Thank you for posting on the list, thus ending my unnecessary struggle with myself. Nita

KF Etzold wrote:

> As per request ... I re-read it. Yes, it is worth reminding ouselves. Now what
> we need a letter like that for Care-givers.
> K-F
> ----------------------------------------------------------------------------------------------------------------------------------------------------------
> PARKINSON'S CAN TURN LIFE TOPSY-TURVY
>
> by Stan Houston (reprinted from the Houston Chronicle, Sunday, November 17,
> 1996)
>
> Billy Graham.   Muhammad Ali.   Janet Reno.   Mike Driscoll.
>
> None of these people are my friends.  None of them even know me.  In fact, I'm
> not certain any of them have ever met each other. But the world-famous
> evangelist, the ex-heavyweight boxing champ, the US attorney-general, the Harris
> County Attorney and I have a common bond.  We're all a part of a fraternity no
> one wants to join.
>
> We have Parkinson's disease.
>
> Parkinson's is a brain disorder.  Simply put, brain cells gradually stop
> producing the substance (dopamine) that carries signals controlling movement to
> other parts of the body.  Reduced dopamine means limited signals. Eventually,
> you lose the ability to move without the aid of drugs. Unfortunately, the drugs
> often lose potency after several years of use. They can also produce severe side
> effects --- nausea, insomnia, depression and, in the later stages, wild,
> uncontrollable movement of the head, arms and torso.
>
> Those of us who share this nightmarish neurological link often find our lives
> turned into a bad imitation of Lewis Carroll's Wonderland.  Here, says the Mad
> Hatter, swallow this pill to stop those tremors.  Sure, the White rabbit chimes
> in, pop more drugs so your hands and legs will work.  Say, the Jack of Spades
> muses as he waves his sword, how about a brain operation today to reverse those
> nasty side effects?
>
> Sometimes you wish the Queen of Hearts would put an end to it by yelling, "Off
> with his head!"
>
> But that would be too easy.
>
> Parkinson's disease is not fatal, just infuriating.  It robs you of your
> independence, steals part of your future, and fights to turn your life into a
> three-ring circus of false normalcy, pill schedules and drug-induced depression.
>
> It becomes your constant companion, much like an older brother who follows you
> everywhere, reaching out every few minutes to smack you as a reminder of who's
> in control.
>
> But only if you let it.
>
> How do live with a bully?
>
> You learn to compensate, to be flexible, to be patient.
>
> My Parkinson companion moved in 5 1/2 years ago.  I was resentful at first,
> preferring to live only with my wife (Shirley), my dog (Garp) and my book and
> video collections.  But it behaved, acting benignly enough at first to lull me
> into a common early-years fantasy shared by many PWPs (People With Parkinson's).
> Hey, this isn't so bad, I told myself.  take a couple of pills three times a day
> and life goes on.  I can deal with this.
>
> But I soon learned a difficult lesson.  With my house guest. nothing stayed the
> same.  Parkinson's is progressive, so my adversary's negative impact on me
> increased as the years passed.  Any time I got cocky, thinking I'd discovered
> how to deal with my uninvited guest , it would throw something new at me.
>
> Much like Alice in Wonderland, PWPs must constantly employ their wits to
> outsmart their live-in adversary.  Example:  When you step out of bed one
> morning and fall face down on the floor, you realize an adjustment is required.
>
> How does one shower, dress, eat breakfast and prepare for work when can barely
> walk?  You buy a walker, those three-sided contraptions you see 80+ year-olds
> pushing around in nursing homes.  Sure you're only 53, I told myself as I tossed
> my American Express card at the clerk in the medical supply store.  You can push
> a walker around your home every morning until the day's first pills kick in.
> It's a small price to pay for maintaining mobility.
>
> After a few years you realize your entire life has changed.  Even the little
> things.  Not  long ago, my first priority before leaving the house was to make
> certain my wallet and keys were securely stuffed inside my jeans pocket.  Who
> cares about credit cards and cash?  Don't let me out the door without at least
> three emergency doses of pills.
>
> Eventually you'll learn there's only one way to deal with this madness:
> acceptance.  Treat the disease as you would any other aspect of your life, no
> more, no less.  Don't let it overwhelm you, and above all don't let it change
> you.  Recently a close friend told me, "Parkinson's has become a part of you,
> but it hasn't become you."  that, I believe, is a goal every PWP should adopt.
>
> But even with acceptance, fantasies about a return to a previous life struggle
> in our Parkinsonian brains, like a mad man in a straightjacket.  We accept our
> fate, but would still welcome a reprieve.
>
> The National Parkinson's Foundation spends millions every year on research.
> Their goal is to find a cure by the year 2000, a little more than three years
> away.
>
> Hurry guys.  I have a houseguest whose overstayed his welcome.
>
> Stan Houston