Newsletter December 2006

Phoenix, Arizona

I had the pleasure of attending the GBS/CIDP Foundational International Conference in Phoenix Arizona at the beginning of November. I went to the previous conference in Atlanta in 2004, learned heaps and enjoyed it so much I was determined to go again. It really is a wonderful experience and I urge anyone who can to attend sometime in the future.

About 400 people were there and as everyone has had GBS or CIDP, or one of the varients or is a caregiver or family member, everybody shares a common bond and conversation is easy and very frank. The presentations provide accurate, up to date information about the syndrome and many of the presenters, doctors, psychologists and neurologists have had GBS/CIDP themselves so their insight into the problems is first hand and first class.

The following points are worth noting.

  1. The incidence of GBS/CIDP remains about 1 or 2 per hundred thousand in the population.
  2. There are about 5000 cases in America annually.
  3. Early detection of the condition and early intervention of treatment are crucial to a successful outcome.
  4. Campylobacter remains a pre-condition in about 40% of cases.
  5. Some people will experience severe pain while others will have no pain.
  6. A small percentage of people will end up in a wheelchair.
  7. The involvement of loved ones, family and friends in rehabilitation is really beneficial.
  8. As research goes on, differing forms of the syndrome are being identified: Acute motor axonal neuropathy; Acute motor and sensory axonal neuropathy; fisher syndrome; Bickerstaff's encephalitis; Overlap syndrome. And there are many more.
  9. The significance of this research means that specifically designed treaments, tailor made for individual patients will eventually be developed.
  10. Plasma exchange was first used as a treatment for GBS in London in 1978 and the trials showed that plasma exchange hastens recovery.
  11. Similar results have been found with immunoglobulin.
  12. About 100 attendees participated in a sponsored walk (or wheelchair trip) and raised over $10,000 for research.
  13. Americans have a superb ability to gather sponsorship revenue and many aspects of the conference were fully funded by sponsors (I wish we could crack this conundrum in NZ!)
  14. Special thanks to GBS NZ for paying my Registration fee.
  15. Enrol now for the 2007 conference in Wellington next April. You'll enjoy every moment of it.

May you all enjoy a wonderful Christmas and a refreshing New Year.

Bob Stothart
President

Secretary’s column

We got back to New Zealand mid October – and were VERY pleased to be home – and of course still are even though summer does seem to be taking its time arriving!

Well its that time of year again when you find yourselves dipping into your pocket for all sorts of things – and the Group is no exception ! – subs for 06/07 are now due and in the next few days you should be receiving my reminder. No change from last year - $10 per member and $100 for Life membership. As always let me press you to renew or initiate your membership even though GBS may ( hopefully) be well behind you. Membership subscriptions form an important part of the basic annual funding we need just to keep the support group running and, in my book at least, $10 a year is little enough repayment for all the help and support I got from Jenny and her team when our mutual “infliction” arrived unannounced!

E mail copies of the Newsletter ? – you will recall I asked for those interested in this as an alternative to a hard copy to let me know – well just 7 of you did – so I think that pretty much puts the “mockers” on that idea. Jenny tells me she has asked this in the past with a similar response. In all honesty I have to say that as an old fashioned “ex accountant” I still prefer a printed copy to relying on my e mail files – I do receive a number of e mail newsletters nowadays from different organisations but usually end up printing them myself to pop in the relevant file – so sorry Jenny you will just have to keep on licking those stamps!!

Applications and cheques for the Conference in Wellington have started to arrive – don’t worry if you don’t hear from me for a little while – I need to sort out membership renewals first and will then get round to acknowledging you application – a mere male I’m afraid – no good at “multi-tasking”!!

We have succeeded in acquiring a reasonable level of funding from Lottery towards getting Gareth Parry to the conference and with a bit of arm twisting on our Treasurer and Gareth’s own contribution to the cost he is now locked in as our keynote speaker.

Nelson/Tasman continues to have its more than fair share ( it seems) of new GBS’ers – I think our contact network must be improving ( in spite of no encouragement from the local hospital specialists) as we seem to be getting in contact quicker and more completely with new cases. We have had on remarkable recovery from the very depths of ICU and dire predictions of a lengthy recovery – Chris was hit very badly by GBS end August but is already back at work and “popped” in for a coffee looking very well indeed. I will try and persuade him to write up his story for Jenny in due course.

We have a busy family Christmas planned - as I am sure do many of you – and the kayak and boat should get a good work out (weather permitting of course!).

