Newsletter September 2008

President's Paragraphs

Spring is here the calendars tell us but the heat and sunshine will need to improve before we can really believe it. I have been using the enforced indoor time brought about by excessive, seemingly endless, wet days to think about our national conference next May.

For me, the conference is the highlight of our support services. We attempt to assemble the best possible programme, with something for everyone. So this little homily is a thinly disguised ploy to urge you to attend if you possibly can.

Speakers will include Professor Gareth Parry, a world authority on GBS/CIDP, especially the associated pain that some patients experience. Gareth always brings fresh insight to his presentations and he is determined not to leave the conference until he has answered everyone’s questions. He will be supported by Dr Forbes Bennett who works in the Intensive Care Unit in Hastings. More than 40% of GBS/CIDP cases are admitted to hospital through ICU so Forbes will unravel for us what goes on during those early, stressful days. Dr Pralene Mararaj is an Auckland doctor who recently had GBS herself and she will share with us a very personal view of her experience.

There will be other speakers and a FORUM especially set up to answer questions from the floor of the conference. And a particularly popular session is when the whole conference breaks into small groups for people to share their GBS/CIDP stories. These sessions usually produce good questions for the Forum session.

The conference is for patients, caregivers, family and supporters and the medical specialists attend to help us understand this strange medical malady that is GBS/CIDP. I firmly believe that the social interaction is of equal importance to the new, medical information. Friendships are made, experiences shared and fresh hope is engendered. Make plans now to be in Auckland at the Airport Gateway Hotel, on 1,2,3 May 2009.

I hope to see you there.

Bob Stothart

Conference May 2009

The fourth national GBS/CIDP conference will be held in Auckland at the Airport Gateway Hotel from Friday 1 to Sunday 3 May 2009.

The Airport Gateway Hotel is five minutes from Auckland airport and has facilities suited to our conference. We have attained a special conference price of $89 per room. This is a wonderful price for Auckland.

To make a booking, and I urge you to do this now, you need to ring the hotel: 0800651 110, mention the number 61223 and GBS conference to get the special rate.

The hotel has a restaurant, is single storey, most rooms have a walk in shower, plenty of parking, good access: the place is overall modest but quite suitable for our conference.

Make your booking now:
Airport Gateway Hotel
206 Kirkbride Road
Mangere
Auckland

Freephone 0800 651 110

Does anyone have answers for Heather Zinger. Heather recently asked me this question about food allergies

I contacted Guillain-Barre Syndrome when I was 4 years old. I was hospitalized for 5 months. My parents were told I was fully recovered when I left the hospital. I suffer no lasting physical symptoms, e.g. walking or moving problems. However I've been plagued with a life time of asthma, food and environmental allergies, hyperthyroidism (that was later treated making me hypothyroid). Do other people who have contacted this illness, suffer from some of these same problems after they've "recovered" from Guillain-Barre Syndrome? Do you know if there is a connection between food allergies and Guillain-Barre Syndrome?

If anyone has any answers for Heather, please send them to Jenny and she will pass them on.

Thanks

Garden tips

No garden tips this month, other than get out and enjoy the sun, plants lots of tomatoes, lettuce, capsicum, cucumbers and potatoes for all those awesome summer BBQs and summer salads. There is nothing like picking your own.

Terry

Secretary's Section

So a Leopard never changes its spots eh! – well they are wrong!! – for the past 7 years I have been going around with this sort of virtual “recognition badge” on my shoulder (in my mind) which says – “CIDP been there ( 3 times) and done that and made nearly a 100% recovery” – great eh!! – this last 10 days have changed all that because I have ( through no fault of my own ) become a CARER!!!!!!!!!!!

Earlier this year Vivienne decided to follow our President’s example and have a total hip replacement. She has been suffering for the last 12 months and progressively – somewhat more rapidly over the last 3 months – quality of life has been receding so we decided to flag the next few years overseas holiday plans – bypass the vague timescales of the NZ health system and secure a private operation with the best of the best in the Top of the South. So on September 3rd the deed was done and today (Sept 13th) Vivienne is walking around on one crutch and has prepared our first post op “real meal” – thanks to her pre-planning, a good sized freezer and an idiot proof microwave we have not had to revert to my sole capability on the cooking scene of omelette and beans!! – and all is looking good for a full recovery over the next few months. BUT ...... although I had been supportive pre op and thought I had things under control for the post op scenario boy have I had a wake up call!!

