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Bill, I wish you had been around when I was first diagnosed. I come from one of those families where you don't talk openly about illness, it is something to be spoken of in hushed voices behind one's hands, and never to be mentioned in public. My mother defied all convention when she wrote to me - actually put down on paper, that she had been diagnosed with 'the big C' -- but then she was a wild one, always flouting propriety, after all she married that crazy musician..... To this day my uncle still politely enquires after 'that little trouble I had with my arm" My husband on the other hand was very concerned that my quality of life should not be impaired. But he did not trust doctors, or believe in group activities... so no support groups either. I knew nobody who had had PD, and nowhere to go to find out about it. I tried contacting Medline - you had to do it by mail in those days, with a 3 - 4 week turnaround and all they sent me were some abstracts on Wolff-Parkinson-White syndrome (not related at all). Even when we came to the States, and found doctors who knew a bit more, I still was woefully uninformed. And that I think, is the key to it all - knowledge. If you know what you're up against, then you can face it and meet it head on. Find out what you can about this horrible disease, and then you can cope with it - maybe you cant beat it, but you can keep it from taking control. What you say, Bill, the advice you give, makes so much sense. How many hours of misery and confusion I would have been saved, if someone had spoken to me in your words. I am glad you said them now, so the newer PWPs can benefit from your experience, and wisdom. Hilary Blue (49,25,16) Bill Harrington wrote: > > my humble hints > > MY Advice to those first diagosed with Parkinson's Disease > > I am NOT a Dr. I have only first aid medical training, nor do I have any > counselling > expertise. What I have had is 13 years of living with tihis disease and > made every > mistake imaginable- So I can at least tell you what not to do. > > So, you've just come rom the doctor's, who reluctantly informed you of his > diagnosis.. > Words like progresive, incurable will all stick with you. Here's the steps > I would > take were I possessed with the knowledge I have today. > > 1. Tell your spouse, parents, children, and your closest friends. Be > honest, with children > especially, prepare them for changes. You may not want to tell them at > work, not yet anyway. > But be prepared for the time when it starts affecting your ability. I > loved my job, for the > longest time I snuck in at night to do the work I couldn't during the day > making myself too > tired for the next day.... > > 2. If you don't have an excellent rapport with your doctor, change to one > you like. That goes > for neurologists as well. Don't be afraid to ask questions, make notes > before you go and > immediately after. Doctors are not Gods. On one stay in hospital, on > rounds, my intern > ws droning on and on, the rest shufling their feet. I put up my hand and > they all looked. > I said "I just wanted to make sure I hadn't become invisible!" I later > followed them into > their little cluster demanding to know when one was returning to answer my > questions. > One irritated fellow said "This afternoon!" I demanded WHEN this > afternoon, he said 3:18. > > 3. Educate your self about the disease and the drugs you are given. The > best resources > are local suppport groups, provincial and federal associations, the > library and most > impotantly yourr pharmacist. In most cases, pharmacists are more > knowledgeable than your > GP in the area of new and old drugs. > > 4.Given #3, don't dwell on all the horrors that are immenent. and become a > hypochondriac. > Many of the symptoms common 13 years ago are entirely manageable today. > > 5. Be optimistic. I''ve been involved since my diagnosis at 29, with many > studies > and was one of the first to have a Pallidotomy (brain sugery). I've seen > more real breakthroughs in the last 3 years than I did in the first 10. > > 6. Don't witrhdraw from everything you enjoy. Be aware you will not be > what you used to be > but you can't hide inside yourself or your house. Continue to exercise, > just do it in moderation. > If your px says don't drink alcohol, don''t. The stories I could tell > you.... > > 7. Make sure your primary cargiver gets some free time to enjoy > themselves, otherwise > they suffer burnout. A large % of marriages where one spouse has a > long-term illness > end in divorce. Mine ended after 18 years, sometimes the burden on the > spouse is incredible. > Encourage them to seek counselling with you for the natural anger and > depression. > > 8. There will (may) come a time when you no longer do your job, recognize > that fact and > plan financially for it. Get professional advice, it can save you > thousands of dollars. > > 9. Reduce the stress level in your life. Stress and Parkinson's do NOT go > well together > Keep your sense of humour. Laughter is one of the best defenses. > > 10. Use common sense. Know your limits and stay within them. Don't give up > but > don't put yourself in positions where you are driving when you don't feel > comfortable. > I find whenever I'm about to do something risky or foolish, I get this > queasy uneasiness. > I wish I'd listened to my instinct more often. > > 11. Find a way to vent your frustration. Painting and writing are good > choices. > > 12. Last, but most importantly, Whatever your religion or belief, get in > touch with your God. > He will give you the strength and courage you need . > > Bill Harrington