I loved Anna more today with this
disease and I loved him as much as I
thought I could before but I love him
and he wants me to go and get a weekend
away and I think but I want to be here I
want to be here with you take care of
you about four years ago we had gone to
Sedona and we had gone about two and a
half miles into a 10-mile hike and my
right foot just I kept tripping I said
something's wrong with my lake so my
wife and I saw a neurologist and he ran
some tests and he goes you have a motor
neuron disorder it's called
ALS it's called Lou Gehrig's als stands
for a amyotrophic lateral sclerosis it's
commonly in the United States known as
Lou Gehrig's disease and it's a disease
where the nerve cells that control
voluntary muscle movement die for
reasons that we don't understand I went
from my cane
to my Walker to my wheelchair my arms
are going right now in my hands they
could stay like this for a long time
they could be gone tomorrow
I lost 30% of the my lungs ability the
lungs were fine
it was the muscles on the outside the
muscles have been impacted by the ALS
it's terrible disease because it is a
relatively rapidly fatal usually within
3 to 5 years sometimes faster just as
with Alzheimer's disease and
Huntington's disease in Parkinson's
disease we have virtually no drugs that
change the course of the disease and so
it's it's really a terrible situation
and these people face a very difficult
road forward there there is incredible
research taking place right now dealing
with ALS I'm very thankful that it's
taking place it will benefit down the
road for people I'm sure they will find
a cure stem cells will be a benefit for
ALS of a number of different
waise the way we're using them in our
serve disease team grant is to generate
from human embryonic stem cells a cell
type that lives in the neighborhood of
the cells that die the motor neurons
that die in Lou Gehrig's disease and to
transplant those into the spinal cords
first of animals and then ultimately of
people to try to provide a better
neighborhood for those motor neurons so
that they don't die the SERM ALS disease
team has the goal of initiating a
clinical trial four years after the
launch of our project which was a few
months ago it's a sufficiently
complicated project that multiple things
are happening simultaneously and then
have to merge into a common path you
want to do it properly so that when you
treat your first patients you're not
gonna make them worse or you're as sure
as you can be there's no guarantee and
that you have some chance that you'll
help them or other patients you test
down the line for 31 years we've been on
our honeymoon
and this caregiver
been there the whole time does a super
job I have a great life I do have
friends I have a wonderful wife and
children grandchildren I can't do
everything I can't get down on the floor
with my grandkids but I have the joy of
the fact that I used to be able to get
down on the floor there's so many things
we can do don't look at what you can't
do look at what you can do and you enjoy
today
you