Newsletter March 2008

President’s Paragraphs

The Annual General Meeting is coming up in May (details elsewhere in this Newsletter) and I urge you to attend if you possibly can. See how the organisation works and take part in the decision making process. After-all, the organisation exists for the benefit of members. Before the AGM takes place one or two people are getting together to evaluate our present effectiveness as a national support group for Guillain-Barre/CIDP and to rattle a few ideas looking to future strategic direction. If upon reading this you would like to make some suggestions, please email me or Jenny or Tony Pearson or Peter Scott. Tell us what is working or not working; tell us how we can improve as a supporting network; tell us how we can become the very model of a support network.

Some of the things we need to consider are:

  • Financial planning
  • Sponsorship
  • Hospital visiting
  • Involvement of New Zealand based neurologists
  • Services to members
  • Accurate medical information to members
  • Communication.

If you have thoughts or creative opinions about any or all of the above items, do not hesitate to put pen to paper of fingers to keypads.

As I was thinking about the organisation, I pondered on some of our strengths and I came up with the view that what we do matters. When we visit a bewildered patient in hospital, trying to comprehend what is happening to their body, and you say “I understand how you’re feeling because I’ve been there too,” you can see their eyes change. Our hospital visiting is a cornerstone of what we do. So is the provision of clearly written, helpful, medical information. We are also profoundly fortunate to have daily access to Professor Gareth Parry, (a New Zealander who is a world authority on GBS/CIDP, working in America) who answers numerous emails without hesitation and with helpful and supportive comment. And no mention of our strengths is adequate without mention of the unstinting, time-consuming and totally voluntary work that Jenny Murray does, day in day out, week upon week. All our volunteers contribute time, energy and compassion in the never-ending tasks of helping others.

Don’t hold back. Tell us how we can get better.

Bob Stothart
President

Symposium

10th International symposium – suburbs of Chicargo –
Liason meeting and lunch will take place on Thursday Nov 6th
Followed by the Welcome Reception, the official opening of the three day event. Interesting and educational workshops and meetings will be held throughout the weekend.

Conference 2009
We are planning to hold the 2009 conference in Auckland towards the end of April and we haven't settled on a conference venue. If you have any knowledge of a suitable venue please ring Bob Stothart (04 3850 240) or email him: stothart@ihug.co.nz

The venue should:

  • be accessible for wheelchairs
  • financially reasonable (not top of the line prices please)
  • sited for transport
  • have a lecture room for up to 150 people
  • plenty of parking close to venue
  • have 'breakout' rooms for discussion
  • have the usual audio visual equipment.

If you can help, don't hesitate to make contact.

Cheers,

Bob

‘From Diagnosis to Recovery’

An excellent book specially written for those without a medical background by Drs Gareth Parry and Joel Steinberg. Available from Jenny for just $30 a copy.

Garden Tips for March/April

If you like spring flowering bulbs your local Garden Centre will now have a range in stock. The 'Box stores' will have them in as well but if you want the best range visit a garden centre.

For some of us we will need to raise our lawns from the dead this Autumn. Once you get some moisture, either rain or heavy dews will do, fertilise your lawn with a slow release fertiliser to get the grass growing again, once the grass is growing then you can think about spraying out the weeds.

If Oxalis is a Pain in your Back, weed the area or knock the oxalis down with round up (or similar) then apply RONSTAR, this is a pre-emergent herbicide, formulated to kill the seeds in the soil before they germinated. Sprinkle RONSTAR on dry over the area that you are wanting to control. It will last approx 3 months. Ronstar will not kill anything already growing planting a row of seeds will be a waste of time.

Terry Watton
Paeroa Garden Centre

Secretary’s Section

I trust you all had a good Christmas and New Year’s break and, where able, you managed to catch up with family members that perhaps you don’t see as often as you might wish. Things locally, on the GBS front, were quiet with no new cases being reported or notified to us - not that it means there weren’t any of course, just that no one thought to tell us about them – or indeed to tell the sufferers about the support available from the Group!

Vivienne and I are now well into the “grandparent” thing –with the arrival of our first granddaughter Kia on December 29th – a few days late, but she has certainly made up for that since and now has us all dancing to her tune ( which at times can be quite raucous!) – but a super experience as many of you will know and we are looking forward to the years ahead watching and helping her to grow. Thank you to those of you who DID send us your hints, tips and advice – probably the wisest was “try to remember she’s not your baby”!

