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