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Here is Stan's story in the Houston Chronicle (the last part of his letter). Debbie Bevel >Greetings from Texas: > >First, a few comments from the last three day's postings: > >TO: Elizabeth Southwood >Your story about the "six gentlemen" who visit you every day was delightful! >I'm glad to see there are others who maintain their sense of humor while >facing this horrid disease every minute of the day. I firmly believe that a >good sense of humor can help you deal with most anything. Best wishes for >continued laughs. > >TO: Kees Paap >Hello! I'm a newcomer to the list (about four weeks). I found your update >covering the last year to be extremely interesting.I also am very impressed >at the amount of work you are doing on behalf of PWPs everywhere. Even in >print, your optimism and high spirits are contageous. And any Parkie who can >still play volleyball and table tennis gets my vote as a determined fighter. >Please keep us updated on you and your activities. Best of luck from Texas. > >TO: Jefferson Harkins >Good for you! I congratulate you for NOT accepting one doctor's opinion that >"nothing could be done" for your father. You have discovered an important >fact about doctors and the practice of medicine: Doctors do not know >everything. If you don't believe you are receiving the care and attention you >deserve, talk to another doctor. Hope the solutions the second doctor >recommended will work for your father. > >TO: Brian Collins >Thanks for your responses to my first messages. I really enjoy reading your >postings. Your are very articulate and you appear to be very knowledgeable >about the subject. (I guess if you've had PD for almost 20 years you would >be.) I'm wondering how you tolerate Sinemet after taking it for 15+ years. >How many mgs a day do you take? How often? Are you experiencing any bad side >effects? Are you confined to your home and your computer or are you still >able to move around the city where your live? > >Now for something current: > >When I introduced myself a few weeks ago, I told you I was a writer. I've >been earning my living writing (news, advertising, public relations, business >communications) for more than 30 years. After I was diagnosed with PD 5 1/2 >years ago, I started writing novels and short stories in my spare time (No >sales yet, but who knows? Maybe next year. I do have an agent in New York >who's trying on my behalf.) I also try to submit free-lance pieces anywhere I >can. > >Recently, I submitted a "guest column" to the Houston Chronicle about dealing >with the Parkinson's monster. What do you know, they actually bought it! Paid >me U.S. dollars. > >I submit the following for your reading pleasure--- not because it's that >good, but as an example of the ways all of us can contribute to speading the >word about PD. Whatever your talent or skill, try to put it to work in >communicating to the masses messages about what we face. Be creative. You >don't have to be a writer to communicate. > >By the way, this appeared on the front page of the Chronicle's Sunday >Lifestyle section today. > >(reprinted from the Houston Chronicle, Sunday, November 17, 1996) > >PARKINSON'S CAN TURN >LIFE TOPSY-TURVY > >by Stan Houston > >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 U.S.attorney general, the >Harris County Attorney and I have a common bond. We're all 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 >also can 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 consant 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 you live with a bully? > >You learn to compensate, to be flexible, to be patient. > >My Parkinson's 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-first to the floor, you realize an adjustment is >required. > >How does one shower, dress, eat breakfast and prepare for work when one can >barely walk? You buy a walker, those three-sided contraptions you see >80+-year-olds pushing around in nursing homes. Sure, your'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 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. > Now? Who cares about credit cards and cash? Don't let me out the door >without at least three emergency doses of pills. > >Eventually, you 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 straitjacket. 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 house guest who's overstayed his welcome. > > -30- > >Stan Houston ([log in to unmask]) > > Debbie Bevel The Woodlands, TX [log in to unmask]