Newsletter June 2008

President's Paragraphs

A very successful Annual General Meeting was held in Christchurch in early May. It was successful despite the weather Gods concocting an icy brew that had the cold seeping into old bones and the adjacent bowling greens looking more like swimming pools saturated by the non-stop rain. It was successful meeting because we met in a spirit of friendship and support and conducted the business after contributions from some of those present, about their GBS/CIDP experiences. This was led off with a great personal account from Chris Gamble of Nelson who told us of his quick decline and quickish recovery aided by some tough-minded determination to “…not let this thing beat me.” The cups of tea and finger food organised by the Christchurch team of Bill and Pat Fraser and Julie Rivett and the warmth of a common bond helped to drive away the Arctic blasts.

During the AGM we welcomed Chris Hewlett onto the Trust Board (to replace Terry Wotton) and noted that as a keen motor cyclist, she visits GBS/CIDP people on her bike. May recovery be as quick as the accelerating throttle of a throaty motor cycle.

Well before the meeting, a few of the Trustees had met to look at the organisation and to consider some strategic planning. All organisations grow and change and we need to be constantly reviewing what we are doing and looking for ways to improve our services. This process is on-going and if any members have points of view or a fresh ideas or a benevolent great Aunt, please get in touch with Jenny, Tony or me.

On a personal note, I had a total hip replacement operation recently and I was confronted with walking on crutches and using an array of ingenious devices which make everyday living a tad easier. This encounter made me recall my GBS experience of total helplessness and how the physiotherapists and occupational therapists were central to my progress towards recovery. Once again, it was the physios and the OT’s who got me on my feet and set me on the pathway to increasing independence. The role of these professionals cannot be overlooked or minimised in the recovery from GBS/CIDP. What my hip episode has made me realise (again) is how close we all are to needing help of some kind or another.

As the real blasts of winter herald their presence I wish you warm and sincere good wishes.

Bob

Garden Tips June 2008

Time to do the maintenance and tidy up thing in the garden. Prune roses and fruit trees, rake up the leaves and use them as a mulch if you can. Continue to plant vegetables every 2-3 weeks so that you have a continuous supply. Some parts of the country are in what can be called a 'green drought'

if you haven't had rain for a while remember to water your plants, the surface of the ground may look damp but underneath it will be dry.

Do not prune off the foliage of bulbs after they have flowered, let the tops dry off so that the goodness from the foliage is taken in by the bulb.

Things to look for in a garden centre near you are:

Dwarf Citrus, Nandina Gulfstream, flowering Polyanthus, Camellias, Rhododendrons, Azaleas, Lilly of the Valley shrub. Kalmias, roses, fruit trees and much, much more.

All the best
Terry

Secretary's Section

Well here we are almost at midwinter – I have just forced myself to come in from the garden where I have been working in shorts and a T shirt ! – to write my June Report. I know the dry weather is not necessarily in farmer’s or power generator’s interests – but it is nice to be retired in. Conversely my sister, who lives in Vancouver, has just told me on the phone that it is the wettest coldest June and summer in general they have had for many a decade – funny ( or scary) thing this global warming!

Final shout for Subs! – I will send out a last reminder to those of you who have not renewed in the next week or so and if I still get no response will remove you from the membership list – Jenny is more tolerable and WILL keep you on the Newsletter list unless you tell her otherwise. BUT .. as always please do think hard about dropping your membership. You may think you no longer need us but we, and those still suffering and yet to suffer from GBS need your ongoing support.

I have attached a fairly comprehensive report on the AGM so will not repeat myself here other than to say a big thank you to Terry for his service to the group both as a board member and past President. His quiet considered and sound advice was always welcome and I hope that, in spite of the potential rigours of his newly chosen career path, he will remain a supportive member of the group and continue to make his advice and experience available to us as we move forward.

It was disappointing to learn that both attempts ( against ACC – or more correctly the Ministry of Health - and WINZ) to have people with disabilities caused by illness treated the same as disability caused by accident have not succeeded. This distinction results in major differences in the financial and physical assistance that is made available.

