Newsletter June 2006

The President’s Paragraphs

I feel privileged to have been elected as President of the Support Network at the recent AGM in Auckland. My tangle with GBS was decades ago in the 1970’s before you could look up such things on the internet and before modern treatments. I was never in intensive care, nor did I experience pain but I was off work for about six months, spent time in a wheelchair and felt ‘grotty’ for about five years. I was fortunate, however, to have a wonderful GP who confessed he hadn’t a clue what was wrong with me but he sent me to a neurologist immediately. We now know from international research, reported at our two national conferences in Wellington, that early identification and early intervention of treatment are crucial to coping with the perplexing condition and to eventual successful recovery.

I was lucky enough to attend the international GBS/CIDP conference in Atlanta in 2004 and my wife Margaret and I are planning to go to the same conference which is being held this year in Phoenix Arizona in November. I mention this to highlight the importance of international research and the significance of our own conferences in New Zealand. When GBS/CIDP people, and their families and support people get together good things happen. We share our stories and each story is different. We listen to the latest understandings about this peculiar condition and we build networks of support and encouragement. We start to see the bigger picture and we renew our hopes for a research breakthrough.

We have a system of support to be proud of and anything we can do to strengthen our networks and our understandings will be considered. We are constantly reminding hospitals that we exist as an organisation to support patients and their families. Our strength is that we have travelled down the road of physical deterioration (and a little bit of depression?) and we’ve bounced back. Giving support to those in need is a noble engagement and that’s why I feel privileged to be your president.

Bob Stothart

2. SECRETARY’S COLUMN

With the AGM over, bar writing up all the minutes etc, I am now turning my mind to fundraising for the 2007 Conference. One of the BEST sources of funds is via personal contacts – so if you have a friend, a friend of a friend, a business contact (preferably the CEO of a major corporation!!) or just know someone sympathetic to us GBS’ers who might be a source of sponsorship then either approach them or send me their details and I will –politely of course, but as they say “if you don’t ask you don’t get”.

Our own website is now active – go to www.gbsnz.org.nz to check it out. Any (and I do mean any) ideas, suggestions, comments or corrections will be most welcome – just e mail me them and if the board is happy with the idea we will incorporate it in the website. I am most grateful for the guidance of John Forman the Executive Director at the New Zealand Organisation for Rare Disorders who has been instrumental in facilitating the web site for us and to the skills of his “web master” Ben Chapman who has transformed my amateur input into something that I think looks pretty good. Perhaps not yet up to the standard of the USA and UK sites but we now have something to build on and develop into a really useful tool for GBS sufferers and their supporters over the years to come.

The Charities Commission are obviously meeting more problems than they anticipated in the application of the new law and have just advised us that the timescales for registration will be delayed (for how long isn’t specified). This should not be an issue for us and, indeed, may enable us to register under our new and revised Trust Deed. Talking of which – you will have seen in the AGM report that the revision of the Trust Deed has taken a very positive step forward. John Chadwick has a copy of my attempted revision – which he may or may not choose to use - BUT if anyone with some experience in this field would like to have a copy for review and comment they would be most welcome. Whilst we will obviously defer to legal advice and expertise there is no monopoly on good ideas on the basis of running the group efficiently and in accordance with the law.

Finally a big personal thank you to Terry. You have been a good and understanding President – quietly rubbing off my raw “UK corporate world” edges and easing me into the (better) NZ way of getting things done – I hope we shall have the benefit of your thoughtful advice on the board for many years to come.

Tony Pearson

Tasman and Nelson GBS’er have a natter over a coffee .

Tasman and Nelson GBS’er have a natter over a coffee

3. Clarification:

I have increasingly noticed that there is a confusion about neurology that needs clarification. When a patient is suffering with GBS or CIDP and a neurological appointment is suggested, this does not, in any way, mean that a ‘mental’ condition is suspected. Neurology is a science that takes care of conditions in which the many thousands of nerves throughout the body are affected in some way.

I sought Dr Parry’s input to explain this, as often a neurological condition is confused with a nervous condition.

Dr Parry explains:
"A neurologist is a specialist who takes care of people with diseases of the brain and spinal cord and the nerves in the limbs that control muscles and go to the skin. Weakness, numbness, tingling and pain are some of the symptoms caused by damage to the nerves that control the muscles and go to the skin and people with these symptoms are often asked to see a neurologist. People with GBS and CIDP have damage to these nerves and people with these diseases usually need to see a neurologist. A neurologist should not be confused with a psychiatrist who is a specialist who takes care of people with diseases of the mind that cause symptoms such anxiety and depression"

Changes to the Board of Trustees

Terry Watton has resigned as President but remains on the Board as a trustee. Terry was the inaugural president and as such had the task of getting the organisation ‘up and running’. He worked with Jenny Murray and a small band of like minded people to establish the support network. He brought to this task his own understanding of GBS having had to cope with that while continuing to run his garden business in Paeroa. To say that Terry has done a good job as president is to state the obvious. He has been a wonderful ambassador, going to an international conference in America and visiting GBS and CIDP people and their families whenever he has been asked. Sincere tributes were paid to Terry at the recent AGM in Auckland and all members will join me in thanking Terry for his enormous contribution.