Have a great time over the holiday season and take care

Tony Pearson
Secretary

Personal Encounter from Dave Gordon, Timaru – with postscript update.

WHAT THE HELL IS GOING ON?

I am a 41 year old married male with 5 kids. In August 2001 I got cramp in my right leg in the middle of the night. I have had cramps before but this time it left me with a tight muscle and a ‘pins and needles’ type feeling that would not go away. This continued for three days, and then my leg did the same thing again – cramp in my calf muscle and a feeling that is hard to explain. After a couple of days of this I went to the doctor. I could walk, but not straighten my legs properly. I told the doc what had happened and he gave me some pills to help with the cramp.

After a week things were no better. I went back and was sent to hospital to have ex-rays and ultra sound done on my legs. This showed nothing wrong. She suggested I see an orthapaedic surgeon.

Another couple of weeks went by and I went to see him. He sent me to Christchurch to have my back scanned. He thought I might have a pinched nerve or even a tumour in my spine. Was I glad to hear him say it was neither, but he had no idea what it was!

By now I was having a huge problem to walk For some reason I couldn’t control my feet. They were sort of dead, but with some feeling.

In November I was put in to hospital for lumbar puncture, bone marrow biopsy and more blood tests. Now, they thought I had a mild case of Guillain Barr. I went to Christchurch hospital and they confirmed this was the problem. I went back to Timaru and was given 5 days of intragam (white blood cells) transfusion. My legs were not getting any better and I was having huge problems with them swelling. I was given pressure socks to wear that came up to my knees – this helped. I also had plastic feet supports to stop the foot drop as this led to a couple of big falls . I was given another 5 days of transfusions.

Early January 2002 I started getting cramps in my forearms and tingly sensations in my hand and chest. I was put back into Timaru Hospital and transferred back to Christchurch where they monitored the situation. Plasma exchange was to be done, so they did this for 6 days and also put me on high dose steroids. Nothing happened and I lost the use of my thumbs completely (when I turned my hands upside down, my thumbs would just drop down) and very little finger movement. Now they said I had C.I.D.P. There was not much they could do but just wait and watch the situation.

Well, at least we knew what the problem was now, or so I thought. I kept in touch with doctors and in April was put back into Christchurch hospital for more tests. I had not improved any at all.

More ex-rays, blood tests, scans and another bone marrow biopsy. This time they showed more concern than previous. They did a biopsy of my right side pelvis and this time they had some news. A tumour had eaten a 35mm hole!! Wow – what news!!. I started radiation treatment two days later in Christchurch. This meant another 5 weeks in Christchurch as I had just spent 3 weeks in hospital. Thanks to the cancer society for organising a place to stay and their ongoing support here in Timaru.

Its now January 2003 and I can type with one finger and have some movement back in my thumbs. I’m still waiting for my legs to work and hoping for a full recovery from both problems. I walk with the help of elbow crutches and have a lift to get me in to the house as steps are still a big problem. This is a brief story of my encounter with C.I.D.P…. so far!

There have been some sad moments and some very funny moments as my children age from 16 years down to 2. The 2 year olds are twins. My wife has been very supportive through a very trying time and I hope 2003 will be a happier year. We have had great support from family and friends.

I always look forward to reading the letters from the Guillain Barr Support Group and learning how this has affected different people.

Cheers,

Dave, Timaru.

Dave has brought his story up to date this week, with the following –

Living with an illness.

It has now been over five years since I first heard the words 'Mild case of GBS", let alone the initials CIDP and 'You also have a bone type tumour in your pelvis'. It takes quite a bit for it all to sink in!! There has been a lot happening in this time. I still walk with one elbow crutch and I still have the odd fall. I have met wonderful people over this time and now have a very different outlook on life. I have attended the two GBS conferences in Wellington with my wife, and it is great to catch up with other people I have met.

At the start of this year I decided I am well enough to go back to work. I spoke to my Dr and specialist that I was still seeing every six months. They were quite surprised and said I should take it very easy. I had already been down this path two years earlier when I decided to do some weight training. This was something I thought I would do to surprise people how well I was getting. The only problem was the more weight I tried to lift, the harder it became and the more tired I got. I was having to have bigger breaks between exercises - up to half an hour, so I could walk back inside from my garage to my house. After talking to a specialist they explained the fatigue factor. So I should start work and take it easy. Now when you have been a panel beater for 25 years, and you walk with a crutch, it has not that easy to find a job. I still have trouble writing neatly with a pen. I found the initial job in a panel and paint shop and was quite pleased with myself.