Coming from the UK I truly believe the ACC system is a very good arrangement for dealing with the personal consequences of accidents ( were I a lawyer I may not think so!!) but it is difficult for the “layman” to understand how different criteria for support can apply to someone who ends up incapacitated as a result of a car smash to an equivalently incapacitated person caused by contracting a serious disease (or Syndrome!!).

I was asked by the AGM last year to put together a “Guide” for new sufferers on where they should go to get “official” assistance (beyond immediate hospital care) – to be honest I have been at a loss where to start ( being a new kiwi unfamiliar with this country’s systems doesn’t help but I suspect doesn’t put me at too much of a disadvantage with you 3rd and 4th generation types!) – and so I was feeling a bit of a failure until I read something in the Listener in February of this year – a quote from Steve Maharey as he quit his Ministerial job with Labour to take up his new post of Vice Chancellor at Massey. Whilst full of praise for the clinical care his wife had received up until her death from cancer some 4 years back he said:-

“ The system has a lot to learn about people who are likely to have long periods or care and need to access different parts of the system because you have no idea how the different treatment may connect to something else your doing. If someone could map it out for you and be available to give advice throughout it would be a huge help and a big step forward.”

And I thought .. well if he’s been in the system for nearly 20 years and, I am told, been Minister of just about everything ( except Health) and he doesn’t know where to go then perhaps my lack of progress ain’t so bad – but I will try harder!

We are having a family celebration to mark mid winter Christmas ( strange NZ habit but I’m up for any excuse to get the family together!) and now with TWO grandchildren to dote on it should be a great time. Then its head down to get Vivienne ready to follow our President’s example and organise a new hip in early September; - she is dreading it – not the operation but having to rely on me to run the house and sort food ! – I have already sent an SOS to eldest daughter to come and stay for a few weeks over the “crucial” time!. So with that I will wish you all well and sign off – next job Tax Returns!!

Tony Pearson

Your Group Needs You!

No it’s not the usual bleat for subscription to be paid but for someone to help keep the Group’s website current and relevant.

Our site is maintained by the NZ Organisation for Rare Diseases – but operates as a stand -alone site. They however provide a Technical Expert who does all the “whizzy” things to enable information to be added/changed and deleted from the site in response to an e mail request from us and organises links to other sites etc etc . So.....it’s not an IT expert we need but someone reasonably competent with Word Processing and E Mail systems who is willing to keep abreast of developments in the NZ and overseas Groups and act as a co-ordinator/editor, spending a maximum of a couple of hours a month liaising with our “Webmaster” Ben to keep us relevant. As most of you already know there is nothing worse than logging onto an advertised web site only to find it is months out of date.

Ben is currently preparing a “Merchandise” page for us to offer group logo items for sale to support our funds and we are considering establish a Forum page that will enable members to seek the experience of others to questions and problems they have encountered after GBS.

Having an active website is a REAL bonus for the group but it needs a member of the group to take responsibility for its management. If you feel you could help please contact Bob, Tony or Jenny. Your contribution to running the group will be most welcome!

Annual General Meeting Report

26 members and supporters braved the terrible Christchurch storm that coincided with our meeting. At times the Bowling Club looked more like a multiplex swimming pool as the greens were totally under water and such was the force of the rain on the roof that normal conversation was difficult. But – being kiwis - we shrugged it off and had a useful and enjoyable meeting. AGM’s by their nature tend to be “boring” affairs – with all the “official business” to get through - but our President deemed ours should be otherwise and the meeting was preceded by a great talk from Chris Gambel about his rollercoaster ride down to GBS intensive care and his subsequent remarkable recovery. Chris’ story will be on the web site shortly. There followed a lively general discussion on member’s own experiences and again two themes were evident:- All our experiences are different and Speed of diagnosis is KEY to a speedy and full recovery. We have all heard that before I know - but it is so true!

Our patron, the Hon Steve Chadwick – now Minister for the Environment – updated the meeting on the progress her sister Val is making from her severe GBS attack, and also Val’s husbands Pete’s recovery from a heart attack. Such a positive couple in the face of issues that would floor many of us!

