Newsletter December 2008

President's Paragraphs

I had the good fortune to attend the Guillain-Barre/CIDP Foundation International Symposium, along with my wife Margaret, in Chicago in November and it was an outstanding occasion. It did however, remind me that our national conference, held every two years, although much smaller in scale, is a very significant event and the information exchanged there is as up to date as anywhere in the world. More about our conference elsewhere in this Newsletter. Let me enumerate some highlights and impressions from Chicago.

When the session “Ask the Experts” was conducted, thirteen neurologists were on stage to answer a multitude of diverse questions.

About 350 people attended and the symposium was very generously sponsored by drug companies, family trusts and philanthropic individuals.

Early identification of GBS/CIDP and early intervention of treatment is crucial to the successful management of the condition.

$12,982-00 was raised one morning on a sponsored, one mile walk, by about 32 people from the conference

Another $3000-00 was raised by raffling a Rolex watch, donated by a philanthropist.

Pain in GBS/CIDP patients is often neglected yet it is part of the experience for 15-85% of patients.

There are about 5000 cases of GBS in America each year; 60% recover after one year although 40% will require some form of rehabilitation; 1000 will need some help after 12 months; the ratio of males to females is about 2:1.

There is a 5-10% mortality rate with GBS.

One report in America estimates that up to $19,000,000 per annum is spent treating people with campylobacter and related illnesses, including GBS.

We are profoundly fortunate to be able to receive up to the minute advice from one of the leading neurologists (on GBS/CIDP) in the world: Professor Gareth Parry.

The next symposium will be in Valley Forge Philadelphia, Pennsylvania in early November, 2010 and I’m already planning to be there. Anyone care to join me?

As Christmas nears I extend festive greetings to you all and may the New Year bring abundant good health and happiness. I look forward to seeing many of you at the conference in May.

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 $89-00 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

Garden Tips December 2008

There is still time to plant another row or two of potatoes as well as a wide variety of summer vegetables such as tomatoes, lettuce, zucchini, cucumber, pumpkin, capsicum, and lots more. Plant them now and get them established before the heat of the summer comes on then you can enjoy fresh veges and salads from your garden during the glorious summer evenings ahead.

Mulching your garden will provide more benefits to your garden that you may actually realise. There are various types of mulch, but the one that provides the most for your garden is Pea straw. Mulching helps to keep the moisture in and the weeds out. Pea Straw is a 100% natural organic form of mulch. As the product breaks down nutrients are released into the soil, at the same time the organic material mixes with the soil to improve the soil structure.

Regardless of your beliefs, Christmas originated as a celebration of the birth of Jesus Christ and all that followed. May you give this some consideration as you join with family and friends this festive season. Stay safe, enjoy yourselves and may Gods richest blessings be yours this Christmas.

Terry

Secretary’s Section

Vivienne and I celebrated her “3 month sign off” by her consultant with a special couple of days hiking in the wonderful Abel Tasman National Park ( right on our doorstep) finishing a tough five hour round trip walk exactly on the hour of her operation back in September – followed shortly by a celebratory glass of vino! We have both been amazed at the way the hip has recovered - including coping with a couple of tumbles in the progress and I am once again happy to be a “kept man” but now somewhat wiser about the pressure, both physical and emotional, that are placed on Carers – food for thought for the inevitable personal regressions to come in the future or a 4th resurgence of my CIDP!

My records show that 230 of you are financial members and I shall be seeking your continuing support in my renewal round once the festivities of the next few weeks are over. In these tough days of ever tightening “charitable purses” the underlying security of a solid and loyal membership base is important for small groups such as ours.

Our Patron Steve Chadwick survived the government change and remains an important voice in Parliament, as a list MP, on our behalf. I am not sure what changes the National Party will make to our Health and Disability support services – all positive I hope, but the battle to get ACC to recognise illnesses such as ours as qualifying for the same assistance as accidents continues and I would refer you to Michelle Smith’s letter elsewhere in this newsletter – help her if you can! On a more positive note – and maybe it’s a FIRST – one of our new members in Christchurch has just succeeded in getting that recognition. She was able to convince ACC that her GBS attack was brought on by a flu vaccination and is receiving appropriate financial support during her recovery – a specific case I know but one that might, if carefully nurtured, lead to a widening of the crack in the thick wall of bureaucracy over this issue.

After what seems years of dogged effort (and a small forest of paperwork) I am VERY pleased to announce that our new Trust Deed has been accepted by all the relevant authorities and is now our governing document. I shall be circulating copies to all Trustees shortly and if any other member would like a copy for their own reference please contact me and I will get one to you. A big thank you to John Chadwick for his patient and practical legal advice over the last long months. The new Trustees have all been duly “documented” and retiring Trustees released from their obligation. If I can persuade the “powers that be” I will ask Jenny to publish a “Rogues Gallery” of the current Trustee Board in the next Newsletter so you are familiar with them all in time for the May Conference.