I worked for six months part-time, building up to full-time and had approval from a doctor to start full-time only ...to be told my employer was closing the place down. I got one month's full-time work. When he told me he was closing down, I just said 'that's not the worst news I have ever had'. I'm now looking at doing a Mobile Paint Shop business and am planning on 2007 being my new start.

I still suffer with lots of cramps and shooting sensations in my whole body. Sharon says that when I sleep sometimes my body does a sudden jerk and sometimes it wakes me up. It is always in the back of my mind when cramps continue 'this is a relapse' - but so far so good. The kids still ask me how long before I am better and I just shrug my shoulders.

It is great to be back in the public as you sometimes tend to shut yourself off.

Cheers,

Dave, Timaru.

Conference

Try to be there if you can. It's worth every moment meeting others who share your concerns, experiences, stresses and understanding. Take that trip to Te Papa you've been thinking about for a while, visit Aunt Agatha, see the unique Karori Sanctuary, ride the Cable Car, shop at Kirkaldies, visit some art galleries or just soak up the absolutely, positively capital city. You don't have to stay at The Brentwood but that's where the action will be. Hear the best people we can get talking about Guillain-Barre and CIDP. Strengthen your understanding of these conditions, meet new people and renew old friendships. You will be very welcome so come, learn and enjoy. The conference dinner (an optional innovation) should be memorable.

POSTCODES – Thanks to those who have already sent me their new postcodes. To those who haven’t, please drop me a line or e-mail me with the changes.

BADGES – GBS NZ kiwi/ pauashell badges available from Jenny…….$5 each.

This was sent in by Tony, our Secretary -

There is a new wine on the market for Seniors –

California vintners in the Napa Valley area, which primarily produces Pinot Blanc, Pinot Noir, and Pinot Grigio wines, have developed a new hybrid grape that acts as an anti-diuretic. It is expected to reduce the number of trips older people have to make to the bathroom during the night.

The new wine will be marketed as Pino More.

IMPORTANT………..TAKE CARE THIS SUMMER

So many of our GBS cases start off from a bout of food poisoning, usually campylobactor. I am enclosing a pamphlet for you about this illness, and ask that everyone take care with hygiene over the summer months especially. Barbeques and xmas can be a whole lot of fun and family time, but food poisoning is not at all funny, and can lead to something a lot worse. A little care can prevent a whole summer of misery.

NEWSLETTER:

It is not hard to notice that since Loxley finished producing the newsletter it has lost a lot in presentation. I am not up to Loxley’s skill level by any means. If there is anyone out there with the required skill level who would like to give it a go then please get in touch with Jenny and discuss it won’t you. Meantime…..you’ll have to contend with me and my mistakes!!

REMEMBER If anyone has any contributions to make to our newsletter then please send them in. We are always on the lookout for a funny…..a verse…..or a serious contribution.

MESSAGE FROM JENNY Ian and I would like to wish you all a very happy xmas and all the best for 2007. We started the year off with a new granddaughter in March….grandchild No 7. Currently we have three grandchildren with chicken pox but they are all generally healthy and we are grateful for that.

I have hit some health bumps this year, but hopefully am now on the mend. Thanks go to Bob and Tony – they have carried me through the last eight months but I hope to be back in full swing in the new year. I hope to meet up with a lot of you again at the conference.

Until then…all the best for a happy and healthy xmas and 2007.

Train of Life

Some folks ride the train of life Looking out the rear,

Watching miles of life roll by, And marking every year.

They sit in sad remembrance, Of wasted days gone by,

And curse their life for what it was, And hang their head and cry.

But I don't concern myself with that, I took a different vent,

I look forward to what life holds, And not what has been spent.

So strap me to the engine, As securely as I can be,

I want to be out on the front, To see what I can see.

I want to feel the winds of change, Blowing in my face,

I want to see what life unfolds, As I move from place to place.

I want to see what's coming up, Not looking at the past,

Life's too short for yesterdays, It moves along too fast.

So if the ride gets bumpy, While you are looking back,

Go up front, and you may find, Your life has jumped the track.

It's all right to remember, That's part of history,

But up front's where it's happening, There's so much mystery.

The enjoyment of living, Is not where we have been,

It's looking ever forward, To another year and ten.

It's searching all the byways, Never should you refrain,

For if you want to live your life, You gotta drive the train!