Newsletter September 2007

President's Paragraphs

September heralds spring, blossoms, longer days, and warmer temperatures. It got me thinking about the advent of summer and the joys that that season can bring. That led me to contemplate the joys and power of the GBS/CIDP fraternity and the look in a patient's eyes when you meet them in hospital and say "I've been there, I understand." It is a moment of powerful bonding that cannot be shared with anyone else. Two GBS or CIDP people who connect through a powerful shared, intensely personal experience, gender or age being irrelvant. And the fraternity is universal.

Out of the blue I received an email from a chap in Brisbane who had read something I'd written, so he made contact. We exchanged several emails and he's invited me to visit him next time I'm in Brisbane. At the same time I've been emailing a woman in Brisbane who has been in intensive care (with GBS) for a long time. I've never met her but I know her sister through going to some conferences and I've provided some support to the patient and the family from a distance. I'll meet them too, next time I'm in Brisbane.

When I attended the GBS/CIDP conferences in America I was struck by how willingly people shared their stories about what happened to them and how various support people provided them with the strength to "hang in there." I met people from all over America, Canada, South America, England, Germany, Holland and elsewhere and the message was the same...meeting another GBS/CIDP person makes a difference.

My point is the support we provide for patients and care givers cannot be measured in dollar terms or indeed in medical terms but it is invaluable to recovery and well-being. So "hang in there" and reflect that what you do providing support and information is a gigantic contribution towards a person's recovery.

And summer is coming.

Bob Stothart
President.

Terry’s Garden tips.

Early Spring is a great time to get your flower beds and vege patch sorted for all those wonderful summer colours and flavours. An important thing to remember is to treat your plants as you do yourself. Far too common we put some nice plants in the garden with the promise of what they will produce, but then we leave them to fend for themselves. If you regularly feed and water you plants (I am not suggesting you do this 3 times a day as you would for yourself) then you plants will grow and produce as you expect them to. Fertilize the ground with sheep pellets before you plant, feed them every 3-4 weeks and water when required and you will get great results.

MASTER TIP: As your fruiting plants like strawberries, tomatoes, cucumbers, blue berries e.t.c. start to have fruit set on them give them an extra dressing of Potash fertiliser. This will enhance their flavour and make the plants stronger.

All the best with this

Terry Watton
Paeroa Garden Centre
A GBS overcomer

Neurological Foundation’s Fund Raising Campaign

The Neurological Foundation has raised over $3,000,000 to endow a Professorship in Clinical Neurology at Auckland University. Four Million is the target (contributions are being received all the time) as this will provide for a Professor, a Research Fellow and a research fund. The Guillain-Barr Syndrome Support Group New Zealand Trust has contributed $1,000 towards this significant development. A chair in clinical neurology will have immense spin-off for patients with all variations of neurological disorder and we have been pleased to be associated with this development.

Anyone wishing to contribute to the fund raising may do so by writing to:

The Neurological Foundation,
P.O.Box 110022,
Auckland Hospital,
Auckland 1148

Secretary’s Section

I’m writing this sat by the pool of the Royal Meridian Hotel in Dubai – en route to the UK for a family wedding. Sounds pretty exotic doesn’t it until I tell you that yesterday it was 41degrees C – which is like living in an oven and its going that way again today! and the whole area is in the grip of a sandstorm.

Even though we spent 7 years in Egypt Vivienne and I always had a hankering to visit Dubai ( one of the smallest but richest of the Gulf countries – they don’t have any oil to speak of but make their money from trading, banking etc. It’s a far cry from the poverty stricken population we knew in Egypt!

Dubai is a strange place – a “luxurious building site” where records of “biggest”/”tallest”/”grandest” are the norm BUT our super luxurious hotel is surrounded by fast rising office blocks- even more luxurious hotels and even bigger shopping malls and an absolute forest of tower cranes – Vivienne counted 70 from our bedroom widow which looks out onto Palm Island – one of 3 such artificial island being dredged from the sea and edged in huge rocks brought from a neighbouring state and dumped into the water with a huge roar – 24 hours day and night!!