Bob Stothart comes in as President to replace Terry Watton. Bob has been a trustee from the beginning and information about Bob is elsewhere in this Newsletter. See also Bob’s comments in his President’s Paragraphs.

Most members will know that Dulcie Antill is my sister. It was Dulcie’s experience with GBS in 1997 that was the catalyst for getting the support group started. We were in that terrible ‘space’ of not having ever heard of GBS and not having enough information about it to even begin to understand it. There was certainly no support for sufferers of this strange and worrying condition. This led me to get something going with the help of Terry Watton and Bob Gregory. Dulcie has been involved with the group from day one and has now decided to step aside. She will maintain contact through meetings and conferences as they come around. Dulcie deserves a huge THANK YOU for her involvement on the Board. Your understanding of GBS and your on-going contribution to the support network are deeply appreciated.

Welcome to Forbes Bennett. Forbes from Hawkes Bay is an anaesthetist by training and an intensive care doctor by further training becoming what is now termed an intensivist. He is at the sharp end of ICU management which is very appropriate as up to 40% of GBS people find themselves in their early stages of the illness in ICU. Forbes has a long history of helping others having served in Mt Ruapehu Ski Patrol for several years, looking after injured skiers often in adverse weather and dangerous conditions. Welcome Forbes.

Jenny Murray
National Co-ordinator

Heinz Schoeder. Personal Encounter

A while ago I was asked by GBS Germany for a story about one of our GBS sufferers for them to print in their newsletter. In return, I have received this story for our newsletter –

Doctors are fortunately not always right

GBS story of Heinz Schoeder, Rastede, Northern Germany

Heinz encountered GBS during Christmas 2001. It took Heinz almost 4 year for recovery before he started a bike trip of about 216 Km (135 miles) around “Lake Constance” in Southern Germany. This report should give all GBS patients where recovery is taking longer as usual the spirit for the future and “never give up”.

A few days later I felt some pain in my ankles and in addition to it I felt some needles and pins in my legs going upward. At December the 21st, I worked as a cashier in a Bank, I could not continue to “count the money” and went to the doctor. My doctor diagnosed a little flue infection and gave me some medicine against rheuma.(chronical pain in limbs) rheumatism

One day later all me problems went worst. My family called another doctor and he also diagnosed a little flue infection. The coming night was really worst. I could not move my legs and arm anymore. The emergency doctor, who was called because all other were on Christmas vacation, diagnosed a neurological illness and his advisement was to bring me directly into a Neurology. A few hours later I came into the Ammerland Klinik, which is located nearby. After some tests the doctors there stated: “Guillain-Barr Syndrome GBS”.

I never heard about that kind of Illness before. They explained to me, that this is a very rare disease and the recovery will take a very long time. I asked the question if I can die from this strange illness. The doctor simply said: Yes, but the most people recover completely.

This answer kept my very busy for a while and a difficult time started also for my family. I was treated with Immunglobuline followed by further tests. One of the results was, that my nerves had severe damages of axons. The doctor explained to me, that it will take a very long time to recovery and I may have to live in a charitable hospital a charity for several years. With such a statement I was transferred mid February 2002 into rehab in Lingen, Emsland.

After arrival in rehab the following goals were given by doctors: Improvement of all muscle functionalities, improvement of stability, balances and coordination as well. Wheelchair training and limited trials to walk on own legs. Step by step improvements of all normal functionalities to be used at home in order meet all social requirements on its own which means, not having a helping person at home.

Treatment: physical therapie, physiotherapie and ergotherapie (learning again to write letters, making little handworking, using knife and fork and spoon etc…)

Mid of July 2002 I participated the GBS Meeting held in this rehab-clinic. It was the first time I have seen other GBS patients who had already recovered and I really enjoyed that. After 11 month I could leave the rehab for home. The calendar showed November the 6th 2002.

January 2003: my GBS start up was now 14 month ago, I participated the GBS meeting held in rehab-center of Oldenburg, which was next to my home. I was still wheelchaired but I could already lead a cup to my mouth.

