----- Original Message -----
From: "taglientijohn" <taglientijohn@...>
To: <hydrocephalus@yahoogroups.com>
Sent: Wednesday, August 16, 2006 5:08 PM
Subject: [hydrocephalus] Hello, new member here!


> Hello,
>
> My name is Thomas, I do not have Hydrocephalus, but my brother John
> does.

Maybe he should join this list. The more the merrier.

> He's 39 now, and he's had the shunt since he was 8 years old.

Hey! Someone my own age. That's so awesome!

> Anyway, I am very concerned about him and he gets lonely quite a bit.
> I was wondering what besides chatting (which I'm going to get him to
> do), could my brother do to get out and meet people, possibly who also
> have hydrocephalus. We live in Long Island New York and I wonder if
> there are any clubs or meetings.

Funny thing you should mention that. There was a mother out in the Richmond
Hill area of Queens that had a support group. I exchanged letters with her
for some time many years ago. Her younger daughter has hydrocephalus, and a
rather severe case of it. She seemed to appreciate talking to somebody
considerably older than her daughter who could relay experiences of growing
up with hydrocephalus. She had introduced me to her other daughter, the
older sister (too bad I don't remember names well) and we exchanged letters
for a time. She eventually stopped writing. But that was my experience with
corresponding to someone in the NYC area. Many a time have I found myself
lonely without a friend in the world so I know it's great to be able to
connect with peers. I can't say with any certainty what's in your area now.

You can also try looking up SBAA or Spina Bifida Association of America in
your phone book. You see (and to those who may not know) spina bifida is a
more serious condition damaging the spinal cord to varying degrees depening
on the person, which occurs only at birth (well -- BEFORE birth but that's
being nit picky) but in an estimated 80% of these children, hydrocephalus is
also present, so groups with the "spina bifida" label usually include
support for hydrocephalus. Sorry I can't be of much more help but I hope
that perhaps this will give you another lead.

-Sean
(Ontario Canada, never been to NYC)