We are now “solar powered” – at least for hot water - and whilst I don’t think we shall recover the capital cost in electricity savings – well not in our lifetime – at least we feel we have done a bit for the environment.

The AGM will shortly be upon us and this newsletter contains the formal notice of meeting. Full details of the Agenda, last year’s minutes and Proxy forms will be sent out ONLY to currently financial members in a couple of weeks – so if you want to have your say in the affairs of the group but haven’t yet sent Peter your 07/08 sub ( and there are 50 of you in that boat at present!) then this is your last chance.

Incidentally if you have been allocated a new POST CODE and haven’t yet told me I would appreciate advice of the same. Whilst NZ has, I know, managed for years without them believe me as the new sorting machinery get adopted the POST CODE will become essential – we have been thro’ the experience in the UK some years back and the penalty for a none post coded letter was, and still is, several days delay in delivery of the mail.

We are now OFFICIAL having been accepted by the Charities Commission as a properly constituted charity and our new registered number is CC20639 – we will incorporate this in all re-prints of group documentation over the coming year. Whilst this may seem purely bureaucratic, at this stage, in due course I think that NOT being properly registered will result in an automatic rejection when appealing for funds to the major sources of Charitable Support in years to come.

The New Trust Deed has had a final possible “legal” glitch clarified, has been approved by the Board and is now with the IRD for their confirmation that we still meet all their requirements for ongoing tax exemption – this could take days – or months!!!

With those two issues now more or less sorted and my membership database almost up to date – I should be issuing final membership cards in the next day or so – I will turn my attention to the web site which is sadly in need of an update – I’m still hoping one of our talented IT literate members will take on the role of Webmaster! – if you feel the urge to have a go do PLEASE contact me.

And talking of Volunteers! – we had our biennial community fete last weekend – it’s an event that was thought up by 6 Mums with kids at the local school – they called it Taste Tasman and it’s a celebration of local crafts, food and wine – to raise money for school “extra” necessities not funded by the state. We have barely 70 families in the village but the event attracted nearly 4000 people – YES 4000! So it made me realise that although most of the 97,000 recognised volunteer run charities and associations in New Zealand rely, inevitably, on a small section of their membership to do the routine “donkey work” of running the group it remains a fact that groups like ours could not continue to operate without ongoing support from the overall membership and wider interest group so..........your group needs YOU!

I think that had better do me for now. I look forward to seeing as many of you as possible at the AGM in Christchurch. Take care and for those of you still struggling with recovery from a GBS attack do as the UK Group motto says and continue to Get Better Slowly.

Tony Pearson

Does Guillain-Barr Syndrome Recur?

So many times I have been asked just this question, when a timely article appeared in the Communicator recently. With permission from Estelle Benson, I am reprinting the article in this newsletter. Thanks Estelle.

Annual General Meeting

The 6th Annual General Meeting of the Trust will be held in Christchurch on Saturday 3rd May 2008 at the Burnside Bowling Club, Avonhead Road commencing at 1300hrs.

Avonhead Road is reached from Memorial Ave turning into Roydvale Ave at Burnside Park. The Bowling Club is about 250m past the Rugby Club and there is ample car parking space. It may be possible to arrange transport to the venue for those members arriving at the airport on the day of the meeting. Please let the Secretary know your flight details.

Formal Notice, Agenda, Minutes and Proxy Forms will be circulated to all financial members of the Trust by the end of March. Everyone is welcome to attend the meeting but only financial members are eligible to speak and vote at the meeting.

Members who are unable to attend the meeting may nominate a Proxy to vote for them, either our President Bob Stothart or another member of their choice.

Nominations for membership of the Trust Board are welcome and should be lodged with the Secretary as soon as possible but not later than Thursday May 1st. Nominations should be signed by the candidate, who will need to be, or become, a member of the Trust and supported by a Proposer and Seconder who must also be members, together with a brief CV of the candidate. If no nominations are received prior to the meeting the board may accept oral nominations at the meeting.

