 |
 |
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