Hi everyone,
I've been reading all your messages for several months, have
added a few of my own, received a few personal messages, etc and just
wanted to tell you how important this list is for patients and
caregivers or family members. It gives us so much information and
experiences that other people have, that it provides a sense of
empowerment to each of us. I am convinced that this is essential in
dealing with this disease. If we feel informed about treatment,
learn from others experiences, and evaluate new therapies, we are
less likely to feel victimized and more in control of our lives.
I think everybody's greatest fear is the loss of control and the
inability to care for oneself.
Some of the recent stories on this list about elderly patients
with poor medical care really touched me. We must prevent this
from happening by being/staying involved and active in our own care.
We cannot leave it totally up to the 'professionals'. They don't care
about us as much as we have to care about ourselves. We cannot feel
in control of our lives if we think we are only victims, and not able
to lead as normal a life as possible.
So far, my husband Stan and I have been able to do this most,
but not all the time. We still travel (with wheelchair) and try to
lead a normal life, with adjustments for PD when necessary. We feel
in control of our lives, but still have down moments when we cry
together.
Next week we are traveling to Emory University in Atlanta for
a consultation/evaluation for a Pallidotomy. Stan is very nervous
about the possibility of surgery, but first we get information, and
take it one step at a time! Wish us luck.
Regards,
Susan Hamburger ([log in to unmask])
