hi all

if you are not interested in this subject
might i remind you, gentle reader, 
that it is your prerogative to delete this

a number of you have expressed confusion and concern 
over this latest list experience 
[who said the list was getting boring?!]
so i have pulled together the entire thread
of howard/martin messages in near chronological order

for brevity's sake
i have eliminated duplicated messages and signature files
but it's still pretty lengthy

which is probably understandable
since this is still pretty mysterious [ to me, at least]

i am still wondering...


janet
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Date:         Sun, 7 Feb 1999 02:41:05 EST
From:         Howard Collins <[log in to unmask]>
Subject:      (no subject)
-------------------------------------------------------

New Member
Howard Collins

My history is typical - 60 year old male, married to a lovely lady.  Years spent, thinking I was coming apart, one fastener at a time, or was going completely mad one day at a time!  Numerous Neurology Clinics, no help. Then came the day that a name was attached: Parkinsonism!  Finally, a treatment regimen could be prescribed, and I could take my life off "hold." Research however, reflected that my symptoms were not classic.  Why?  What did it mean?  Was something missing?  My Neurologist, a personal friend, with tears in his eyes, explained that my diagnosis WAS different, i.e., not the Parkinsonism that we think of where we grow old and fade away, and unable to walk without help, but, with the Sportspage in our hand!

No, mine was a special situation, he allows.  A rare derelict form of Parkinsonism, but called CBDG + PSP!  (CorticoBasal Ganglia Degeneration and Progressive Supranuclear Palsy.)  Very impressive, I thought, until I found it meant that my disease was terminal.  Within the next year or so, I would likely give up this body....The 20 or more years originally promised were suddenly gone; jerked away like a Magician's tablecloth, but with all the dishes crashing.....

Many of you are probably dealing with something similar; I am not alone with this insidious thing.  But, while my mind tells me that I am only one of many, my viscera's are silently screaming...

I am (or was) an emotionally strong person, but now, loneliness is creeping in as are doubts of personal worth.  Prozac and Sinimet have become addictive, nebulous 20 Mg conveyances to buy me another day....another week....I guard them jealously...

Scared?  No      Uncertain?  Yes      There were those times when I fantasized about what I'd do if I knew when my demise was certain....well, it's here, but there is no pleasure.  Irrespective of self-induced pity, though, I know that there are those of you who need help much more than I.  So, perhaps I can be a good listener for those of you who may need to just "talk."  My ears are still working !!   ( ; )       Send me E-mail if I can help........

Very, Very Sincerely,

Howard Collins
[log in to unmask]

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Date:         Sun, 7 Feb 1999 05:01:19 -0500
From:         "Marjorie L. Moorefield" <[log in to unmask]>
Subject:      Been There
-------------------------------------------------------

Done that, but they were wrong!
11 years later I'm still here!!

Welcome Howard, You have come to the right place, most of us are up most of the night too.

Maybe some kind soul will give you the Web Ring URL, Since it's almost 5 a.m. I'm getting too sleepy to think clearly. There you will find out about our personal lives, and how many of us cope with PD.

In my own humble opinion I think maybe you should ask your Doctor for something besides Prozac.  It has a tendency to make one even more depressed. There are better drugs out there now, which don't seem to have that side effect. Since you are lucky to have a Neuro. for a personal friend, I'm certain he wouldn't mind if you ask. My little Sis almost committed suicide while on Prozac, they'd have to catch me to make me take it.  I think I can still out run them too!

As Ever,
Marjorie Moorefield
just another librarian with PD
66/10

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Date:         Sun, 7 Feb 1999 06:36:29 -0700
From:         "Kathrynne Holden, MS,RD" <[log in to unmask]>
Subject:      Re: (no subject)
-------------------------------------------------------

Dear Howard,

Welcome to the list, and to all the love and caring we can offer. Your grace, dignity, and willingness to share and to help others are an inspiration to me, and I will carry it with me from day to day. My thanks to you for such a powerful and graceful message, and for drawing us into your life in this way. Thank you for being there for all of us.

Kathrynne

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Date:         Sun, 7 Feb 1999 06:20:00 -0500
From:         Mary Helen Krane <[log in to unmask]>
Subject:      PSP LISTSERV AVAILABLE
-------------------------------------------------------

There is an on-line PSP discussion group (listserv).  It has been active now for just one year.  Penny Roberts, out of California, started it with the assistance of the Society for PSP (SPSP), and  John Hopkins Univ/ Mass Gen Hosp.

