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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