 |
 |
Greetings Mr. X and fellow List Members, You are a retired aerospace executive, 64 yrs, diagnosed 2 years ago. Your retirement plan / (dream) has been destroyed by this terrible disease. I am a mechanic, 53 years old, still working, diagnosed 4 years ago. All my plans and dreams have also suffered some brutal bumps since I began to experience my first symptoms in my middle 30's. Your plan was to live an extraordinarly active life--competitive bicycling and triathalons (age adjusted), and lots of golf, skiing, hiking, evening walks on the beach and worldwide travel. Mine too! I thought I would run 10 k's every weekend for the rest of my life, throw in a few marathons or half marathons, cycle, hike, sail, climb mountains, play soccer, volleyball, walk on the beach, travel......right on! In your career, you worked prodigious hours with intense self-motivation so that you could contribute to your company's competitiveness and profitable growth. I still do much the same, although the intensity and efficiency are flagging less and less. I'm still one of the keys in pushing the company in spite of Parkinson's. I've had to modify my goals drastically. Now my plan is to keep working until I qualify for a retirement pension with lifetime medical benefits. When the stress of all this compounded, you promised yourself that you would make your retirement dreams come true, so that all that was the price you gladly paid for the satisfaction while working, and the promise of your golden years. Instead, you must now deal with: poor golf ability, inability to compete in biking and triathalons, no more skiing, and with your loss of voice volume and resonance you are inhibited at social functions. On your scale of things, your life is a living Hell. Been there, done that.....Ten years ago in the grip of undiagnosed PD and undiagnosed Clinical Depression and with a diagnosis of early multiple sclerosis, I divorced my wife, tipped my entire life on its edge, and went through the living Hell you speak of. Somehow I survived and began to take charge of my life. Once someone is in charge all the pieces reassemble and life takes on a new importance. I've been learning how to manage every day ever since. I learned not to fall, regained my speech, regained my confidence, took ballroom dance lessons, remarried, and life is a blast on a different scale! Frozen, your facial expression turns people off. Loss of strength/endurance ruins your active life, loss sexual potency causes you anguish. Sleeplessness is severe, and compromises your car driving (fall asleep at wheel). You can smell nothing but the strongest odors. You hate the thought of increasing tremors, and expect that if/when it begins, your pride will keep you from enjoying continuing friendships, and beginning new ones--You will become a hermit. Restless leg syndrome brought on by this curse causes you aches and pains anytime your levadopa balance gets low, and makes it impossible to sleep, which makes you irritable and your poor wife must deal with that. I know exactly what you're talking about! I came clean with reality and all my family, all my friends, all my neighbors, all my bosses, all my co-workers, all know that I have Parkinsons and might sometimes have an expressionless face. They know I don't care if they can't handle this so most of them just do handle it! I don't dwell on Parkinson's so after a while it is just the new normality and life goes on. The ones who really can't understand my lack of stamina / endurance are my grandchildren. When you don't concentrate too hard on sexual potency sometimes it works unexpectedly to your benefit. Sleeplessness is a major problem for all of us and when we must give up driving, we must! I still rent a car when we travel, but my wife is driving more and more. I still drive to and from work. Herbal teas help me sleep. The tremors don't seem to be a problem as long as I am busy so I stay busy all the time. I work full time, I volunteer, I have hobbies, I fix computers for the disabled, we travel, attend functions, and there is no time to dwell on questions that have answers I won't like. In summary, from a man with everything to live for, you find yourself asking how much longer can you go on, and often your nightly prayer is that you don't wake up." Your life expectancy is probably 20 more years at least. There are treatments for Restless Leg Syndrome and for Insomnia. I reccommend you get busy and start managing your new life with a new passion for today. Parkinson's is not like a stroke or a heart attack or cancer or Aids. It is much less immediate. That said you still need to manage Parkinson's yourself. You need to take charge, brush off your attitude and your poor wife may suddenly discover a new found richness! I don't actually pray for myself, but if I did I'd pray for better things. I usually doze off thinking how I'll fill my next day and the next.............and what I can do for all the others who are supporting me! All the best Mr. X ..................... Murray [log in to unmask]