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. >