And so to business!................The minutes of last year’s Wellington meeting were accepted with the Secretary confirming our Charities Act registration and the finalisation of the new Trust Deed ( now awaiting Charities Commission approval before becoming active). The President’s report acknowledged the ongoing strength of the group in terms of membership, financial and voluntary effort support. The importance of our mission is evidenced by the many expressions of thanks from those enlightened and supported by our group information and visitors. The Treasurer presented and explained the group’s accounts and was congratulated on the achievement of an unqualified audit report – no small matter for a charitable operation like ours. The group’s healthy financial position means that we can continue to operate with our existing rate of annual subscription.

Terry Watton, a past president, has resigned from the board to give himself more time to pursue a new career path – we wish him well. Terry’s place on the board has been taken by Mrs Chris Hewlett – a GBSer from Katikati. Otherwise all serving board members were re-elected to their present positions.

The meeting was unanimous in its desire to offer Dulcie Antill and Terry Watton Honorary Life Membership of the group for their unstinting efforts over the years on our behalf – and indeed, in Dulcie’s case, for being the reason the group was founded.

Our next conference will be May 1st to 3rd 2009, in Auckland, venue nearly finalised and will be announced via the Newsletter in due course. John Davies rounded the meeting off with an enthusiastic report on his and other member’s efforts in representing GBS and the group at the Neurological Open Day at the Auckland Medical School.

With the business over and the rain easing the President thanked Bill and Pat Fraser and Julie Rivett for organising the venue – closed the meeting and joined the rest of us in an enjoyable and extensive “afternoon tea” provided by local members.

 Hon. Steve Chadwick addressing Annual General Meeting, Christchurch, May 08.

Hon Steve Chadwick addressing the Annual General Meeting held in Christchurch on 3rd May 2008. This photo taken by Vivienne Pearson, thanks Viv.

Briefly –

  1. Our next conference will be held in Auckland in May 2009. The cost of attending plus accommodation can sometimes put it out of the reach for those who would benefit most from being there. If there is anyone in Auckland prepared to accommodate a billet could they please contact Jenny. If you would like to be billeted please also let Jenny know.
  2. There have been an unusually high number if GBS cases reported in the Wairarapa over the last few months. An attempt is being made to set up a regional group there. If anyone living in that general area is interested in attending an inaugural meeting please contact Neil Hickland, R.D.2 Carterton – phone 06-3797692.
  3. We have a need to have more persons to help out in their own particular area if we should get a case of GBS, CIDP or MF there. If you are prepared to visit a newly diagnosed person in hospital or at home, please contact Jenny and a list can be drawn up and published in our next newsletter. It is such a lonely feeling to be diagnosed with some illness with a weird name, and feel people just don’t understand. A friendly visit, and proof there is life after GBS can be very good medicine to someone in the depths of the worst stages of GBS.
  4. We are still getting a lot of ‘return to sender’ newsletters each quarter. If you are moving house or no longer require the newsletter for any reason, please let us know!
  5. GBSFI inform me that many Communicators are being returned to them also, - so if you no longer require the Communicator please let Jenny or GBSFI know, and you can be taken off their listing. GBSFI’s e-mail is: info@gbs-cidp.org
  6. Can anyone honestly say they are getting major relief from purchasing a Bio Mag underlay. I have been asked this question by one of our GBS men who is having trouble with his feet and was considering buying a Bio Mag to hopefully relieve some of the foot pain. They are an expensive item, but if they do offer relief from the typical residual GBS problems, please let me know, and I will put your comments in the next newsletter so others may have feedback also.
  7. Dr Parry & Dr Steinbergs book, ‘Guillain Barr Syndrome, from diagnosis to recovery’, is available from Jenny, as are badges, teddy bears and fridge magnets. Just send me a note c/- 27 Grenville St New Plymouth, or an e-mail – jenny.gbs.nz@clear.net.nz

Personal Encounter of Shirley Gurnell. (GBS 2003)

I’m 52 and am convinced my troubles started back in February, this is, of course, in hindsight. My daughter and I flew to London to attend a wedding. We started coughing the same afternoon we landed at Heathrow, thus, the first virus. By the time 3 weeks had gone, I was at the Doctors, on a course of Antibiotics for a bilateral chest infection.

