Subject: David Boots
TO: David
I needed that. There is nothing like a sobering minute. I give a lot of
credit to those who do not have a care partner. Doing everything yourself
and not having someone there when needed, both physically and emotionally
is difficult. There has always been a need for strong support of our single
members in the PD community.
As to the incident on the front porch, don't think of it as peeing on
oneself, think of it as "Whissing on the World". I don't know anyone with
PD or a carepartner who didn't at some point want to "Whiss on the World".
There are three centers in the US that I can recall performing fetal tissue
transplants. They are U. of Colorado (Dr. Curt Freed), Good Samaritan
Hospital (Dr. Jacqus) and somewhere in MA where they are doing the pig
fetal tissue transplants. Outside of the US, there is Cuba, Sweden and China.
Obviously fetal tissue transplant, pallidotomy and medications will not
give you a new mid-brain. They can buy some time.
I have this dream that something will happen by the end of this decade. Two
years ago, I had doubts anything could happen this soon. Today, the
scientific knowledge is growing exponentially. I have great hope now that
science will break the code by 2000. In the mean time decisions will need
to be made on how to buy time.
One of the best ways to buy time is to be active. This means to get
exercise, get out in the public and be a part of life. Looking inward for
strength is like peeing on oneself. Looking outward and being a part of
life is like "Whissing on the World". It gives purpose to life.
One of the problems of being 37 with a chronic illness is that all your
friends are building their lives, advancing careers, and the last thing
that is on their mind is the possibility of chronic illness. They are the
ones who will often say "When things get really tough, give me a call." They
have ecome "bad weather" friends. It is a sad observation on society. You
need to make new friends, which means becoming a part of different groups.
This is not easy and requires a lot of effort on your part. Everyone I
know who has done this, has found it very rewarding.
Suggestions on where to look depends on your likes and dislikes. Music is
a wonderful part of your life. You may find playing in a blue grass band is
too taxing. How about using your music leading singing at support group
meetings? There are many places you can use this talent to make people
smile, clap their hands, stomp their feet and make their heart young. In
our phone call I asked you to start a support group for young people in Santa
Rosa. This you agreed to.
It really pays once in a while to wear your heart on your sleeve. This
email support group really responded to your tears. There are people who
care about you, David. Thanks for crying out, for now the healing can
start. I really enjoyed our phone call.
I have known David since about the day he was diagnosed with PD. David can
express emotion, something the males in this world need to learn. He has
fought ADA with his employer, be participated in the Washington Forum
recently on the Udall Bill. I think the assistant in Sen Feinstein's
office will never forget David.
Hang in there David, we care and are there for you. Thanks for waking us
all up to the emotions of PD. I needed it and I am sure others did also. We
will keep in touch.
Regards,
Alan Bonander
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John Cottingham
