Newsletter December 2007

President's Paragraphs

As we rapidly approach the end of the year and make plans for celebrations and holidays, spare a modicum of time to reflect upon the year and ponder highlights and the not so ‘high occasions. Ask yourself a few questions: did your health improve, did you attend the GBS/CIDP national conference, did you thank Jenny for the information she sent you, did you maintain your optimism and energy to take on what life throws at you? As you contemplate the year think about the New Year and what it may bring: are you ready for it and all that it may involve?

We know that Guillain-Barre/CIDP is a rare collection of diseases. Studies from around the world indicate that the frequency is about one person, or maybe two, per 100, 000 in the population. Imagine my surprise when I read in a newspaper from Calcutta recently (Margaret and I were lucky enough to travel to Bhutan this year) that an Indian neurologist was quoted as saying that the chances of getting GBS were ‘one in a million’. He may have been misquoted but my surprise was heightened when we actually reached Bhutan, a small kingdom wedged between India and China in the lower Himalayas. In our travelling group of fifteen, two people commented to me that they had family who had had GBS. One, her mother had suffered in Auckland and the other couple had a son-in-law whose father was stricken. He (the son-in-law) and his wife attended our national conference in Wellington in May and were well pleased with the information they gathered there. I wonder what the statistical possibilities are: three of us out of the fifteen who had close family with GBS experience. This seems rather more than 1:100,000 even to me who was hopeless at maths at school.

Whatever the incidence actually is, we know that GBS/CIDP has a devastating effect on families and caregivers as well as the patients. One of the attendant ‘issues’ can be loss of income, which in some cases can be economically very severe. I think we need to be aware of this problem, especially when we may be visiting new patients in hospital. I know of no funding sources that we can actually immediately tap into but I think we should begin to accumulate relevant information about likely church, government and community groups. If you or your family has any experience in this regard please let Jenny or me know.

With summer upon us we can look forward to the festive season and the prospects for the New Year. Let me take this opportunity to wish you and your family very warm and sincere Christmas greetings and best wishes for a joyous 2008.

Bob Stothart

Garden Tips - December–March

Little and often is the best course of action for everything accept watering over the next few months. Fertilise regularly, dead head regularly but water long so that the water penetrates deep into the soil to encourage the roots to become deeper and stronger.

Mulch your gardens to help jeep the moisture in.

There is still time to plant lettuce, capsicum, tomato, Radish and celery, even potatoes in order to have some great home made salids this summer.

Summer fruits are awesome to pick and eat. Check out you closest garden centre for their selection of summer fruits. Black berry, Raspberry, Strawberry, blue berries, grapes etc.

Enjoy your Chrismas, and may you be blessed many times over as you share time with family and friends.

Terry

Secretary’s Section

As some of you may remember my last Newsletter input was from Dubai – and my plan was to include in this missive a photo of Vivienne and I enjoying the high life in that place HOWEVER – on the plane to the UK after our sojourn I decided I needed to master my new camera – and – with the lack of grey cells that seems to be a regular issue these day – I proceeded to delete the lot! – so you will just have to imagine the luxury – alongside the sandstorm!

I said in our Christmas Newsletter – 60 copies sent to friends around the world – where did 2007 go?? Perhaps as the years crank on time tends to go somewhat quicker?? A Minus and Plus year for us – lost my Mum at the start of the year – a lady that never had a “too difficult “ box – she just got on and did it - and I think that had a lot to do with my attitude after meeting ( and understanding) CIDP – “been there, done that, what’s next!!” but nevertheless it’s sad to lose someone who has had such a large influence in you becoming who you are. The pluses ? ( and yes there were at least two!) learning that we were to become grandparents twice over in 2008 with both daughters announcing (God willing)a forthcoming granddaughter (due Boxing day 2007 – but the first one is always 10 days late – right??) and a grandson (Easter 2008) – so any hints and tips from you experienced guys – e mail me PLEASE!

