Thanks Perry, I've missed being there among you folks.  Is there a
meeting on the 19th?

Terry Brennan

> ----------
> From:         Perry D. Cohen[SMTP:[log in to unmask]]
> Sent:         Thursday, February 12, 1998 10:24 AM
> To:   Multiple recipients of list PARKINSN
> Subject:      What Good Is A Support Group?
>
> The following story appeared this month in the newsletter "Well
> Informed"
> for our National Capital Area Chapter of the APDA.  I was especially
> moved
> by this exceptional story, so I wanted to share it......
> Perry Cohen
>
> *******************************************************
> What Good Is A Support Group?
> By Lee & Janice Himes
>
> If you're like me, or my wife, Janice, you may have wondered the same
> thing. We're not the kind to go in for any of that "touchy-feely"
> stuff if
> that's what it turned out to be.  Nor were we keen on getting tied up
> in
> anything new, so hoping to find it would prove to be of no real
> benefit or
> interest to us, we decided (after talking to Perry Cohen who leads the
> Young Parkinson Group) to attend just once, at least, to check it out.
> Little did we suspect at that time, that this would change the
> destinies of
> both our lives... in just one visit. Or what a dramatic impact this
> small
> reluctant decision would have on both our lives.
>
> We attended our first meeting in June. We didn't know anyone there.
> No one
> there knew us.   We were completely unaware that it was meant for us
> to be
> there that night.  After the program ended, Ben Bandy, a man on the
> opposite side of the room, crossed over straight to Janice.   Why he
> singled out my wife from amongst a room full of people that evening,
> we
> didn't know.  He told us of a study being conducted by Dr. Stephen
> Reich at
> Johns Hopkins that my wife, newly diagnosed with Parkinson's, might
> want to
> consider participating in as a subject, and he gave us information
> about
> who to contact and generally what it involved.
>
> My wife dismissed the idea of participating in the study because it
> meant
> driving all the way to Baltimore and back on several occasions for at
> least
> two days of numerous medical tests.  She thought she had better things
> to
> do. We were busy planning and preparing for a six month cruise to
> Florida
> and the Bahamas on our sailboat.  A month passed.  We went to another
> meeting of the support group.  Ben didn't attend that one.
>
> In August I decided to cancel our cruise to the Bahamas, due to
> commitments
> I had made concerning my work.  My very independent, very busy wife,
> had an
> inspiration.... "Though it won't help me, it might help someone else,
> someday, if they learn something from the study. Maybe I will call to
> see
> what's required of me to participate."
>
> The first test was a CAT scan of the brain.  It showed a massive brain
> tumor in the center of her brain, intra-ventricular, located at the
> foramen
> of Monro, (in the very center of her head)  threatening to cut off the
> flow
> of the cerebral-spinal fluid within the brain.  It needed to be
> removed as
> soon as could be scheduled.  My wife had not the slightest symptom to
> indicate she had a large tumor in her brain.  We did not have a clue
> that
> it was there. It turned out to be non-malignant and about the size of
> a
> lemon.  After the 10-hour surgery, the surgeon remarked that it had
> grown
> so extensively, that had it not been removed when it was, she would
> not
> have had much time left before a major event (tragedy) would have
> occurred.
>
> Janice is doing fine now. You would never know she'd had any surgery.
> To
> look at her, you would never guess she has ever attended any kind of
> "support group" for anything.  But you might not be looking at her
> now, or
> reading this newsletter entry, had she not at least gone once just to
> check
> it out.  As it turned out, we couldn't have afforded not to find the
> time
> to attend. You never know when it just might just save your life.
>
> When Janice and I review the events that have transpired, our faith
> tells
> us that the Lord had to be guiding us all along the way.  What if the
> support group had not been formed?  What if we had not talked to Perry
> Cohen?  What if we had not gone to that first meeting?  What if Mr.
> Bandy
> had not been there? What if he had not bothered to go to Janice and
> describe Dr. Reich's study? What if we had gone on the cruise to
> Florida
> and the Bahamas?  What if Janice had decided not to participate in the
> study?  What if .....?
>
> Thanks Ben.  Thanks for attending that night. Thanks for taking the
> initiative and speaking to Janice about the work going on at Johns
> Hopkins.
>  Thanks PD support group.  Don't know where we'd be today had you not
> been
> there.
>
> Janice's surgery was October 29th, 1997.  Janice and I attended the
> meeting
> on December 18th.  An unsuspecting Ben was there this time.  It was
> only
> our third time to attend.  I couldn't wait to tell all that had
> happened
> since the last time we had seen these folks.  We wanted to say thank
> you to
> them, and to Ben especially, for the difference they had made.  A big
> difference to my wife, to me, our children, grandchildren, and
> extended
> family and friends.  Within a minute or two of our having related this
> to
> the group, Susan Hamburger hospitably produced a bottle of champagne
> and we
> made a toast to the group, the extraordinary good that had come of its
> formation, and the new year ahead.
>