PD INDEX: An Index to Parkinson's Disease Information on the Internet
Advice To The Newly Diagnosed
A PD Index article by Phil Tompkins
You learned that you have Parkinson's disease. You may have had
any of a number of reactions -- anxiety, disbelief, depression,
fear, relief, a sense of loss, a sense of injustice, or something
else. You may have wanted to cry on someone's shoulder or you may
have wanted to be left alone.
Since you are reading this, you must have questions about what
happens next and what you can do. That's a good sign. Your life
is not going to proceed as you may have hoped, but your situation
is far from hopeless. You will eventally face some limitations,
but, because Parkinson's disease (PD) progresses slowly, you will
have time to prepare for coping with further developments. And
every few years there will likely be some new and more effective
medicine.
I was diagnosed in 1990. It has been a learning experience, to say
the least! In retrospect there are some things I am glad I did, and
some other things I wish I had done, or had done better or sooner.
I set out to list these points for this article. Shortly afterward
I discovered a similar list, which was posted an AOL Parkinson's bulletin
board by Abigail Westwood, who has struggled with a Parkinson's-like
syndrome for 30 years! It is reproduced here with the author's
permission:
1) Get educated. If you have access to this site,
then you can also search hundreds of informational sites which report on
the latest research and treatments. Often, your doc is so busy, he doesn't
have TIME to do this -- help him/her out and show them what you have.
2) If a medicine doesn't work, or makes it impossible
for you to function -- it isn't for you! Don't be afraid to ask for a
change in medication. The idea of medication is to help you to FUNCTION,
not live like a zombie.
3) Join a support group, or start your own. You
are NOT alone. Many life-long friends come out of these groups -- and it
is CRITICAL to your health to have social support.
4) DEPRESSION IS NORMAL AND CAN BE TREATED. In my
experience, depression was present in 100% of neurological patients. This
suggests that being depressed is part of the pathology of
neuro problems. You are NOT depressed because you weak and cannot
cope -- you are depressed because you are stressed and your brain chemistry
cannot produce enough serotonin! PLEASE PLEASE do not hesitate to ask for
Zoloft, or Prozac, or anything else that will help. And PLEASE - do not
be ashamed of your depression -- OR your Parkinson's.
5) Get into politics as if your life depended on it,
because it will. In other words, VOTE.
6) VOLUNTEER. Stay active. The more contact with
the outside world you have, the better off you will be.
7) READ. Your mind is your most important muscle
and goes flabby without use. Your body may not want to run around the
block, but your mind still needs fresh air.
8) Refuse to be a victim. Yes this [disease] is
a royal pain. At the beginning you will be emotional and think you cannot
cope, or that it is a fate worse than death. Trust me..this will change.
You will see the world in a whole new way - a better way. You become
stronger spiritually, and wise about life. You learn to see beauty
everywhere, and how to read people. And you will learn patience and
forgiveness. ;)
I was happy to find that many of these points were on my own list. Getting
educated about PD was also my number 1 item, and it was among the first
things I had set out to do. I gradually learned that we need to know more
about PD than most professional medical personnel know. Unless your doctor
also has PD or is an expert in it, he/she will not know as well as you do
how you experience your symptoms and how they respond to treatment. And
you will need to prepare for situations in which people may not know
anything about PD, such as going to the ER for an unrelated condition.
The more you know, the better your care will be.
Also, to get the best care, consult a physician who is an expert in PD -- if
not a movement disorder specialist, at least someone who sees a large number
of people with Parkinson's (PWPs). A general neurologist may not be sufficient. Some neurologists
don't treat many PWPs or know much about PD.
I hope that some of the sites you find in PD Index will give you information
that is useful to you. After becoming familiar with PD
from introductory articles it might be
good to concentrate on the areas of symptoms
and medicines. You will need to be able to
distinguish between symptoms and side effects, for example, and you will
need to know the difference between symptoms which are due to PD vs.
symptoms due to other conditions.
Some important topics that I wish I had devoted time to reading up on in
the beginning are antioxidants and other
nutritional supplements that may be neuroprotective and may therefore
possibly slow the progress of PD. Your symptoms may have only just
appeared, but in order to exhibit enough symptoms to be diagnosed, you
have already lost as many as 80% of your brain's dopamine-producing cells.
Most physicians have not studied neuroprotection
in medical school or later. You will need to know what is supported by
medical research and what are empty claims of some health food purveyors.
You may have to take a calculated risk. If not many antioxidants have
been shown to be effective against PD, it is because no one has done the
research yet.
Also on my list was the importance of getting in touch with other PWPs.
See the support group and
person to person communication entries
in PD Index for specific ways to do this.
Depression is a complicated topic, and
for that reason I've put lots of references to it in PD Index, not only to
depression in PD, but also to depression in
general. Depression can arise in response to PD, or it can be part of
PD. It can also be confused with PD itself, since some of the signs are
the same: lack of facial expression, fatigue, lack of motivation, insomnia.
I was surprised to learn that apathy, which
is not quite the same thing as depression, is frequent in PD. For that
reason, making an effort to get involved is very important. This can take
the form of working to raise research funds as well as political advocacy.
You can't assume that someone else will take care of these things. There
aren't enough research dollars and enough concerned voters. Learn about
the organizations listed in PD Index. Donate
to support research, and convince others to do so also. The seed grant
program of the Parkinson
Alliance is especially worthy of consideration. Some of the
organizations take donations on line.
Research will achieve results sooner the more we support it.
Regarding point 7, I detect an aversion
to exercise that is similar to my
own. I always agreed (in theory) that it is good to try preventing my body
from going flabby as well as my brain -- one major disease is already one
too many and it would be better, to the degree prevention is possible, to
avoid any others that might have lifestyle causal factors. Luckily my
wife's loyal and friendly nagging is making me aware of the gap between
theory and practice. Now I'm trying to exercise more, by doing light
aerobics and learning tai chi.
It is possible to maintain a positive attitude. Since the time when I was
diagnosed, I have had to stop working before I wanted to, and I can no
longer play the piano -- something I had planned to enjoy when I retired.
My medicines don't work as well as they did at the beginning, and side
effects can be as bad as the disease. But a number of good things have
happened which would not have occurred otherwise, and for that I am grateful.
Foremost among them is that I have met some truly wonderful people. My life
is different, but it is no less rich.
June 2000
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