It’s probably too soon for me to take a rational view of the whole set up but for the first time in my life I think I have come to appreciate the total dedication and effort that is involved in taking on the role of carer. The last week has been a non-stop effort of meeting personal and household needs! – I have gone to bed shattered but not been able to sleep properly – fearful that Vivienne would need my help to meet the overnight calls of nature (inevitable at our time of life!!) without the risk of a fall. I had little idea of the way the clothes washing and dish washing up piles up and the wet weather we have been having this last few weeks in “sunny Nelson” hasn’t helped. All those flickering lights on our whizzy F&P washing machine have had to become friends rather than things I walked past on my way to the shed!! And in the background the growing list of jobs “to do” – this report being one of them !!

And that’s only the physical side of it – on an emotional level the stress of having to accept that there is nothing you can do to help that very special person you had planned to spend the rest of your life with (now that the kids have flown the nest) but are reliant on the skills of others to pull her (or him) thro is a pretty sobering thought

And all this as a result of an operation that is now “old hat” to the medical profession and has a 98% success rate and all is back to normal in 3 to 6 months– so I have stopped to think what must it have been like for those CARERS who were (or maybe still are ) faced with a loved one stricken by GBS – I know just how scared I was when I was diagnosed with this rare syndrome back in 2001– Vivienne’s lot must have been 10 times worse – needing to keep a positive optimistic face on things for my sake whilst coping with the full workload of a household and a “bedded” husband – and without a defined timescale of when – or if - the nightmare might end!

So .........for all of you that have carried (or still carry) the CARER’s role for your partners thro’ the trauma of GBS/CIDP I now sincerely take my hat off to you – I have experienced a little of what you have been through.

So now the ex Accountant and Company Secretary kicks in!!!.....................

Thank you to those of you that responded to my “last chance” call for ongoing membership – I will now clean up my records to deal with the delinquents!

My plea for a website editor produced an unprecedented number of respondents and thank you all ... Lil Morgan has now taken on the role and is already effective – if you have any suggestions for the website contact her on lil.m@xtra.co.nz - one of her first major tasks is to determine if an active on line website “forum” for dealing with member’s questions and queries is a ‘do- able’ thing. Thank you Lil you have eased my burden.

Our new Trust Deed has been approved by the Registrar of Incorporated Societies and is now doing the rounds of the Board for necessary signatures prior to registration with the Charities Commission. I was reminded of the importance of our registration last week when my application for registration for our local community association (of which I am also Secretary) was rejected as our rules did not meet the requirements of the Act and until I can get things sorted we are no longer “tax free” nor qualify for a goodly number of charity grants.

The Policy sub-committee of your Board have had two constructive meetings over the last few months – with a view to mapping out a plan to move the Group forward – whilst the suggestions we have come up with will need to be considered and endorsed by the full Board I can perhaps “leak” some of our initial thoughts as follows:-

  1. We will explore ways of increasing awareness of the Group’s existence and purpose both with the general public and the medical profession
  2. We want to develop a more structured hospital visitor network nationwide and where there is sufficient numbers and interest to consider forming local meeting groups
  3. We will seek to expand our limited initial forays into providing work place training/information for front line medical staff in our hospitals.
  4. We will standardise our administrative systems to improve the efficiency of distribution of information and relationship between our presently diverse officer responsibilities.
  5. And last, but by no means least, we want to encourage our membership – i.e. YOU - to tell us about your GBS/CIDP experience – no two events are the same and all are unique – let Jenny know and share your thoughts and advice with the rest of the Group.

We will report on progress on all of these initiatives in future Newsletters and at the Auckland conference. If you have skills, experience or energy to help in these plans contact Bob, Jenny or myself - you will be welcomed with open arms and will derive much personal satisfaction from helping run this so worthwhile organisation.

