September 2016
Volume: 5
Issue: 2
GBS/CIDP
GUILLAIN-BARRÉ SYNDROME
CHRONIC INFLAMMATORY DEMYELINATING POLYRADICULONEUROPATHY
Our Chair Mark, in the chair, receiving IVIG at Westmead Hospital.
Greetings one and all. Spring is here and my CIDP hands and feet are just starting to
thaw and I hope those similarly impacted have had the opportunity to get out into the
sunshine, relax, smell the flowers and try to put their GBS/CIDP concerns aside.
Personally, at the end of winter I feel a bit like a bear coming out of hibernation, casting
aside the heater, ugg boots and doona. Having said that I am acutely aware there are
many who may be in hospital, rehab or recovering at home etc. who may
not yet be in a position to readily get outside and out and about. Hang on
Next Meeting:
to those thoughts, you can get there. With the support of family, friends
Saturday 5th November 2016
and the GBS Association many things that now seem far away will come
closer in time and even small steps along the road to recovery are a cause
'Susan Schardt Conference
for celebration.
Neither GBS nor CIDP should define us; it is how we approach the illness.
Focus on the ability and not the disability. We all age and as we grow older
there are many things our bodies no longer do as well or may be not at all
yet we have a wealth of lived experience. Conversely, the younger amongst
us appear to have boundless energy but little common sense. Many of the
older generation bemoan the onset of Gen Y and what the future holds
when they reach the heights of decision making. Despite this often stark
contrast each and everyone one of us has something to offer and if we
have an open mind, we can always learn new things from both the young
and old amongst us.
GBS/CIDP can strike at any age and is a steep learning curve for those
impacted. For some it is a brief interlude in an otherwise healthy life yet for
others the impact can be profound. In any event the GBS Association has
been there for many years and with the generous donations that have been
forthcoming, for which we are immensely thankful, we will be able to
continue to support those who reach out to us for as little or as long as
needed.
At the time of this edition of Recovery we are in the process of donating
$15,000.00 toward the purchase of a FEES (Fiberoptic Endoscopic
Evaluation of Swallowing) machine for Ryde Hospital.
Room'
Level 1, Ryde Rehabilitation
Centre Sydney
235 Morrison Road, Ryde
9:30 - 11:00
Committee Business &
Administration
11:00 - 12:30
Open Forum for members &
family and/or Guest Speaker
Visitors are welcome to attend
both sessions or the Open
Forum only if preferred.
Continued page 2
In This Issue
Page 2: About Fees and the
GBS Patient
Page 7: Feedback
Page 4: My Story ‐ Pauline Ralston
Page 6: Vale Forbes Carlile MBE
Page 8: Back Page Bits ‘n’ Pieces