Posted by Lory
on September 22, 2000 at 11:26:21:
In Reply to: PD can Turn Life Topsy-Turvy posted by Carole on September 22, 2000 at 07:40:08:
: We can all relate to this "guy"!
: PARKINSON'S CAN TURN LIFE TOPSY-TURVY
: by Stan Houston (reprinted from the Houston Chronicle, Sunday, November 17,
: Billy Graham. Muhammad Ali. Janet Reno. Mike Driscoll. Michael J. Fox. The Pope. Katherine Hepburn. Johnny Cash.
: 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, the religious leader of the world, the Emmy and Oscar winner, the guy who sings about another guy named Sue, 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
: Hurry guys. I have a houseguest whose overstayed his welcome.
: Stan Houston
Thanks, Stan for reprinting this. It certainly is NOT dated material. It is always to comforting to know that there are others out there who share my frustrations, my fiercely wanting to be independent, and the need to NOT become PD. Lory