Well that had better do me for this Newsletter – my special lady is “ in bed” and hopefully will have a good night – tomorrow’s menu is organised and the washing is in the F&P so from this temporary CARER goodnight!

Tony Pearson

Encounter from Grant McKay, Matamata.

My story starts in October 2003 just after my 53rd birthday.

Two weeks prior to this I had had a bout of diarrhoea which was over in a few days. The Doctors think it probably was Campylobacter due to the severity of the GBS, but this could not be proven as my bowels did not move again for three weeks.

On the Monday evening I mowed the lawns so was not too bad at that point. Tuesday, I had developed abdominal pains so decided to go to my GP to check this out. He gave me pills to start my bowel working again and sent me home. Back to GP on Wednesday with the same problem. This time was given an injection as well and sent home. By the evening my arm strength was going and I had developed pains in my lower legs and lower arms. I spent a very disturbed night as pains got worse and weakness increased. Thursday morning back to GP, by this stage I could barely walk and required a wheelchair to get from car to Doctors rooms. GP shook his head and sent me off to Waikato Hospital where after various tests and a lumbar puncture were diagnosed with GBS. By this stage could not walk at all and paralysis had set in. From here went to HDU and as my breathing failed to ICU where I was put onto a ventilator for ten days which was a very frightening experience. By now I was paralysed from my shoulders down.

The pain I was having in my arms and legs went after about a month and has not returned. My sensory nerves have not been affected at all so sensation has always been good. I have not had pins and needles, numbness or tingling. My motor nerves have been affected limiting my mobility significantly. This is when the long haul started.

I was in Waikato Hospital for 8 months then to a private hospital for 2 months. I won’t go into the details in hospital ( I could write a book ) except to say the Health Professionals that I have worked with have been great, the Physiotherapists, Occupational Therapists, Nurses and most Doctors do a wonderful job despite the lack of resourses.

I lay there for nearly three months before any movement started to return. After 8 months I was on my feet with the aid of a walking machine to hold me up and my arms were beginning to move. At this point I was discharged with a head operated electric wheelchair to a private hospital to continue with rehab. The wheelchair was soon converted to hand operation as my arm and hand movement improved.

At 11 months I finally came home still being hoisted in and out of bed and into my electric wheelchair, shower chair etc.

Intense Physiotherapy has continued until the end of 2007 when the funding was cut. Progress has been slow but steady, plateauing often. In October it will be 5 years, I still have an ongoing balance problem and have very little ankle movement. Steps are a problem and my hands are quite deformed despite lots of work by Occupational Therapists and Hand Therapists.

I walk outside with 2 sticks and inside unaided. My walking is quite bouncy but is getting better as my balance improves. I still have a Caregiver to help with showering and she continues to work with my hands each day.

On a brighter note, earlier this year I passed my driving test so this has given me back some much needed independence.

I cannot stress enough the toll an illness such as this takes on our Family Caregivers. They are expected to care for us and in our case work to sustain a reasonable lifestyle with very little help available.

I may not be able to work again but with a positive attitude, lots of determination, a good sense of humour and a loving wife and supportive family we are beating this life shattering syndrome and are now looking forward to the rest of our lives.

Brian Bennett is a GBS sufferer, and has some advice on foot problems.

The old foot problem .As you know its now 12 yrs since I had GB and I still have feet problems but by putting your feet in cold and then hot water several times it shocks them and helps reduce the heavy foot problem for a time.

SKINS, not sure if you have heard of these, but they are a tight fitting special garment that can be worn as a knee high (which I have ) that help blood circulation and muscle development .and also help keep your legs warm . My legs are like ice so its been a help.

All sports people us them ( rugby players in particular )and there is a web sight : skins.co.nz that will tell you all about them.

They are expensive, my ones cost $74 from Rebel Sport but worth it . Wished I had used these much earlier as it would have been a great help and stopped a bit of the pain ...

If anyone else has a way of relieving foot pain please let us know and it can be shared with everyone via this newsletter.

