a long time, but we drop
> out of sight.
>
> The nation - indeed, the world - has been riveted on
> the impact this disorder
> has had on Muhammad Ali.
>
> It is essential to remember the unknown Americans
> who, like Ali, are losing
> the battle to live a normal life.
>
> They tell of family holiday dinners they can't
> attend, for fear of knocking
> food off the table.
>
> They talk of walking into the bathroom, then
> suddenly freezing up and needing
> help to finish bathing or using the toilet.
>
> Every person afflicted with Parkinson's can describe
> the effort to manage
> their medication so they are at their best when out
> of the house.
>
> And then, one day, that person starts disappearing,
> as the act of coping
> becomes too much.  Perhaps if we died soon as a
> function of Parkinson's its
> impact would appear more dramatic.
>
>
=== message truncated ===

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