But the locals ( just 800,000 of them) don’t seem to mind. They are all apparently well off and frequent the many designer shops in the dozens of Malls in the city and beyond whilst all this building frenzy – and the fantastic service we are receiving at the hotel - is carried out by the 3 million foreign workers who run the place – yes 3 MILLION!!

So what do we think of it? …….3 days will do fine, then onto the UK to attend the wedding and back to NZ just as fast as that plane will carry us!!

I was more than a little apprehensive that Dubai’s heat would exacerbate my residual CIDP problems – particularly what I call the “rubber dolly” effect that a hot bath can have on my muscle control.- (Do any other CIDP’ers experience this?) In fact I have not encountered any problems in that respect – what did have an impact was the 19 hour flight from Christchurch in a seat that defied “napping” let alone sleeping! I got off the plane “all a quiver. I do have a continuous slight hand tremble – a pretty standard residual I think – but at 0530 in Dubai airport I was definitely in a “shake rattle and roll” mode. Fatigue is a VERY definite (but often “unsung”) residual of GBS certainly for me and I suspect of lot of you and it was good to hear at the Conference that there is a growing body of research into this area of post GBS effects.

So the Black Boat didn’t win the Americas Cup, but I think gave a pretty good account of themselves and had more than a fair share of bad luck – but that’s sailing!. Probably in the end they were beaten by a bigger cheque book. If I’m honest I quess I feel a little guilty as a “new kiwi” about our country’s stated intention to have another go at the Auld Mug. Even though sailing has been the love of my life ( after “her indoors” of course!) I can’t help wondering if the money involved couldn’t be better spent elsewhere. Yes- I know if the cup does come back to NZ it will do wonders for the economy (well Auckland anyway!) but that all seems a little “ethereal” compared to the here and now plight of those stuck on our shamefully long hospital waiting lists for want of more qualified medics and equipment. Which brings me to the Chair!

Those of you who are members of the Neurological Foundation of NZ will already know that they are funding the establishment of a Chair of Clinical Neurology at Auckland University. Your Board – enthusiastically encouraged by Gareth have made a contribution from our Reserves to this fund as we believe that anything that can further the understanding of neurological disorder such as ours is worthy of support: and, by the way, those of you who use Xtra as your internet provider and who have suffered (in my opinion) the DOWNGRADE in services brought about by Xtra’s link up with Yahoo have the chance to vote for a donation of $250,000 to your favourite charity. Yes- I know which is the obvious one but realistically there are not enough of us to win that vote so how about casting a vote for the Neurological Foundation?

In July we spent a month in Canada, including two weeks in Vancouver getting “re-acquainted” with my sister. We have seen each other pretty much yearly for the past ten years but an ailing Dad or Mum was always first priority. With both now gone, it was good to spend time with a less stressed out sister and talk about her future visit to NZ – but strange to remember that statistically “I’m next”!! I’m not a good book reader ( Vivienne devours them) but whilst in Canada I read and enjoyed Gareth’s new book on GBS. I wish I had access to that volume of easily assimulated information back in 2000 when I first met GBS. If you have not read it yet contact Jenny and she may be able to arrange another shipment from the States – or borrow or steal a copy from a fellow sufferer!.

Our application for registration to the new Charities Commission has gone in and so far all is quiet so its probably going to be OK – although no reason why it should not be. The main advantage for us will be to maintain our tax exempt status and give us recognised credibility as a charity to potential donors. I suspect that before too long if you are not registered your chances of getting money from the likes of Lottery or the Canterbury Trust will be slim. The next task is to get the Board to "sign off" on our updated Trust Deed. The AGM delegated them the authority to do this. And then I shall have to “gird up my loins” and have another crack at revising our web site to include all the latest relevant information of interest to us and new visitors to the site. It is not something that comes naturally to me and I envy the skills of those ( usually younger) beings that handle this digital age with ease. I guess we have to face the fact that in general such things are never going to come easy to us 60+ year olds. As I write Vivienne, who is sat on the sun bed beside me, is nearly exploding with exasperation as she tries to decipher the “geek speak” in the 160 page instruction manual for the pocket size digital camera she has just bought!