I don’t know if any of you read the article in last Saturday Christchurch Press entitled “Ill by Mouth” – the story of how Jane Gregg, a senior academic at Christchurch Polytech - fell ill with salmonella poisoning after eating an infected sandwich but then went on to develop a serious disease. As I read the article I thought “aye aye – here is another GBS’er” – but I was wrong as Jane had contracted a chronic case of reactive arthritis – no I had never heard of it either!!. This disease can clear up after 3 to 6 months or last a lifetime – sounds familiar?? The article went on to discuss the high incidence in NZ of salmonella and campylobacter infections – it covered two thirds of a page BUT nowhere did it refer to GBS as one of the potential follow up problems! A reinforcement, if ever there was one, of the decision of the Group Policy sub-committee to take positive action in the coming year to increase public knowledge of our Syndrome – more of these plans at the Conference along with (perhaps) the unveiling of an interesting project our Auckland group have underway to achieve the same end. So be sure to be there!!

And talking of the Conference one of our stalwart members Wayne Hansen would dearly love to attend the conference but needs some help to do so. Wayne is wheel chair bound and a big fella and needs a couple of fit chaps to assist him on and off the aircraft at Wellington/Auckland – Air NZ will provide the appropriate facilities but are not able to “physically assist”. All of Wayne’s other transport and accommodation arrangements are taken care of so it’s just an airport related issue. If you are Wellington based and are planning to come to the conference, are able to co-ordinate flights with Wayne, and willing to help please let me know.

We are looking forward now to celebrating Christmas with our two new grandchildren – both nearly one year old and developing their own (quite different) personalities. Vivienne has persuaded me that Daniel is not quite ready for the electric train set I (or rather he- I am sure) would like whilst Kia seems much more interested in Lego building blocks and junior Mecano that her first dollys! We love spending time with them but end up quite exhausted after a full on day of babysitting – a familiar issue I suspect with many grandparents.

I wish you all the best for the Christmas season and hope that the New Year brings all that you wish for or need. For those of you still recovering from our own special little “problem” may you continue to Get Better Slowly.

Tony

Melanie Trevathic

As some of you are probably aware, Melanie Trevathick has been legally challenging the inequity between those people with disabilities under Ministry of Health Funding, and those under ACC. The latest news is that her application to the Court of Appeal has been stuck out – the upshot is that the government is able to justify such discrimination. Melanie is continuing to fight and hopefully we will hear how she will approach her next step sometime soon. After following Melanie’s case with much interest, and watching the number of segments on Close Up in recent months discussing the inequities, my colleague Denise Ganley and myself decided to start a small campaign. What we require is that people write down their experiences of Ministry of Health funding whether it be for vehicles, housing modifications, caregivers, personal/home help, equipment, and so forth. Your voice is important and if we can raise a collective voice perhaps someone will listen.

The more we have to deal with MOH to receive the assistance we require, the more disillusioned we become and find that the system is not only unfair but it puts many obstacles in the way to achieve the final goal. MOH clients may now not have asset testing, but there is other such strict criteria to be followed making it virtually impossible to get either into or through the system. In applying for vehicle modification, I have been asked to provide a support letter from my PhD thesis supervisor to outline why I cannot study from home – as my supervisor indignantly pointed out to me, and I agree, this is a challenge to my basic human right of leaving the house! I realise I am not the only one in this situation – all the basic necessities that keep us living independently are being denied to us, or made extremely difficult to obtain. While there is no asset testing, there are still limits. Once you have had a vehicle or house modified, you are unable to apply for such funding again, or at least it is extremely difficult to do so. I am led to believe that the housing modification allowance has not changed in 14 years despite the increase in cost of living. Over the last 15 years of being a part of and working in the disability sector I have not seen a huge improvement in any of the services despite the government apparently increasing the budget. We are not talking about a few hundred dollars difference but hundreds of thousands of dollars if all is added up equitably. Coupled with this are the long waiting lists. We are talking about 24 hour care for someone on ACC to remain in their own home versus those on MOH funding being told they should be in a rest home. We are talking about ACC clients having more than one wheelchair to suit their needs versus MOH clients waiting for up to a year (or more) to receive one chair or being told they should modify their house to accommodate the one they already have even if that chair no longer meets that clients needs. We are talking about full house modifications versus what $8000 dollars will buy. Furthermore, we have to jump through many hoops to get what we need – life is a battle every day, why should we also battle for those things that are deemed a necessity and would make life much easier for us physically. For many, having the right equipment reduces fatigue and helps with safety issues leaving us with more energy to channel into work or leisure – both important for our physical and mental well being.