There are approx.(150?) homes on-line now, but many more people than that. People with PSP, Caregivers, family, and friends are all welcome.  We have  set up a digest mailing also for those who prefer their mail in a single block at a time, and are working on an archive.  Please join us, and help us help each other.

to subscribe to the PSP on-line discussion group,
address your e-mail to:

   [log in to unmask]

in the message space, just say:

    subscribe psp <your name>

Mary Helen Krane,
[log in to unmask]
 daughter and parttime caregiver to Sarah Cleveland
age 72, diagnosed 2.5 yrs ago with PSP.

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Date:         Sun, 7 Feb 1999 08:23:26 -0600
From:         Leo Fuhr <[log in to unmask]>
Subject:      Re: (no subject)
-------------------------------------------------------

Howard,

Welcome to the list family.  You will find here a forum for asking for and giving hellp and support to each other.  I try to live by the philosophy of the Serenity Prayer, asking God to grant me the serenity to accept what I cannot change, courage to change the things I can, and wisdom to know the difference.  Remember to be good to yourself, Howard, and I agree that helping others is important to living life well.

If you would like to learn more about me my webring site URL is <http://www.newcountry.nu/pd/members/auntie1.htm> thanks to webmaster Jerry Finch of this list.

Jeanette Fuhr 48/47/44?

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Date:         Sun, 7 Feb 1999 10:48:29 -0500
From:         "Martin K. Bayne" <[log in to unmask]>
Subject:      The Saga of "Howard Collins"
-------------------------------------------------------

Howard,

Your story of "CorticoBasal Ganglia Degeneration and Progressive Supranuclear Palsy" is quite interesting -- for those of us fascinated with the pathology of sociopathic behavior.

I'm curious, what is the motivation behind this fiction? (your AOL profile gives you away: "...been there, done that" under the heading 'married ' -- in your letter, you are happily married. And the tear in the eye of the neurologist was just too idiotic).

So what's the real deal "Howard;"  are you another David Berkowitz or Jeffrey "Hungry Man Meal" Dahmer wannabe, or maybe just a dweeby college student who can't get a date on Friday night? (personally, I vote for the dweeb)

Martin Bayne  [log in to unmask]

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Date:         Sun, 7 Feb 1999 11:59:54 -0500
From:         Jennifer Smith <[log in to unmask]>
Subject:      Re: The Saga of "Howard Collins"
-------------------------------------------------------

Dear Martin,

Excuse me for butting in, but I am curious on what basis you are attacking the validity of this man who has just joined the list?  Doesn't seem like much of a welcome.

Jennifer Smith

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Date:         Sun, 7 Feb 1999 09:25:15 PST
From:         Bob Chapman <[log in to unmask]>
Subject:      Re: The Saga of
-------------------------------------------------------

Marty I am curios too, in fact I am a little shocked. That doesn't seem like the "Marty Bayne" I have seen on this list for the last four years or so. You mention his AOL profile, I don't have access to that, at least as far as I know. Is there something you know about "Howard Collins" we don't, but should?

Love a good mystery.

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Date:         Sun, 7 Feb 1999 12:26:42 -0500
From:         janet paterson <[log in to unmask]>
Subject:      Re: The Saga of "Howard Collins" / AOL Member Profile
-------------------------------------------------------

hi all

for those with an investigative bent and without an aol account
here is "howard collins <[log in to unmask]>"
full aol member profile:

Member Name:      Mars.....
Location:         ...whever circumstances find me around houston, texas,usa
Birthdate:        gemini/taurus
Sex:              Male
Marital Status:   been there, done that....
Hobbies:          being happy
Computers:        yes ( traded in my abacus)
Occupation:       sure...
Personal Quote:   a stranger is just a friend whom I haven't met....

since the above is information
that hc9262 has voluntarily provided
for the millions of aol members to review
i don't think posting this is an invasion of hc9262's privacy

but maybe hc9262's posting to the pd list is an invasion of another sort?

janet

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Date:         Sun, 7 Feb 1999 09:52:26 PST
From:         Bob Chapman <[log in to unmask]>
Subject:      Re: The Saga of
-------------------------------------------------------

Do you think Howard's an Alien?
See what happens when you get on the WWW! :-) :-) :-)
Don"t flame me, I'm just joking. I love John's web page for Parkinson's.
I'm just jealous because I can't make one .

