Dear Kathy:
I thought I remembered there being support groups for Progressive
Supranuclear Palsy (PSP) so I checked my files. Sure enough there are
several groups out there devoted to PSP as well as some info on
current research. So as not to use up space here on the list, I would
be happy to email you the information I have if you will supply me
with your email address.
Sylvia Dickinson, R.N., M.S.N.
Coordinator, Rare Disorder Network
GCRC, Vanderbilt University Medical Center
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Ive gotten only error messages in past after composing
wonderful, detailed intro...so this a short & sweet "just
the facts" test.
My name is Kathy Igou.I live in Atlanta, Georgia and my Dad
(65 yrs, from Columbus, Ga) has been diagnosed with
Progressive Supranuclear Palsy (PSP)- a Parkinson's plus
syndrome which has many symptoms of PD (except for tremors)
but does not respond to Sinemet & like drugs.
He is being treated by Dr. Wats at Emory in Atlanta.
He was diagnosed 3 years ago and the disease is slowly
progressing-which I understand makes us more fortunate than
most PSP patients.
I've been lurking since April and have received excellent
info as well as inspiration & ideas from the group.
Dad's last Dr. appt. was the best exchange of info we've had
because we were better educated about the drugs,
terminology, and current research. For once, Dad, my mom, &
my 3 sisters felt "proactive" about our family challenge.
Does anyone know of others with PSP? Since April, I have
only been able to connect with one other PSP family-from
Canada.
Our Dr. is treating only 40 PSP patients in his clinic and
our Canadian contact knows of no others being treated by the
17 neurologists in her area.
Because PSP is relatively rare, there is no support group,
newsletter, etc. I am hoping that other PSP patients may
have joined this group as I did, hoping to find others
within the PD family.
Dad was thrilled to learn of our PSP contact...as was my
mother who is looking forward to sharing treatment info as
well as dealing with the day-to-day progression.
Thanks again to all of you in this group. This is an
inspiring group...no "pity party" types...and I just know
that parkinson's does not have a chance against such a
dynamic group!
So much for "short & sweet". Hope this goes through.
Kathy Igou
Atlanta, Georgia
