Thanks Bill, needed that.
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-----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