If you have any questions about the forthcoming AGM please direct them to the Secretary Tony Pearson on 03 526 6076 or tonypearson@xtra.co.nz

Note: Julie Rivett tells me its getting cooler down there so please take some winter woollies with you for the AGM. Don’t forget the many sites of Christchurch while you are there – the museum, art gallery, and many others.

Our first personal encounter comes from John McLellan –

How I Contracted C.I.D.P.

My first hint that something was not right was in May 2005. I had been very hard working at home doing refurbishment, often working at night, painting and wallpapering. One night I noticed that my feet were very cold and that the toes were sore. Presuming I was having an onset of chillblains, something I was prone to, I carefully washed the feet and applied cream. Next morning they were no better but I was also suffering from stiff leg and thigh muscles something I initially put down to the work I was doing mainly up ladders.

Over the next 2 -3 weeks it seemed to be getting worse and legs definitely lacking strength so I went to see my GP. Now I am Diabetic type 2 but, as I had never been given any testing means, I had gone off my medication as I had felt quite well with none of the symptoms I had previously had. GP was not impressed with this and quickly blamed my leg problem on the Diabetes. So I was smartly back on the medication with a testing kit. 2 weeks later with my Diabetes fairly well under control but my legs getting worse, I was back to see the GP. She realised that it was more serious so I was given an urgent appointment with the Acute Diabetes specialist at the Hutt Hospital.

His first reaction that I had DVT however a quick Ultrascan son dispelled this and I commenced a series of appointments with blood tests, x-rays and an MRT scan to diagnose my problem. By this time I was having great difficulty walking and needing a stick to get around. Eventually Dr. Carroll decided that it was not a diabetes related condition but more serious so he referred me to Dr Abernethy at Wellington Hospital.

After initial muscular tests and electrical nerve testing (boy that hurt) and then 2 more MRI scans, and eventually, a Lumbar puncture, my CIDP condition was diagnosed. This had taken some 3 months from my first known symptoms. In the meantime we had been to see some other private specialists and undertaken several sessions of massage treatment. My wife is Indian so we also consulted a local pundit who undertook some very strong massage and then suggested sitting in the sea for 30 min a days. Considering this was mid-Winter my reaction to this suggestion can easily be imagined.

The lack of strength in my legs was a big issue around home. Living in a multi-level house on the side of a hill meant lots of stairs which were a major problem. Not just the lack of strength but also the lack of balance meant that moving around was a big hassle. Fortunately it has never affected my driving ability, though driving an automatic was easier than using a manual gearbox clutch.

Dr. Abernethy then started me on a regular infusion of Intragram an immunoglobin product. First a 5 day session of 750mls per day and then once a month 500mls thereafter. This treatment was broken for a month while we tried a programme of Predisolone 5 x 100mg tablets every Monday for 4 weeks. Seems Dr.Parry in Minnesota is having some success with this treatment. However the side effects were an issue. The first week wasn’t so bad except for not being able to sleep for the first 2 nights after the tablets but by the 4th week my blood/sugar levels were going up to 30 which was dangerously high. So this treatment was suspended.

I attended some physio classes at Hutt Hospital and met some fellow GBS sufferers, but found that while they may have helped with strengthening my XXXX leg muscles, they also XXXX another muscular condition I had so I no longer attend these.

Now some 18 months since the treatment started I am much better. Only my legs were ever affected and now I would say I have got back about 60-70% of their strength. I can now climb steps unaided and I am not able to get back to doing some work around the house including up ladders etc. I no longer use my stick, and the wheel chair we bought "just in case" sits in storage. I had lost 6-7 kg mainly in my legs and middle body but that has now started to regain. I'm also fortunate that there has been very little pain associated with my CIDP.

I feel that my Diabetes type 2 condition hampered the recognition of my CIDP condition and some conclusions were jumped at. I also wonder how I managed to contract this condition. Was it my miss-spent girl-chasing youth? No other previous health conditions of either myself or my family hint at something like this. Certainly no viral conditions anyway. About 15 years ago I began to get Migraine headaches, which also affected my vision and I sometimes wonder if this was a prelude to the onset of CIDP but I expect that is unlikely.

