It was January 1997 when my sister Dulcie (63 yrs old)
complained of tingling in her thumb.
The following day she complained of tingling in her feet,
and before the week was up she was in Hospital with a yet
undiagnosed condition. Her weakness progressed and her speech
became blurred and finally a lumbar puncture was done and
the diagnosis of Guillain Barré Syndrome was made.
Shortly thereafter her ability to breathe was compromised
and she was put on full life support and airlifted to Waikato
Hospital (an hours flight in an Iriquois helicopter) to
a high dependency Intensive Care Unit. She was fully ventilated,
and her paralysis progressed until just the ability to open
and shut one eyelid was all there was.
Having been given the name of her condition, Guillain Barré
Syndrome, was a help. At least a positive diagnosis had
been made, but that meant nothing to us. A search for information
began. I decided to put an article in a National Woman’s
magazine called “Woman’s Day” asking for
anyone who knew anything of this condition to contact me.
In came the replies. First one or two, then more, and eventually
there were 37 of them – all having had, or known someone
who has had GBS. A whole lot of information was forthcoming,
but there were those who contacted me who had experienced
the condition some years ago but still did not understand
what had happened to them. They knew the course the illness
took, the residual effects etc but did not understand what
had caused the condition in the first place. One of those
replies mentioned that there was a support group in America
so I made some inquiries.
From there I got a lot of information and was able to pass
this on to both our own family and to the families of those
who had written to me. The support network had begun and
I applied for funding from the National Lottery Department.
I needed three persons, and a formal group status, in order
to get funding so asked Dr Robert Gregory and Mr Terry Watton
to help out. They agreed, we got our first lot of funding,
and since then it has grown.
Meanwhile, within five months Dulcie was discharged from
hospital. Within the next five or six months she was almost
back to normal. She still has some residual problems with
her feet, and some other very minor nuisance- value residuals,
but for the main part is living a normal life, driving her
car, holidaying, and has put GBS in the past and got on
with her life.
As for the support network, for the first couple of years
the structure was a bit ‘loose’ and then the decision
was made to form a Trust. One of the persons I had contact
with, was a GBS sufferer a few years ago, Sir William Birch
(ex Politician) who graciously accepted to be our Patron;
Mr Terry Watton took on Presidency; I took on Secretaries
position and the very valuable input of Dr Gareth Parry,
Neurologist then based in Auckland but now back in the USA
was accepted willingly. The Trustees are a mix of ex sufferers
of GBS and CIDP and of interested parties (caregivers and
academics) who each play a valuable role.
We have had a lot of help along the way to our present
situation. We were helped to get our handbook produced by
Dr Joel Steinberg (USA), and had information forwarded to
us from both GBS International and GBS United Kingdom. Both
Estelle Benson and Glennys Sanders have been very valuable
in their untiring support, especially in the early days.
Today we have 359 suffers registered with us, and know
we have only really scratched the surface of the sufferers
here in New Zealand. By far our biggest struggle is to get
the hospitals and the medical personel to pass on information
about our support group to those newly diagnosed. If we
can get in at any early stage and help those families affected,
then we know we can offer valuable assistance.
We have organized the first ever New Zealand National Conference
on GBS for Anzac weekend 2003 (April 25-27) and had Dr Parry
attending from the United States, plus other Neurologists,
physiotherapists, and overseas chapter liaisons. The conference
was very well attended and was a huge success!
A lot has happened step by step since 1997, and we look
forward to further progress in the future. If anyone is
reading this and considering setting up a chapter then please
do. It is a lot of hard work, but when you see somebody
being helped through ‘the mist’ that they are
in when a loved one is newly diagnosed, then it is all very
worthwhile.
Support is out there from our groups to help you as we
were helped, to set up a valuable lifeline to those unfortunate
enough to have GBS or CIDP cross their paths.
The easiest option is to sit on our hands and do nothing,
but with a little effort and patience, so valuable an organization
can be put in place.
Jenny
2003