To more serious issues!:-

Our revised Trust Deed is now with our “pro bono” lawyer (New Minister of Conservation - Steve Chadwick’s husband) – John as been very long suffering on this issue but hopefully now I have dotted all the i’s and crossed all the t’s so he can sign it off and we can move on to Board approval. Still no news on our application for approval under the new Charities Act – but I gather from the Press that things are taking somewhat longer than those in the know in Wellington thought!! – are we surprised!!!??

So to next years AGM – to be held in Christchurch for the benefit of all those of us that are MAIN ISLANDERS – Aucklander’s managed an attendence of (40) in 2006 so lets show em we can do a LOT better than that eh guys!! So a diary entry when you sit down to do the 2008 entries :-

Saturday 3rd May 2008. Burnside Bowling Club, Avonhead Road, (off Roydvale Ave) Christchurch at 1300 hours.

Plenty of parking and five minutes from the airport so an excellent choice courtesy of Bill Fraser. The Board will be meeting at the same venue at 1200 hours to complete the necessary formal bits and pieces before the AGM. Bill thinks he can arrange for local members to provide lifts to and from the airport if needed so if you are planning to arrive by plane let me know the flight timings and I will co-ordinate with Bill on transport.

And what else ?? – the Group have invested in a new whizzy computer – Jenny will be surfing the net like there is  no tomorrow but of much more importance it will make communicating with everyone much less of a pain.

Subs are now due BUT to avoid all the rush of pre Xmas mail I have agreed with our “money man” Peter Scott that my renewal notices will go out just after Xmas – so hold onto your purses and cheque books until to get my reminder – same price and same “good” value.

During the month I have had input from the UK GBS Group – my “starter” group – there appears to be a MAJOR issue developing in the UK to do with a world wide shortage of IvIg serum to treat, amongst others, CIDP’ers on a regular basis – so much so that the UK Health Service have developed a set of priority guidelines to determine which GBS’ers get treatment and who does not! I haven’t heard of any such “crisis” in NZ – has anyone experienced a problem in supply availability?

I read in our local press that the researchers have now developed an almost “instant” test kit that will enable wholesalers of things like Chicken and Pork to test if their supplies are free from e-coli and salmanella bugs – if this is so I hope it won’t be too long before NZ adopts these as standard tests for suppliers of raw meats.
Well I think that had better do me for this episode – we have a busy week ahead with contractor’s arriving to fit our new Solar Water heating panels on the roof and work continuing on the 1k approach track to the house to meet local council standards associated with new properties being developed here and Vivienne’s “to do before Xmas” list continues to grow. I hope life is being good to you I know our lives are about to change in the next few months and as you locals say - just “bring it on”!

Take care everyone, have a good Christmas and see you in Christchurch.

Tony Pearson

PERSONAL ENCOUNTERS

My name is Judith Conway. I am 59 years old and I was finally diagnosed with GBS in January 02.

My story actually starts 9 Dec 01, when I was driving from Levin to Palmerston North to visit my husband, Gary, who had a massive stroke on 6 April 01 and was left a quadriplegic unable to speak and could only communicate by raising his eyebrows.

Luckily I wasn’t out of Levin when I had stopped in the middle of the road behind ‘the queue of cars that had stopped’. While I sat there I looked over towards the kerb and thought ‘that car is the same as the one in front of me’. I soon realized that I was parked in the middle of the road by myself. Closing one eye, which gave me ‘normal’ vision, I drove to my son’s house nearby.

As soon as possible I went to the duty doctor who sent me to Palmerston North Hospital to be put under the care of Dr Silveburg, a neurologist from Canada. I was admitted for tests and sent home Xmas Eve 01. My daughter was visiting from Auckland and so I had lots of help, which I needed. The day she went back to Auckland I was again on my own. That night I ended up on the floor of my bedroom about 2 a.m. So, off to hospital for me. It was 22 January 02. I was unable to sit up, to feed myself, or do any other personal care.

After 7 weeks I was sent home again, where I slowly improved. Now, nearly 6 years later, I can do a lot more. I still need a walking stick to get around, but being able to drive again is a blessing. I go to the aquatic centre 3 times a week.

