Dear George,

Maybe vindictive was not proper usage. I have a tendency toward hyperbole
when defending a friend. I agree that Ivan doesn't need my help and that he
is an adult. However, I have seen what Ivan faces every day. Parkinson's is
certainly not a gift in the sense that it's symptoms and side effects are
not very pleasant. It can be frustrating. And I admit before I met him and
saw the courage he displays, I found the tone of his posts at times
abrasive. But, after meeting him and getting to know his relentless use of
all his energy towards finding help for himself and others, I find myself
not as objectionable to his approach. Let's face it, it is in fact an
insidious and continuous struggle that we face in battling PD.

Yes, I have seen benefits through the struggles. I am a far more patient
person today. I have always been laid back, however, I am much more in tuned
with others. For instance, I met a young man through a friend's daughter.
His name is Jesse. He is a wonderful but troubled youth. All of his trouble
stems from a severe case of adolescent stuttering. At times he suffers
speech blocks as long as 5 minutes. People always try to help by answering
for him or by finishing sentences. People are usually in too much of a hurry
to actually converse with him. I have found out that he is a very bright
young man with a lot of personality. The fact that he has trouble
communicating is difficult to say the least.

His trouble comes from a need to be heard. At times that need is
accomplished by seeking attention through actions that are not acceptable to
society. He and a friend took his friend's parent's car without permission.
He happened to be at my friend's house when the police came to question him.
He and my friend had fallen asleep in the family room while watching a late
movie. At 2am the bang at the door was from the authorities to ask Jesse to
go with them for questioning. Before my friend Mark could think of the
consequences of Jesse in a contentious situation with his exacerbated
stuttering it was too late. I know it is wrong for Jesse to use another
person's property without permission. My compassionate side says that it is
a prison that he lives in already. Without communication we would find it
much more difficult to be heard.

Ivan does not suffer from any lack of communication skills. He does fight
his battle alone most of the time. He is selfish in that regard. Who would
blame him. In my opinion, Ivan gets frustrated from time to time and maybe
vents a little through one of the few ears he has the attention of. I know I
said their should not be contention or vindictiveness on the list. My plea
is to just have people try not to react to a general statement that may not
be true. It may be injurious to some, but it is a very important for us all
not to overreact. George, I know you have been a thoughtful contributor to
the list. I bet we all have people we like and those we don't on the list.
It is natural for us to like certain styles of writing and we think we have
a perfect picture in our mind of that person. If you knew Ivan personally
you still might not like his personality, but I bet your respect would grow
by the minute. He doesn't take too many days off against the battle to find
a cure. I hope you both can find a common thread to relate with.

Take care and regards,
Greg Leeman 37/7

-----Original Message-----
From: George Lussier <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Sunday, March 22, 1998 12:57 PM
Subject: OF ALL THE PEOPLE I"VE HEARD FROM...


>Dear Gregory,
>      Of all the people I heard from I have the most trouble understanding
>what it is you are saying. I've read and enjoyed some of your previous
>posting but now I'm not sure what it is you are saying. For example in your
>3/21 response to Camilla's posting you say, among your gentle sounding
>words, "However, the last emotion we need on the list is vindictiveness."
>Was that comment directed toward my note to Ivan?
>
>> If it is in fact taking up space
>>in an already stressful daily routine, I wonder if it wouldn't be so bad
as
>>to react with a little encouragement or not react at all.
>
>Are you suggesting that I should react with encouragement when Iven says
>something that I believe to be unwise or outrageous? Ivans a big boy. He
>can take the heat.
>
>>e been silent a great deal lately.  My reasons are different from
>>Ivan's.  But, for someone to  say that they have enjoyed that someone with
>>Parkinson's is not participating is counter to the foundation of the idea
of
>>having a list.
>
>I confess, I enjoyed the silence and I doubt the reason for his silence had
>to due with his Parkinson. [OF course I don't really know] As to the tape
>updates I could not  deleted them fast enough. Vindictive? I dont think so.
>
> >I don't know most of you personally, but I do share a common
>>tragedy ....
>   Did you ever think of your PD as a gift? I know a few PWPs who are not
>troubled at all by their illness. One in particular,views  himself as a big
>fish in a small pond from where he can influence PD policy and events. He
>feels that he would have little influence as a more normal person. Is he
>sick? Not in the slightest
>
> >Self-esteem is a fragile but essential part of every human.
>     Some how I can't view me or what I have to say as damaging Ivan's
>self- esteem.
>
>>please try to have a little empathy when you disagree.
>         I do feel a little empathy for you. Really I do. So young to be
>beaten upon by this crappy illness
>
>MORE TO FOLLOW SOON
>   My best
>   george
>
>
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>