the Epilepsy community is I think a unique community I'm going to
talk for a minute about my my son's personal story in a minute but
we get introduced to epilepsy by somebody that you love or yourself
finding out that you have epilepsy and it's a very challenging condition it's
it's one where there's a unique uncertainty that lives with you forever
as long as you have epilepsy and it lives with the people who are around you
uncertain about what to do to help you uncertain about your condition and how
you will do on any one given day and that's uncertainty creates a great need
in all of us to get together and I think that's why a meeting like this I think
that's why it's wonderful we have the affiliates like the Northern California
affiliate places where people can gather in community to talk about their story
and to lean on each other because when you live in a world of uncertainty you
need to lean on other people both for hugs for advice and for hope and and so
I think that's why this day is extremely important and it's it's one that the
Epilepsy Foundation probably likes us as much as any day that we have in the year
I my personal story was and like if you went back two years ago when when I was
here at this Community Day our situation was a very different situation than it
is today my wife Terry is sitting out there to my
right maybe your left looking at me and when we were here two years ago our son
who had started having focal seizures when he was about eight years old and
generally was very fortunate that he lived I would say a relatively normal
life outside of the issues of the side-effects of some of his medicine had
gone to college had done reasonably well but his seizures began to get worse and
he went began to go from having the focal aware were simple partial seizures
to complex partial seizures in focal unaware where his head would turn and it
would be a little bit more in but in general he was still living a
relatively normal life and then at age 25 so two years ago
two and a half years ago he started to have grand mal seizures and it was
unique for him he had never he had had one earlier in his life but he had
generally not had grand mal seizures he hadn't as he said later had seizures
that made him feel disabled he had one in a train he had one in a train station
he hit his head in the bathroom and had concussions you know things that we as
parents had not experienced we had not experienced that part of epilepsy I had
been on the board of the Epilepsy Foundation for four years at the time
and but that aspect that end of the spectrum of epilepsy had not been
something we'd experienced where you go to bed at night
and you are praying that the next morning your child will be awake alive
you every time he calls on the phone you are nervous that he is calling to say he
just had a seizure he had just gotten engaged at the time and every phone call
that we got from his fiancee we knew was something bad had happened so our world
had changed and it was very difficult for us and I got to experience the
uncertainty and pain that I had heard from so many people like you all and
from people on our board who had had a very difficult time with epilepsy
the story continues until we were fortunate that we had a doctor who thought that
maybe he would be a good surgery candidate even though his MRIs were
clean even though his EEG externally were not really that differentiated
except to say that it was on the left side of his head and they did an
intracranial EEG about a year and a half ago and they concluded that his seizures
were all coming from one spot and they thought he was a good candidate and so
again that's a technology the intracranial EEG that he uses something
that's relatively new in the last five or ten years so it's a technology and
those types of technologies are here to help people who are
living with epilepsy today so he went in for the surgery about 16 months ago
and we did talk to him this morning and he is still seizure free and and so we
are in a very different place right so my wife and I we we don't wake up every
day you know it takes a while to adjust and to feeling and again it's still an
uncertain time it's been a year and a half you know he's still on one of his
medicines and you know we still don't fully know whether they took out the
full dysplasia whether there's other dysplasias that medicine controls so we
have a little bit of uncertainty but a great deal of the uncertainty has left
and we are extremely thankful and grateful because we would never have met
the doctors who helped him if we had not been in this community