I think that for 2008 I will continue to get better....I'd love to able to "tip toe". Though I suppose I will never dance a waltz again. It took me about a year to reach the zenith of my incapability so I figure it will take 2 or 3 times that to recover fully but it will happen! That I am sure of !! Abernethy wants me to go off the Intragram ( its too expensive) and try the Prednisolne treatment again but I am resisting as I will probably have to begin self administering Insulin. But I suppose it is inevitable.

Anyway all the best to all.

Regards
John McLellan

Note - Change of e-mail address for GBS Foundational International

If you wish to order a ‘Communicator’ or contact GBSFI for any reason, please note their change of e-mail address is now: info@gbs-cidp.org

Our Second Encounter comes from Kirstina Cameron -

It was a Sunday afternoon and I had just woken up after a night out on the town. I was feeling a little strange – I was having trouble keeping my balance, was feeling sick and had a pins-and-needles sensation in my fingertips. Deciding I was just hung over from the night before, I went back to bed thinking I would feel better after sleeping a while.

The next morning when I woke up the pins-and-needles had spread to my elbows, feet and even to my face. I was having difficulty breathing and couldn’t stand up without holding onto something. I called a friend to take me to the doctor. I was sick all the way there and luckily the doctor was able to see me straight away. He diagnosed me with “Benign Positional Vertigo” and gave me an injection for the nausea. I went back home and slept for the rest of the day.

By Tuesday morning, the pins-and-needles had spread to my entire body. I couldn’t stand up or walk at all. With difficulty I managed to send a text message to a friend who came over that afternoon and called an ambulance.
With one paramedic on each side holding me up, we went downstairs to the ambulance. I couldn’t understand why they kept telling me to open my eyes, I thought my eyes were open. It wasn’t until later when I saw myself in a mirror that I realised my right eyelid was drooping, almost completely shut.

At the hospital the doctor shone lights in my eyes, hit me with hammers, took my blood pressure and temperature. I got the feeling they just wanted to get me walking by myself and send me home so they could free up the bed. By my third “walk” around the ED with two people holding me up, they finally realised that it wasn’t going to happen and told me I’d be staying the night. I was given a blood test and sent for a CT scan to rule out a brain tumour. I don’t remember much about the scan but it was then that I became worried it might be something serious.

The CT scan came back clear and I was finally admitted to the medical ward at 5am, having been in the ED for 13 hours. When breakfast came round that morning, I was too weak to hold a spoon and a nurse had to feed me like a baby. After breakfast a team of three neurologists came in and hit me with more hammers, shone more lights in my eyes and watched me “walk”, again with two people holding me up. I heard the words “Guillain-Barr” for the first time in my life. I was told I showed some signs of a variant called “Miller-Fisher Syndrome”. The doctors announced I would be moving to the neurology ward and arranged for me to have a lumbar puncture and MRI scan.

The MRI scan was not fun. It took about an hour and it screeched the whole time. I was given ear plugs but they were useless. Lumbar punctures aren’t fun either, but the pins and needles had numbed my body all over so I didn’t feel it much. When these were over I got a call from my parents. They had gone to Australia for a holiday on Monday, two days earlier. My brother had told them what had happened they booked the first available flight back to Wellington, which came in on Friday. I felt awful for ruining their holiday but they told me not to worry about it.
The next few days were a blur, I tried to sleep all the time as there wasn’t much else I could do. It was too much of an effort to open my eyes so I just kept them closed. I was given a special switch to call the nurses as I was too weak to push the normal button. It was hard to adjust to sleeping on my back, I don’t think I’d slept on my back since I was a baby. But the nurses said I might stop breathing if I lay on my stomach, so I had to do what I was told! At first my appetite disappeared almost completely, eating made me feel sick. I was constantly trying to give all my chocolate to the nurses because I just couldn’t eat it!

I had a steady stream of visitors, one group of friends decorated my room with balloons and people kept asking if it was my birthday. It certainly felt like my birthday with all the presents, cards, flowers and chocolate –hospital isn’t all bad! My roommate was great too, her niece made the best afghans! When my parents got back, my mum brought me a teddy bear. I named him Gilly, much to the amusement of the doctors. They’d come in every morning and ask how Gilly was before they’d ask how I was!

I was given a course of immunoglobulin, at this point I had an IV line in each hand which was very uncomfortable, but I was proud of the fact that I had $10k worth of blood sloshing round in my veins! I also had to have a second lumbar puncture towards the end of my stay, the doctors said I was the only patient they’d ever seen sending text messages during a lumbar puncture.

