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 === __________________________________________________ Do You Yahoo!? Bid and sell for free at http://auctions.yahoo.com