Please can you write a letter outlining your own story and send it to me and if you know of anyone else in a similar situation, please ask them to do the same thing and send their email to me medievalscot@xtra.co.nz, or post it to me at 24 Lauren Grove, RD2 Papakura, Auckland. The more letters we have the more of a collective voice we will have to take this further. I intend to start with discussing the outcome and quantity of the letter with the national papers, followed by TV and then take it to the MPs – after all, it is election year. People need to agree to their letter being used by the media and/or copied and sent to MPs, or used by Melanie in any further action she will take, and I will take it that any letter sent to me means the author is in full agreement of this. I am not prepared to sit idly by while we are treated worse than second-class citizens. Your help will be greatly appreciated.

Michelle Smith

Guillian–Barr Syndrome Support Group New Zealand Trust

Annual Report of the President

Introduction

Annual reports usually begin with a comment like “It gives me great pleasure…etc.” but I can think of no other organisation I belong to that gives me so much pleasure to be able to report on it’s activities. I report without hesitation or doubt that the Guillain-Barre Support group is an essential organisation for patients, families and caregivers who come in contact with GBS or CIDP. When we visit, worried, bewildered and very sick people in hospital and we greet them and say something like “Hello, I had GBS a while ago and I understand how you are feeling.” You can see their eyes change and you know that your visit is worthwhile.

Thanks

To all members who have visited hospitals to comfort GBS and CIDP people I say a big thank you. Your compassion is priceless, valued and praiseworthy. There are a few other people deserving of our thanks, in particular, Jenny Murray who volunteers her time to sustain the network and to reassure patients and families coming to terms with this perplexing malady. Jenny’s on-going, multi-faceted, contribution cannot be measured by any normal method and we thank her without reservation. Professor Gareth Parry is a busy academic working in a large American University with a heavy workload but he is consistently available to answer difficult medical questions and to provide quality guidance and support for us. Other members (of the Trust) contribute in other ways: medical, looking after our money, keeping records and legal issues in line, responding to emails and generally providing the benefit of their experience for the benefit of the GBS/CIDP fraternity: Tony Pearson, Peter Scott, Forbes Bennett, John Davies, John Podd, Julie Rivett, Terry Watton, Don Martin.

Special thanks too to Steve Chadwick MP who is our Patron. Her on-going support and sincerity is greatly valued by all who have worked with her.

Numbers

Currently we have about 200 members (with a few still to pay). The number fluctuates as some people, upon recovery from GBS/CIDP do not wish to continue their association with the support group. Other members renew their contribution and renew their commitment to provide services to those who develop the illness.

The Newsletter is distributed to about 400 recipients on a regular basis. The Newsletter is an important component of our operations and contributions are always welcome. Thanks to Jenny Murray who produces the Newsletter on a regular basis.

Conference

The bi-annual conferences (2003, 2005 and 2007) have been highlights in the activities of the support group. Assembling great speakers and telling inspiring stories of loss and recovery along with the meeting and greeting, networking and socialising are enormously valuable. Another conference is being planned for Auckland in 2009.

Challenges

All small organisations face challenges and we are no different. We face the following challenges:

  • maintaining membership
  • maintaining quality services to those in need
  • maintaining a financially sound organisation
  • gathering sponsorships to extend our services
  • planning strategically for future change.

Your elected representatives will be confronting these issues, and others, as they arise during the coming year.

Thank you again for the privilege of serving as your president.

Bob Stothart

Finances.

Our group is run by volunteers – a group of very enthusiastic and enterprising individuals with a common cause. However, this group doesn’t run on fresh-air and we require some help along the way from others to accomplish what we do.

Since day one, back in 1997, we have had the backing of the Taranaki Savings Bank Community Trust. They were there at the beginning and provided us with our very first grant to get established, and each year we make application for some help to fund basic expenses like postage, phone expenses, internet expenses, stationery, and the like. We have never been turned down, and our grant varies according to whatever else Taranaki Savings Bank Community Trust has been asked to provide finance for in any given year. This year we were fortunate enough to have $1400 granted to us for general expenses. Thank you so much TSB Community Trust.

One of our members belongs to a Lodge in Auckland, the ARA Lodge No. 348 IC Charitable Trust. This lodge has made our group one of its benefactors and annually grants us money. This year they have given us $2500 and we are truly most grateful for that money.