On arrival back in NZ, I felt fine, and proceeded to have the fluvax that was in April. In June I developed raging sinusitis which required Augmentin, Flagyl, and lots of pain relief. In early July the winter ills were all around me, especially at work, I’m in healthcare, and we had some very sick patients, with influenza. My husband was the first to succumb to a tummy bug; I actually didn’t have that problem. The infection I got went straight to my chest again. For the next two weeks I attended the GP twice and had two weeks virtually off work, this time the antibiotics failed me.

I felt very ill and decided to have an early night, I had difficulty walking, co-ordinating my legs seemed harder, I knew I had some sensitivity problems, as my legs felt as though they were wrapped in cotton wool, and pins and needles in my hands. Passing urine became a chore on the Wednesday (I went into hospital at 1 a.m. Thursday 25th July), so I knew all was not right in that region. When I got up during the night, about 12.30 a.m, my legs crumbled beneath me, I crawled on all fours to the toilet, thinking that if I had something solid to hang onto, I could get up. But no, it doesn’t work like that, I couldn’t feel my legs at all, I also had this ‘tight’ feeling around my mid-riff, then I realized that my back was numb. I had no pain whatsoever. Luckily I had taken the cordless phone to bed with me, on which I rang 111 for the ambulance. The paramedics were excellent, and got me off the floor and into the chair and in the ambulance. I was in Emergency within the hour. All the usual tests were performed, bloods, ECG, conduction tests, urine and by 5 a.m. a preliminary diagnosis by the Registrar was made and confirmed by the consultant subject to the MRI results. The MRI was done at lunchtime and confirmed Acute Demyelinating Encephalomyetitis, I had inflammatory areas in my brain also, and consequently a lumbar-puncture was performed on the Friday to rule out MS.

I was admitted to Ward 25 (the cancer ward, but the only medical bed available) and treatment of Iv Methyl Pred 1gm daily for 5 days was commenced that afternoon. I was only allowed to transfer from bed to commode for 6 days, then the physio got me up. I was so pleased to see the back of the bed, and to get to the toilet !!! I realize that I am one of the lucky ones, in the fact that I have GBS in a milder form than a lot of the case studies I have read. My progress is good, it is 4.5 weeks since discharge and I’m back working 2 hours a day. I’ll be doing this for another couple of weeks, then I’ll return to OPD. I’m still tingling, and still have pins and needles in my hands, but I’m positive in time this will diminish. My feet still feel hot, and the numbness is still apparent in the ‘nether regions’ but a big improvement down there as well, my urinary control is much better. I continue on prednisone, having dropped from 40mg down to 20mg this week. By the end of September I should be off it completely.

I want to thank the support group for their e-mails and welcome pack, we understand much more about GBS than we did before with the literature available in the pack. I hope my little story can offer encouragement to people, to remain positive and make the goals smaller and achievable.

Shirley Gurnell.

I was sent this recently and thought I would share it……….

God Is Watching..

The children were lined up in the cafeteria of a Catholic Elementary School for lunch.

At the head of the table was a large pile of apples. The Nun had made a note and posted it on the apply tray:

‘Take only one. God is watching’

Moving further along the lunch line, at the other end of the table was a large pile of chocolate truffles. A child had written a note and put it in front of the truffles:

‘Take all you want. God is watching the apples’.

Obituaries

On 3rd March we lost one of our longstanding members, Mr Loxley Jensen. Loxley had been part of this group since almost the beginning and used to do the newsletter for many years. Our sympathy to Jocelyn and their two girls at this time. Loxley was a lovely guy and will be missed.

Personal Encounters

We are really low on personal encounters for our newsletters. We would dearly love some stories for future newsletters. We have a few in the pipeline, and know this is a very popular part of our newsletter, but we need your input here. You all have a story to tell and our readers would love to hear it. If your story has already been told, and you would like to update it, please do – it is good to know what has happened 5yrs, 10yrs down the track.

It would be good to have perspective also from a caregiver, (wife, husband,partner,mother, father) who cared for somebody with GBS, CIDP or MF. You too have a lot to offer our readers from your perspective.