Thoughts on giving advice to people over the Internet

   First, let's consider the subject of advice. If we try to avoid the slightest
risk of giving any sort of advice at all, because it may be inappropriate in
some cases, we are all going to end up afraid to sign our names, for fear of
influencing someone, somewhere.

   When you write to the list to recount some personal experience which you may
consider relevant to the subject, no-one is going to tear you to shreds,
Remember, you have one enormous advantage over any neurologist: Personal
Experience. That is what (In my opinion) keeps people coming back for more.
You may find that you are 'typical' in your response to a particular drug,
or on the other hand you may be one of a smaller group of PWPs with abnormal
reactions. It is vital for you to know which, because it governs the way
that you should interpret the experiences of others.

   Some of us with a fair amount of experience of PD, feel moved to try to
sort out some basic 'rules' , to gain some sort of insight or understanding
of the disease. Not only that, they actually try to communicate these
thoughts to the rest of the list - What arrogance!

   Those who are familiar with my postings to the list will know that I am
talking about myself.  I do hope that I don't strike too many of you in that
way. I do know that my endless quest for understanding has enabled me to
cope with PD much more effectively. ( In 3 weeks I will be celebrating (?)
18 years since diagnosis, 24 years since first symptoms, and 17 years of
levodopa use.

   I do know that I wish that I had known then what I know now, and it is
this aspect which really motivates me. Yes, some of what I write could be
called advice: So what? I reckon that I am addressing the toughest bunch of
rugged individualists that I have (n)ever met, and I know that you won't let
me get away with rubbish. My general rule is that I don't try to tell people
to change their prescribed medication - that is undoubtedly the preserve of
the neurologist and the patient.  (That does not stop me from recounting
some relevant personal experience). On the other hand, I feel that there is
no conflict involved in giving advice to new-comers about HOW they should
take their tablets. You have only to canvas a group of PWPs about how they
were told to take their first levodopa tablets to see that they simply
cannot all be right. The more reasonable neuros acknowledge the difficulty
that they have in this area, and are quite willing to discuss alternative
suggestions. Those that are not prepared to listen to the patient's input
either really do know it all, and should be nurtured and encouraged (because
there aren't many of them!), but are more likely to be worried that their
lack of experience will show if they are drawn into a debate.

I have rambled on so much that I don't have time to cover the other two
aspects which I raised, so I hope you will forgive me if I defer that
discussion until tomorrow. In the meantime to quote one of our much-loved
comedy teams "What do you think of it so far ?" (Traditional audience
response : Rubbish !!)
--
Brian Collins  <bjc@globalnet.co.uk>

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