May 2003: I was now able to walk 600 meters using a “Rollator” (this is a walker) but had still problems with my legs and knees, who were not stable enough right now. I was able to eat with knife and fork but unable to write.

January 2004: My GBS start up was now over 2 years ago I participated the GBS Meeting held in Brake/Wesermuendung. It was not very far from my home. At this time I could walk with a help of a stick. My therapie at this time was: ergotherapie twice a week and physical therapie twice a week. Besides that, I trained a lot by myself in Nordic Working although the improvement went slowly.

Remark: Nordic walking ist a very new kind of sport. Normal walking with “sticks” normally used for skiing.

September 2005: My GBS start up was almost 4 years (exactly3 years and 10 months) ago and my wife and I made one of our dreams true. We started a biking tour around Lake Constance in Southern Germany. At the 3rd day, I felt and was hurt. One of my rib was almost broken and one of my knees went thick but I finished the rest of 17 kilometres (over 10 miles).

My thanks are now to all the people who helped me to reach this situation and very special thanks to my wife.

When in the past years all doctors told me, that I will be a case for the charity for ever, I now can say by today: “Doctors are fortunately not always right”.

Heinz Schroeder, Rastede
January 2006

Input from our Readers:

Dear Fellow Sufferers,

I would dearly like to let you know the things that have helped me the most in the last 5 years, after being diagnosed with GBS in Dec 2000. The only thing that the hospital could offer me was steroids which I had no part of, but looked up a homeopathy book that recommended Aconite for GBS which I started taking. The first y ear 2 tablets 3 times a day. The 2nd year 2 tablets twice daily and the third year 2 tablets once a day. 4th year 1 tablet daily and have taken none since. I was soon able to send my walker back to the hospital once I started on them but still had my crutches for a bit longer. I was unable to drive my car for the first 2 years as I couldn’t feel my feet on the pedals.

Another thing that I’m sure helped with my balance was Kordels MSM (1000mg). Both of these can be obtained from health shops or some chemists.

More recently I attended a Seniors information day and I heard about Himalayan Crystal Salt which I am having a teaspoon of consentrated solutaion in a glass of water first thin in the morning before I eat or drink, and I’m sure I have lost the washed out feeling I’ve had all along. My heartfelt thanks to the past sufferers who told me that I could get better. It’s all that kept me going at times.

Kind Regards,
Irene.
Source: Aladdin. P.O.Box 70093 Ranui, Auckland.
Ph 09-8320201
www.saltlamps.co.nz - they also have salt lamps.

IMPORTANT NOTE: PLEASE check with your doctor before taking any unprescribed medicines.

Funny:

Some people try to turn back their odomoters. Not me, I want people to know ‘why’ I look this way. I’ve traveled a long way and some of the roads weren’t paved.

Liasons:

Many people help keep this support group running. Alongside those whose names pop up regularly, we have a team throughout New Zealand who will help us out in their respective areas. If you need help, then check this list for the person nearest you.

Auckland: John Davies, phone 09-8388173
Waikato: Terry Watton, phone 07-862438
Hastings – Napier: Forbes Bennett, phone o7-8762283
Taranaki: Jenny Murray, phone 06-7511014
Palmerston North: Peter Scott, phone 06-3578436
Wellington: Bob Stothart, phone 04-3850240
Nelson: Tony Pearson, phone 03-5266076
Heather Clilfford, phone 03-5477406
Christchurch: Julie Rivett, phone 03-9819991
Annette McCord, phone 03-3478665

Our second Personal Encounter comes from Mrs Bruin of Christchurch.

15th October 2004.

My GBS Experience………….by Aaf Bruin, Christchurch.

On the 26th of July I woke up feeling slightly dizzy. However, I went to my daughters place (1 kilometer from here) to babysit her little boy for a couple of hours. When Jacqueline came home we had lunch together, after which I hopped on my push bike and went home. Still not feeling very well the next day, but thinking I was ‘in’ for the stomach flu which was going around. By then I was feeling nauseous and my legs did not do as they were ‘told’. All that was worse the next day, so on the 29th of July I decided to see my doctor who told me, after checking my reflexes, to go straight to the hospital.

They (i.e. the doctors etc) pretty soon concluded it might be GBS and tested me accordingly. I can’t say I was in pain, but lets call it painfully uncomfortable, and totally powerless in body, arms and legs. So there I was, from a fit person to wheelchair material in a couple of days time. Blood tests, lumbar puncture, full body scan, an EMG followed. After all that I was put on a drip for a while.