Little goals were so exciting. When I brushed my teeth by myself for the first time since getting sick, I called my mum and told her. Another time one of the buttons on my pyjamas came undone. It took me 20 minutes to do it back up but I was so happy when I finally did it. Feeding myself took a while to get the hang of and I’d get more food on me than in me. I was too embarrassed to eat in front of my friends because I’d make such a mess.
The following week I had to get some electric shocks to test my nerves or something like that. I’d been having a bad day - I was feeling sick and had refused to eat breakfast. I must have looked very strange when the nurses sent me down to have the shocks done – I was in a wheelchair wrapped in blankets, holding a banana in one hand and a “sick cup” in the other. The shocks were worse than the lumbar puncture, especially the ones on my neck and on the back of my knee.

Towards the end of the second week I was starting to get back on my feet. A physio would come and see me once a day. They would stand me up and get me to walk up and down the ward, with assistance of course. One of the nurses told me I walked like a crab. The double vision was a problem too, especially when I saw two doors and didn’t know which one to walk through. Inevitably, I would pick the wrong door and end up walking into a wall.
I left Wellington Hospital after just two weeks and was admitted to the rehab ward at Kenepuru Hospital. I didn’t like Kenepuru Hospital at all, the nurses weren’t as nice and I was the only person there under 70. It was nice to have my own room but I was a bit lonely without my old room mate. And there was a crazy old man in the room next door who kept shouting. They also put me back on the disgusting “minced and moist” diet, even though I had been eating regular food at Wellington Hospital. The first night there I got rid of my mush and sent a friend out to bring me McDonalds.

In my time at Kenepuru Hospital I did all the exercises the physio set me, I walked as much as I was allowed and did my best to prove to everybody that I wasn’t sick anymore. It must have worked because I was allowed home just three days later.

It’s now been almost six months since I came out of hospital. I had to leave my job and put my studies on hold, but I don’t mind. I got to lie around the house in my pyjamas and eat whatever I wanted! I also got to spend time with my family and reassess my study options (hopefully this will be the third and final time I change courses!), and I will be starting my software engineering course in two weeks time.

We wish you all the best with your course Katrina.

Remember…… This is your newsletter. If you have anything you wish to have included in a newsletter, please let us know. If you have comments, questions, advice – we welcome it.

Newsy Bits –

  1. Many people help to keep this support group going, and one to be congratulated this time is Eileen Jacobsen of Auckland. Eileen opened her gardens for a gold coin donation towards GBS funds, and raised some $84 for us. Thank you Eileen.
  2. We are just managing to find enough personal encounters for our newsletters, and invite anyone who wishes to have their story told to send a copy to Jenny for inclusion in a future newsletter.
  3. On speaking to physiotherapists and occupational therapists, they tell me that so much equipment from hospitals, loaned to patients, is never returned to the hospital once their use is no longer required. If you have any hospital equipment that might have helped you when needed, is no longer required, but hasn’t been returned, please either return it personally or ring your local hospital and arrange for it to be picked up, so others may get the same benefit from it that you have had. Thanks.
  4. Front page of the Dominion Post, Tuesday March 18th featured a young man, Kenny Harris, 42 days in ICU with GBS. He had an outing and went with his medical team for a day at Te Papa complete with all his life support ‘bells and whistles’. We wish you a speedy recovery Kenny.

Supporting the Support Group.

Often we have the need for other recovered GBS’rs or CIDP persons to make contact with a newly diagnosed patient. It is so encouraging to hear the voice of, or meet face to face, or receive a positive e-mail, from someone who understands their predicament and has recovered. If you would like to make yourself available for this type of support please contact your nearest local GBS support person and let them know.

Auckland……..……..John Davies……..Ph 09-8388173
Central North Island……Chris Hewlett……07-5490931
Napier, Hastings………Forbes Bennett……06-8769283
Taranaki………..Jenny Murray…………….06-7511014
Palmerston North…….Peter Scott………….06-3578436
Wellington……………Bob Stothart……….04-3850240
Nelson/Blenheim……..Tony Pearson……...03-5266076
Christchurch………….Julie Rivett…………03-3221449