My husband died in August at the age of 58. My daughter has now moved to Levin and I spend a lot of time watching my granddaughter, picking her up from school and cooking her tea, while her mum works full time. My son is staying with me at present but is waiting for a transfer to New Plymouth.

My Syndrome, I was told, was GBS. I was never told that it was Miller Fisher or anything else, or if I was told, I don’t remember. My Syndrome came on slowly and was difficult to diagnose.

I am thankful for what I can do, but I still keep waiting and striving for the day I will be able to do even more.

My advice to others, never give up…..I WON’T.

Judith Conway,
Levin.

Thank you so much Judith for your story, and from all at GBS please accept our sympathy on your husband Gary’s passing in August.

Campylobactor - no laughing matter.

For those of you who have experienced campylobactor you will know better than anyone what a horrible thing it is, and that it sometimes leads on to Guillain Barr Syndrome. Please take the time to read the ‘Meet the bugs’ leaflet in your newsletter and please take the simple and basic precautions when enjoying your BBQ’s this summer.

Recent outbreak of CIDP in the USA

Over the last couple of weeks word has come through that there has been a cluster of cases of CIDP all traced back to one pork processing plant in Austin, Minneapolis.

Some 11 employees at that one plant have all been diagnosed with CIDP since December 2006… more information on www.startribune.com who broke the story on December 5th…. Headed ‘Pork plant worker says symptoms started with charley horse’, a report from one of the women who had worked there for 15 years. Work is just starting on processing data from that plant and hopefully we will be able to bring you any results in future newsletters.

As Always –

If you are moving house, or your details change, please let us know won’t you.

Fundraisers –

We have teddy bears with their GBS tops for $12.

Badges – kiwis with pauashell inserts just $5.

Fridge magnets with notepads $2.

Order from Jenny @ jenny.gbs.nz@clear.net.nz or snail mail – 27 Grenville St, New Plymouth. Thanks.

From Julie Rivett, Trustee, in Christchurch.

I would like to thank Jenny Murray for all the work she does for us and her time spent in helping us. I know that I only have to mention something and I have an answer by return e-mail. Anything re CIDP Jenny picks up is passed on to me and I really appreciate it. Jenny goes the extra to make sure my questions are answered the way I can understand and is always there.

I wish you Jenny, and your family, a happy Christmas and all the best for 2008.

Julie Rivett.

Merry xmas from Jenny and family,

Thank you Julie for that, and to your family and everyone receiving a newsletter, have a merry xmas and a great 2008. 2007 has been a good year for our family, and I hope everyone has some positives to take into the coming year.

I look forward to hearing updates from you all from time to time – and helping you if you have any querries. I don’t always have the answers but will try to get them if I can.

Merry Xmas everyone.

ORTHO-BIONOMY – Reminding the body of its ability to find balance.

My apologies to Meike Schmidt – somewhere along the lines I got my pamphlets confused and called this ‘Bio Thermy’ in the last newsletter. Sorry Meike.

Meike is a Practitioner in ortho-bionomy, and has found its concepts helped her through her GBS experience. Meike is based in Thames, and her contact details are:

mmeiburg@slingshot.co.nz and postal – 866 Main Road, Waitakaruru, R.D.6, Thames, or ph/fax 07-8673163
Please feel free to contact her for more information.

Lets end the year with a funny! - another of the thousands of blonde jokes, this time about Energy Efficient windows.

Dear Diary…

Last year I replaced all the windows in my house with those expensive double-pane energy-efficient kind. Then, this week, I got a call from the contractor who installed them. He was complaining that the work had been completed a whole year ago and I still hadn’t paid for them.

Now, just because I’m blonde doesn’t mean that I am automatically stupid. So I told him just what his fast talking Sales guy had tome me last year - namely, that’ in ONE YEAR these windows would pay for themselves. Hello – its been a year!!’

There was silence at the other end of the line, so I finally just hung up. He didn’t call back. Bet he felt dumb!

FROM US ALL HERE AT GBSNZ – HAVE A HAPPY AND SAFE XMAS AND NEW YEAR, AND WE WILL ALL BE BACK IN 2008.