After a week – 10 days I started to feel a lot better. By then I started walking in a Zimmer frame. At last I could help myself when going to the toilet! From then on it was physiotherapy which I found hard and tiring. After 3 weeks of hospital I have now been home for approximately 9 weeks and managing well. I have got someone to mow my lawns. I walk without assistance but tire easily. I am also left with ‘funny thumbs; and a numb nose-tip and nostrils. I never know whether I have got a drip on my nose! I now always have a hankie handy.

One learns to adapt.
Aaf Bruin.

Note: Guillain Barr Foundation International, now known as GBS/CIDP Foundation International have a new address. They have not moved, but their address has changed to:

The Holly Building,
1041/2 Forrest Avenue,
Narbeth,
PA 19072,
USA

See website: www.gbsfi.com

Remember…….this is your newsletter. If you have anything you would like to appear in our newsletter let Jenny know.

2007 Guillain-Barre and CIDP Conference

This will be the third national conference which is focussed on Guillain-Barre and CIDP and it is the only conference in New Zealand which addresses these topics.

It is a conference organised especially for Guillain-Barre and CIDP people: patients, family and care-givers.

It is not a conference where specialists talk to each other, on the contrary it is a conference where everyone has an opportunity to ask questions and have their particular concerns addressed.

Most importantly, it is a conference where you meet (or re-meet) Guillain-Barre and CIDP people and have a chance to make friendships or renew old ones.

Make a note now of the following details and start saving to be in Wellington next April.

Dates: Friday 27 April to Sunday 29 April
Venue: Brentwood Hotel, Kilbirnie, Wellington (close to the airport)
Keynote Speaker: Dr Gareth Parry, Professor of Neurology,
Programme in brief: Friday-Wine, cheese and chat, your chance to meet people
Saturday-various presentations and group sessions, a full on day followed by a conference dinner
Sunday-Annual General Meeting of the Guillain-Barre Support Group of New Zealand Trust
Organiser: Bob Stothart

It is a great occasion and all GBS and CIDP people are urged to make an effort to attend. There is something for everyone in this special conference.

2006 ANNUAL GENERAL MEETING REPORT

The AGM went of according to plan on Saturday 29th April at the Ellerslie Masonic Centre – an excellent venue organised by our Auckland board member John Davies at minimal expense- many thanks John. Some 25 members attended and another 30 provided proxy votes. I suppose I was a little disappointed not to have a better showing from the “Auckland contingent” but whilst AGM’s are a necessary evil of “corporate” life I recognise they are not everyone’s cup of tea.

In spite of my misgivings on numbers we had a lively and constructive meeting. We were able to report good progress on the development of our own website – see Secretary’s Column for latest news – with some goods ideas for inclusion coming from the floor.

The meeting agreed that although Trustees Liability Insurance might be a very nice thing to have it was just too expensive for us at this time and, in truth, the group has a minimal exposure to liability issues currently as we are well structured and operate within careful guidelines. We will review the position in three years time.

After a couple of false starts the revision of our Trust Deed is now in safe, experienced and professional hands thanks to the generosity of our Patron Steve who offered her lawyer husband John’s services on a “pro bono” basis – what he thinks about that hasn’t been recorded! A draft revision of the Deed was circulated at the meeting and any comments or input should be passed in the first instance to the Secretary.

In his last report as President Terry recorded the fact that Jenny’s contact database recently reached its 500th person, an amazing achievement – a lot of people helped, informed and comforted. We were all urged to “spread the word” within our own communities not just to the medical professionals but to our neighbours and fellow members of local social groups. Terry noted that whilst our finances our sound we really need a major corporate sponsor to support the Group – if you know anyone that just might fit the bill PLEASE let us know.

Our Treasurer Peter Scott was able to present and explain a solid set of accounts thanks to a successful conference last year, some generous “regular” support contributions and a much improved financial membership base.

The Board, (with the exception of Dr Bob Gregory - our Researcher, who has resigned following his retirement from his post at Massey University) was re-elected along with Forbes Bennett, one of New Zealand’s foremost ICU specialists, based in the Wellington region, with expert knowledge of treatment of GBS in an intensive care situation. The board’s stature is greatly enhanced by his willingness to join us.

With the unanimous support of the meeting subscriptions will remain at $10 annually and $100 for Life membership.

Bob Stothart, our new President, reported on plans for the 2007 Conference and these will be detailed elsewhere either in this or future newsletters.

As always “Any Other Business” proved to be a lively forum- we discussed our obligations under the new Charities Act, our Privacy Act obligations, frustration at the apparent lack of knowledge of our Syndrome in the medical world in general but also praise for those specialists in our field that have set many of us on the, sometime long, road to recovery.

All in all a satisfactory session – if you were there I hope you agree with me and if not – as they say on the Australian TV ads – where the Blxxdy Hell were you!