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Thanks Bill, needed that. [log in to unmask] -----Original Message----- From: Bill Harrington <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, November 06, 1998 11:24 AM Subject: first diagnosis >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