-------------------------------------------------------
Date:         Sun, 7 Feb 1999 13:03:36 -0500
From:         janet paterson <[log in to unmask]>
Subject:      Re: The Saga of "Howard Collins" / AOL Member Profile / hc
              challenge
-------------------------------------------------------

hi all

jeanette wrote to me privately
and i feel compelled to respond publicly:

At 11:42 1999/02/07 -0600, jeanette wrote:
>i guess i just assumed Howard Collins was telling the truth.  i'll let
>the list know what if any reply i get from "mars" in the future.  maybe
>he really wants to be a writer and has no raw personal life experiences
>of his own so invented some?

you and kathrynne responded immediately and warmly
[and i had put his message aside for replying to as well]

it can be embarrassing
to think we've been 'taken in' by a scam artist
but in fact the only person who needs to feel embarrassed
is the scammer

you and i and others assumed that hc9262 was telling the truth
as in "innocent until proven guilty"
not a bad way to look at life

i trust that this incident and others like it
won't sour anyone so much as to
change that viewpoint

this is why i suggested that hc9262's posting
might constitute an invasion

my thanks to martin brayne [whatta brain]
for 'sniffing' this one out
and so quickly

someone once said
we should learn to love our enemies as ourselves
and turn the other cheek 70 zillion times
or something like that

so hc9262,
if you are out there listening,
your 'joke' worked for a little while
but i wonder why you thought it might be 'fun'?

you are blessed with a talent for writing
why not try to use it for helping rather than hurting?
maybe an essay exploring your motives behind your message?
now that's something i wouldn't put aside!

janet

-------------------------------------------------------
Date:         Sun, 7 Feb 1999 13:09:09 -0500
From:         janet paterson <[log in to unmask]>
Subject:      Re: The Saga of / the invasion of
-------------------------------------------------------

hi all

At 09:52 1999/02/07 PST, bob wrote, in part:
>Do you think Howard's an Alien?
>See what happens when you get on the WWW! :-) :-) :-)...

i think you are right -
he is definitely an aolian alien!
but aren't all men from mars?

janet

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Date:         Sun, 7 Feb 1999 12:36:33 -0600
From:         "Charles T. Meyer, M.D." <[log in to unmask]>
Subject:      Re: (no subject)
-------------------------------------------------------

Janet Bob et al,

You guys did a great job. Outside of the extremity of his story I likely would have accepted it at face value.  And he wasn't even trying to sell something. What tipped you off and raised suspicions enough to check the AOL Profile?

Congratulations and thanks.  We certainly don't need to get caught up in "helping" a sociopath.

Charlie

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Date:         Sun, 7 Feb 1999 16:26:51 -0330
From:         Anne Rutherford <[log in to unmask]>
Subject:      the alien got me too!
-------------------------------------------------------

I suspect the  Howard posting was some sort of scam or a junvenile joke. If it was a real posting there would have been a thankyou for the friendly welcomes............... (mine among them)

Anne Rutherford

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Date:         Sun, 7 Feb 1999 18:07:11 -0500
From:         "Martin K. Bayne" <[log in to unmask]>
Subject:      Columbo Episode #143 - "The Case of Howard Collins"
-------------------------------------------------------

Let's put this one to bed once and for all.

(1) When I first read "Howard's" post, I considered publishing it on either my web site or one of the journals I write. (I must admit, it's a very compelling story)  Who was this "new member," I asked myself.

(2) Before I could publish it, I had to document the source -- hence the look at "Howard's" AOL profile, in hopes of finding a phone number, address, etc.

(3) When I read his profile, I realized that "something was not Kosher."  There were just too many inconsistencies for this one to ring true.

(4) I  wrote my post hoping to bring the story into the light of day -- perectly willing to accept responsibility if I had made the wrong call, with the appropriate retractions and apologies forthcoming.

(5) I then received a private Email from "Howard" that confirmed my suspicions. (I won't disclose the details as it gives me no pleasure to hurt or humiliate anyone -- in fact, the only reason I wrote my post in the first place was to give other list members food for thought before they 'invested themselves emotionally' with someone who may not be what they represent themselves as ).

Let's close the book on this.    Martin Bayne

PS> A few minutes ago I received the following Email from "Howard" himself

---------- Forwarded message ----------
Subject: Re: The Saga of "Howard Collins"
Date: Sun, 7 Feb 1999 17:38:54 EST
From: [log in to unmask]
To: [log in to unmask]

"Martin, you are obviously one of the few people in the world who think and gather facts before they respond.  For that, you have my vote.  It is indeed unfortunate that such a large segment of the populace has no opinion at all...:"
---------- End Forwarded message ----------

I rest my case. MKB

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janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
<http://www.newcountry.nu/pd/members/janet/index.htm>
[log in to unmask]