Miller Fisher Syndrome Sufferers

GBS Foundation International has just released a new pamphlet on Miller Fisher Syndrome. If you would like a copy let Jenny know.

Our second personal encounter comes from Gordon Stephenson, Putaruru.

My GBS. Gordon Stephenson, Waotu, RD 1, Putaruru ph 07 8832 862

October 10 2005, and my 81st birthday. Happy, still farming (after a fashion) with a 2 year old steel hip, keen tramper, etc etc. Then a few days later, a chesty cough, and a few days in bed. Recovery after a week.

THEN, on Friday morning 21st October, I wobbled when I got up to go to the toilet. I did not pay much attention. On Saturday, our Auckland son and 4 children came to visit. I wobbled again. My concerned son said ‘off to the doctor’. The Saturday evening duty doctor in Tokoroa tapped and poked and said ‘stroke’. More tapping. ‘Hang on, I think you have GBS’. The one doctor (in the Waikato ?) who could have diagnosed so quickly, as he had had it himself many years ago.

So it was off to Waikato Hospital. I was soon away with the fairies, but I learned later I developed severe pneumonia, my heart stopped twice, I was in and out of Intensive Care and High Dependency, and totally immobile. No breathing (a trachy), no voice of course, eyes shut (eyelids malfunctioning) no movement except for the ability to move my left hand and forearm a bit. And of course in that weird state of being unable to communicate.

Awful for my wife Celia and daughter Lynn (who lives near us). Far worse for them than for me. Daily trips to Hamilton, an hour’s drive away. And then to sit beside an inert body with tubes and wires in it from every aperture and some.

For me, tests galore. Medical students inspecting a rare medical case study. Lumbar puncture by a ‘learner’. I knew because I could hear the chief directing her, but her (I think) Chinese hands infinitely gentle. Not so gentle were the electric shocks. As a farmer I know all about electric fences, but to have one’s neurologist whom I could not see prodding my face , and I suspect the rest of my body but I had no feeling, and experiencing what I expect a Taser does to you, it was not fair. Months later I had him on about this. ‘You bloody sadist’ and he just laughed and called me his Lazurus patient.

Being unable to ring the ‘Help’ button for a nurse was eventually overcome by using a sort of pressure sensitive small balloon which I could wobble my left hand on to. With the family, we worked out a laborious communication system. They had a paper pad and pencil. I still could not open my eyes, so they held my left hand (why the left all the time ?) and recited the alphabet. When they reached the letter I wanted, I squeezed and they noted it. And on to the next letter I wanted. This was not shorthand ! And how to know the end of a word, or a spelling mistake ? And for some reason I kept using long words and complicated sentences. Patience was indeed a virtue.

Strangely, I was always optimistic except when I had a relapse and my mouth was re-filled with tubes, and I thought ‘blow this, I have had enough’ and signaled to the family ‘pull the plug’ But next day, one of the doctors came to see me, bless him, and told me not to give up but to fight back. It was all that was needed.

Then followed the slow recovery. Frankly, it was at times hilarious. Trying to raise me vertical with hoists and pulleys, and my poor old body hanging below like a sack full of water. Trying desperately to raise a knee 2mm off the bed.. My first words after the trachy was taken out, which sounded like a frog.

But such kindness. One unforgettable incident when still in the Intensive Care Unit. One of the nurses said ‘what are you really looking forward to ?’ I said (I don’t know how as my trachy was still in !), ’seeing grass, and trees with the sun shining through leaves’ Next day, I was transferred from my bed to a sort of LazyBoy chair, and with a bevy of nurses around, was wheeled out of the building and onto a lawn and under tree in the sunshine, complete with all my tubes and whistles. I nearly wept. And at that moment, Celia and Lynn and my sister arrived to visit me and saw this strange group around a man seated like a potentate on the lawn, and said ‘that must be Dad, only he could persuade the nurses !’