Before I rush off to get “she who will be obeyed” another orange juice ( in truth wave my hand at the waiter!!) Vivienne has just reminded me that today is the anniversary of 9/11. One ( and admittedly only one) of the reasons I came to New Zealand ( after Jenny had persuaded me that you guys really did know about GBS and had the resources to treat it!!) was to live in a country where I could feel more secure – strangely nearly half a world away and potentially in the “midst of it” I feel the same is true of Dubai. There is a lot of grief out there but it does not seem to have effected – or is expected to effect - this little enclave. BUT, front page headlines in the local paper, The Khalees Times, a day or so ago was the headline “ALL BLACKS TOO GOOD FOR ITALY” – a good start lads lets hope the roll continues.

Take care, its getting warmer and summer’s “a comin” – so, of course, are the weeds, grass mowing and bugs on the roses but given what we have all been through I guess we can live with them!

Tony

And Tony has provided us with a funny….

A young blonde girl needed to make some money so decided to set (I have a little space left – am I allowed to tell a “blonde” joke in this) herself up as a painter – she knocked on the doors of several up market homes offering her services and eventually one owner agreed she could paint his porch. A price of $50 was agreed with the owner supplying the paint and equipment. On mentioning his arrangement to his wife she was surprised at the price and asked if the blond realised that the porch went right round the house – Oh I am sure she does said the man as she was standing in it when we struck the bargain. Shortly after the door bell rang and the blonde announced the job was not only finished but there was enough paint for two coats. Before the surprised owner could respond she said “ and by the way its not a porch its a Ferrari!!

AGM 2008

From Julie Rivett in Christchurch –
Attention particularly to those in the South. The April 2008 AGM will be held in Christchurch. It will be a good chance for everyone to show support and ask any questions. Details of ‘when and where’ to follow in the next newsletter.

Fundraisers for support group.

Available from Jenny are: GBS Teddy Bears ($12), magnets ($2.50) and badges ($5). Help us to keep the funding coming.

A Review of ‘Guillain-Barr Syndrome From Diagnosis to Recovery’ by Dr Gareth Parry and Dr Joel Steinberg

I have often wondered whether doctors today get impatient with sick people who, thanks to the accessibility of the Internet, can become instant ‘experts’ on their own condition. Anyone can ‘google’ their diagnosis and come up with a wealth of information; information which may or may not be correct. While I feel some sympathy with doctors who may have to deal with misinformed patients, I do believe strongly in the importance of self-advocacy. To advocate effectively one needs to be properly informed and this is where a book like Dr Gareth Parry and Dr Joel Steinberg’s ‘Guillain-Barr Syndrome’ is so valuable.

This book is one of a series of books published by the American Academy of Neurology which promotes partnerships between doctors and patients. The philosophy behind these books is that ‘The better informed patient is often able to play a vital role in his or her own care.’ The books aim to help readers ‘to develop a framework for understanding the disease and become better prepared to manage the life changes associated with it’.(p.vii)

Judged by this criterion, I consider Dr Gareth Parry and Dr Joel Steinberg’s book to be an outstanding success. The book deals with every aspect of GBS, from diagnosis to rehabilitation. It includes stories about some of Dr Parry’s patients and has the most clear and comprehensive description of the neuropathies that I have ever read.

I got sick with CIDP way back in 2002 and since then my husband, Peter, and I have been trying to learn what we can about this condition. Only since reading this book have I felt that I have finally got my head around the thing. There is a separate chapter in the book on CIDP and I found this very helpful. I knew, for instance, that my case was fairly serious and this was confirmed for me when I read that a treatment I had after I’d been really sick for two years, Cyclophosphamide, is only used in the most extreme cases. And it seems that I was right to worry about the possibility of my hair falling out!

I haven’t liked everything that I have learned by reading this book. The authors describe CIDP as a ‘life-long’ disease. They say, ‘Complete recovery or long-term remission without any residual neurologic problems is achieved in less than 5 percent of patients.’(p.207) I’ve decided that I am one of those ‘less than 5 percent’ and that my CIDP has ‘burnt itself out’. I haven’t had any symptoms of the neuropathy for more than two years and no longer have any treatment. I do have some crippling disabilities that CIDP has let me with, but I no longer speak about having CIDP. I might be kidding myself, but I prefer talking about it in the past tense.

