All about Guillain-Barré: Report on the 2005 GBS conference in New Zealand

The Guillain Barre Syndrome Support Group New Zealand Trust has just held its second conference on GBS in April 2005. The conference was held in Wellington and 100 people were present.

We had a number of guest speakers. The first was Dr Gareth Parry, Professor of Neurology at the University of Mineapolis USA, who brought us up to speed on current practices in treating GBS, CIDP and MF; as always, a great speaker!

Grant Watson (Wattie) was next, he is a NZ Physiotherapist and ex-GBS sufferer who travels the world speaking on back pain and skeletal problems. He based his presentation on a power point documentation of his own experience with GBS, with a few funnies thrown in. It was a really honest and true record of GBS. A fantastic presentation!

After that, little eight-year old Courtenay Bryant who had written her own story about having GBS last year, and now read it to us all. I don't know if you have seen the UK booklet called 'Jenny's story', but I sent her a copy of that when she was sick. Once she improved she decided to write 'Courtenay's story' along the same lines, and she got up and read that at the conference. Her nana went up with her and it went very well.

Then we had Mr Bryan Stuart, who told us of his experiences as a husband of a Miller Fisher Syndrome (MFS) sufferer. He was a school teacher and is a very good speaker. Again, some funnies and some serious stuff, and he got the balance exactly right.

Finally, Janet Leatham, Psychologist from Massey University, spoke on the psychological aspects of trauma. An informative presentation!

A lot of information, detail, helpful advice was tendered, and a lot of light hearted experiences portrayed. At one point the whole lot broke off into breakaway groups based on regions they came from, and they had about an hour and a half for group discussions. That was a real winner, and there was a lot of feedback from that.

At the last conference we had a medical panel set up and anyone at all could ask questions from the floor. This time, we set up a box for anyone to post their questions - annonymously if they liked - and they would be answered by the panel. This worked fine..... and the little tupperware box I put there for the occasion was pretty full by the time question time came round. Many people were happier putting their question in print, and any somewhat sensitive subjects could also be covered annonymously this way too. That was an idea we will do again next time.

We had a raffle too. One of the CIDP ladies made a knee rug out of patchwork and we had that as first prize. Second prize was a couple of bottles of wine donated by our Secretary, and third prize was a petrol voucher given to us by one of our members as a donation. We had a lot of fun bidding for these items.

A few days before the conference our President Terry Watson e-mailed me and said he had a good idea for a fundraiser on the night....... could raise $800 or so. That is all he told me.
He arrived at the conference with his hair dyed red......really red!!

It was later revealed that, no - it was not a midlife crisis, but he had done this as a fundraiser! The idea was to raise enough money to have it shaved off - and the person that pledged the most money could have the honour of shearing it off. This turned out to be Dr Parry, and it was hilarious! He got the job of shaving Terry's hair off (just to No. 7 comb......orders of his wife Diane). It was one of those things that everyone got in behind, and ended up raising us $1000. Good effort Terry....well done!

I went back into the room later that night to pick up a few things and the conference organisers were standing around trying to work out what on earth had gone on in there with all this hair on the floor - so I told them. They had a good laugh....

We had our AGM on Sunday morning then came on home. We left Wellington about 11.30 and stopped at Foxton for a pie, and at Wanganui for an ice cream and at Hawera for petrol, but otherwise came right on home (New Plymouth) without any major stops. We got home about 4.30.

All things considered it was a truly great conference. I have had a few e-mails saying they enjoyed the conference and can't wait for the next one. We have decided to do it all again in 2007 ....... same venue ...... same format ........ same weekend in April, 2007. Inquiries at: jenny.gbs.nz(a)clear.net.nz

Jenny Murray
05.2005