So began the slow re-learning of the simplest body functions. How to turn over in bed, how to swallow, how to stand holding on to a rail, how to use a wheelchair, how eventually to brush my teeth myself or use a towel. Being told to get on the floor, and back up onto a bed. Impossible. And, over the weeks with incredible care from physios and OT’s, how to walk. Walking is so complicated and I now look with awe at toddlers as they learn so easily. But they can fall and just get up again. I could not afford to fall.

Then my own wheelchair, and the family able to wheel me out for an expedition down to Hamilton Lake. And lunch in a caf.

I went to hospital on 22 October 2005 and came out on 13 March 2006 from the wonderful Ward 58, the Rehab unit, such a happy positive place. I came back to a home prepared for me, with rails in all the difficult places, put in as a gift by a friend. Our local OT had come out and carefully marked where the rails should go. Our house has 4 layers each separated by 2 steps, so I could not go that way by wheelchair. Luckily our bedroom has double doors leading to the lawn. So morning and night Celia would wheel me down, or up, the slope. A manful effort. Except, one rainy evening, we got to the bedroom door, we somehow tipped me out, and I was stuck with bottom half out in the rain, and barely able to wriggle forward, let alone crawl. Some laughter later, we hauled me into the bed, wet but none the worse.

The bliss of a bath ! With a rope fixed to a beam, and various OT seats and stools, I could, with help, get into the weightlessness of a deep hot bath, and luxuriate. The privilege of using a ‘disabled carpark’. The concern of people in the shops, or cars when crossing the street when they see an old fella with shaky pins. Finally walking a kilometer, then for an hour, albeit slowly. Milestones of recovery.. A year after the onslaught of GBS, I could do most things myself, dispense with crutches, and walk with two Leki sticks. Our local nurses, OT and physio came regularly, to check I was not slacking with my exercises

Now, after 30 months of recovery, I claim to be almost normal. I still have almost no balance with my eyes shut or at night. I hate standing and sit whenever possible. I would rather walk. My capacity for sleep is infinite. I’m sure I look totally drunk when walking. My legs feel stiff and feet are tender as if walking on big blisters. At times I still forget to swallow properly and cough and splutter. My typing takes almost as long to correct as it does to type. How the bank recognizes my signature is beyond me. But I can drive OK (I took a practical test) and ride the quad bike, and even (recently) was again able to stamp in an electric fence standard without wobbling over. And go to meetings without falling asleep, and take part in life again.

Now, approaching 84, what I find fascinating is that I have forgotten what ‘normal’ is, so just concentrate on what I can actually do. And I am eternally thankful I got GBS where one tends to get better, and not a condition that will inevitably deteriorate. But those old nerves seem to lack any urgency in their task of rejuvenating.

Well, it has been something of an adventure, and still is. It would have been impossible without Celia and Lynn and other family members and friends. But life is very good.

Briefly:

  1. A huge thank you to those who have put pen to paper and sent in their personal encounters, and for those in the process of doing so. Its good to get many and varied encounters for others to read and enjoy.
  2. Still a few ‘return to senders’ coming back each newsletter. Please keep in mind to let us know if you are moving and give us your new details.
  3. Remember to let GBSFI know if you would like to receive the International newsletter ‘Communicator’, or let Jenny know and she will pass this on.
  4. If you no longer wish to receive their newsletter please also either let them know or let Jenny know and she will pass it in. Their e-mail is info@gbs-cidp.org

Spring is here – plenty of spring flowers and newborn lambs to confirm that, so have an enjoyable break after a pretty harsh winter and we will be back in December with the xmas newsletter.

Fundraising items available via our trust are:

‘From Diagnosis to Recovery’…an excellent text Written in layman’s terms specially for the patient. No medical jargon or terms you won’t understand.
Authors – Dr Gareth Parry and Dr Joel Steinberg
$30.00 per copy

Our own unique GBS NZ badge. It’s a silver Outlined kiwi with pauashell center and the words GBS NZ written below
$5.00 ea

Our own GBS teddy bear with with lettering GBS NZ on its t-shirt
$7.00ea

GBS notepads on magnetized hangers
$2.00 ea

Please send your orders to:

Jenny,
GBS NZ,
27 Grenville St,
New Plymouth.