The book is balanced and sane. The section on complementary therapies is very sensible, acknowledging that patients may seek alternative therapies but saying that the scientific evidence to support them is scant. ‘The alternative therapies discussed (massage, acupuncture, chiropractic, yoga, magnetic therapy and dietary supplements) are of unproven benefit but fortunately they are not harmful.’(p.189) The book is also authoritative. Doctors Parry and Steinberg do not resile from strong statements like ‘The authors strongly recommend that GBS patients not receive any form of steroid treatment for their GBS. These medications are ineffective and have many risks, some of which are severe and even life-threatening.’(p.153)

I am interested that the authors of this book refer to GBS (and CIDP) as a ‘disease’. I thought we could only legitimately refer to it as a ‘syndrome’. It is a relief that I can now stop casting around for alternative terms like ‘malady’ and ‘condition’ when I talk about it.

This is a wonderful book. On my recommendation, our local Melbourne support group has bought three copies for its library. Apparently these were the last in stock. If this is so, I hope it gets reprinted.

‘Guillain-Barr Syndrome From Diagnosis to Recovery’ is published by Demos Medical Publishing, Suite 301, 386 Park Avenue South, New York, NY10016 USA.

Valerie Simpson,
August 2007

Note: While some 70+ copies of Dr Parry/Dr Steinberg’s book are already circulating here in New Zealand we will try and get a worthwhile number of orders to bring another shipment of this book to NZ. Book costs $30NZ – contact Jenny if you wish to place an order.

Bio-Thermy

Meike Schmidt-Meiburg of Thames is one of our support group members. Meike has had GBS herself, and runs a ‘bio thermy’ practice in Thames. What’s Bio Thermy you are asking??…well it is a gentle, non-invasive form of body therapy which is highly effective in working with chronic stress, injuries and pains or problems associated with postural and structural imbalances. Meike finds it soothing having had GBS herself she wants to recommend it to others.

For more details Ph 07-8673163 - or e-mail: mmeiburg@slingshot.co.nz

Input please!!

I have had comment that we could, perhaps, modify our newsletter and give it a name (e.g. US Newsletter is called ‘Communicator’ and UK newsletter is called ‘Reaching Out’). If you have any suggestions please let me know won’t you. Your input is important.

If you need to get in touch with someone representing the support group – here is a good place to start…..you may need help or information, or just someone to talk to. These people have made themselves available -

If you live in, or north of Auckland, then John Davies, retired, is our representative for that area. John lives in Henderson and his contact details are:

Phone: 09-8388173 E-mail: cymro@clear.net.nz 

In the Waikato we have Terry Watton. Terry is on our Board of Trustees and runs a garden centre at Paeroa. His contact details are:

Phone: 07-8626438 E-mail: paeroagardencentre@xtra.co.nz

Over East we have Forbes Bennett. Forbes is an ICU specialist at Hastings hospital, and on our Board of Trustees.

Phone: 06-8769283 E-mail: fBennett@xtra.co.nz

In the Taranaki area Jenny Murray will take your calls.

Phone: 06-7511014 E-mail: jenny.gbs.nz@clear.net.nz  

Palmerston North/Manawatu area is covered by Peter Scott. Peter is our Treasurer, and works with NZ Post. His details are:

Phone: 06-3578463 E-mail: peterscott@clear.net.nz 

Covering all of Wellington we have Bob Stothart, retired. Bob is our President. Bob’s details are:

Phone: 04-3850240 E-mail: stothart@ihug.co.nz 

In the South Island we have our Secretary, Tony Pearson, retired., with help from Heather Clifford. Tony & Heather cover the northern areas of the South Island. Tony’s contact details are:

Phone: 03-5266076 E-mail: Tonypearson@xtra.co.nz

Heather’s contact details are:

Phone 03-5477406 E-mail: pearcem@xtra.co.nz

For central and southern areas of the South Island, we have Julie Rivett and Annette McCord in Christchurch. Julie covers the CIDP patients and Annette covers GBS patients, although a call to either will see you set on the right path.

Julie’s contact details are:

Phone 03-9819991 E-mail: jrivett@paradise.net.nz

Annette’s contact details are:

Ph 03-3478665 E-mail: Sam.mccord@inet.net.nz

Remember: If your local representative is not available – try one of the others.

There is always someone who can point you in the right direction, or listen to your problems.