And last, but by no means least, we have our annual $10 membership fees, and smaller donations made by members along the way. These all add up and this year have totalled $1936.

Without this type of input we could not continue, and a very special thank you goes out to all those who have helped us to help others along the way.

Update on Courtenay –

For those of you who came to our 2005 conference in Wellington, and listened to little Courtenay Bryant speak to us all about her encounter with GBS, I have an update for you. Courtenay was just eight years old when she and her mum Donna, and her nana came along to Wellington. Courtenay told us all about her GBS experience, and how it had affected her.

I was in touch with her mum Donna recently, and Donna tells me that Courtenay is doing really well. She has played a good season of netball this year and was even awarded a trophy. Courtenay also attends St. Johns Cadets and loves it. She is really doing well.

Billets for conference:

We have just a couple of names of persons in the Auckland area who would be willing to billet out of town guests for the duration of the May 09 conference. Thanks to those who answered.

We also have just a couple of people who require billets.

If there are any more persons out there requiring help with billetting, or have rooms to spare, then please contact Jenny, Tony or Bob and we will try to help out.

Encounter No1 comes from Robyn Luke, Wellington.

Parenting after GBS – the best rehab EVER!

Robyn Luke and family.

Starting a family was a difficult decision for my husband and I to make. In 2003 I spent five months in hospital recuperating from GBS and Miller Fisher as well as years of outpatient rehabilitation. Virtually no research is available regarding pregnancy or childbirth due to GBS and MF being so rare and individualised. Practically, how would I cope with lack of sleep, lifting a baby, changing nappies and breastfeeding when I found showering myself so tiring that I needed a rest afterwards? We trusted that if my body couldn’t handle it, I wouldn’t conceive, and pragmatically we wanted to leave time to explore other options for becoming parents. By now, I was 33.

Surprisingly, it didn’t take long to get pregnant and Baxter Leslie Luke French was born on 6th March, 2007, weighing a healthy 3.8 kgs. I had my ups and downs health-wise after the birth, including a mild GBS relapse, but with a lot of help from family and friends, life got a little easier.

Having lived with mobility and fatigue issues for a few years prior to Bax’s arrival, I am used to adapting daily activities to suit my disabilities. After a discussion with a hospital midwife, she referred me to a hospital social worker. I now have a personal carer who visits three days a week for an hour to help with making the bed, washing, packing the dishwasher, preparing snacks and lunch – general household duties that would take me all day to achieve. I plan most outside activities on these days and stay closer to home on the others.

Equipment-wise, the focus is on energy saving. I have couch “raisers” (wooden blocks) to make it easier to stand up from a sitting position and have placed foot stools in strategic positions around the lounge so that I can sit to pick up Bax from the floor. I also have a shower chair and stools for the kitchen bench so as to avoid long spells of standing. There’s a bed next to Bax’s cot so that if I lose my balance, we both have somewhere soft to land. On days when the fatigue is intense, I put Bax in the stroller to avoid carrying him. Most importantly, I rest whenever he goes to bed, regardless of whether I’m tired or not.

It took me a couple of months to have the strength to change Bax’s nappies. Dressing him was also testing and I found that clothing him in bigger sizes made it easier. Domes and buttons were a problem, but I got better with practice. A friend who was born with only one arm assured me that there are no rules stating that babies have to wear singlets – that is his biggest challenge – so I applied that theory and often didn’t button domes around the crotch.

Venturing outside the house takes a lot of planning. I can drive and have a mobility parking permit, so I use this regularly in town when I need to get out of the house. Mobility scooters are available at some shopping centres and can also be borrowed from the Wellington City Council so we can get about by ourselves. I try to walk most days and enjoy taking the buggy as I don’t need my walking stick – freedom from stares of curious folks! I know the routes near my house where I can stop and rest and make sure I have food and drinks for Bax in case my stop-overs are longer than expected.

Most people are generous at offering assistance and are quite understanding. It’s easier to let people think that my biggest challenge is my mobility as it is more visual, when in reality it’s the fatigue that is the most restrictive. I can only imagine how difficult it would be to have a mental illness that isn’t as tangible as a walking stick.

I have suffered several crises of confidence with each of Bax’s developmental phases but after a few weeks of adjustment and tweaks to our routine, we eventually adapt. I started initiating voice commands early and most of the time he comes to me for a nappy change or something to eat. I’ll probably get infant leads for when we’re outside and he eventually starts walking. He’s getting quite heavy now and know that one of these days I may not be able to carry him to bed - regularly lifting 13kgs has done wonders for my biceps though!

Taking him to the park has been left to the weekends when my husband can come with us, or limited to play dates with other kids and parents (which is more fun anyway!). Once he goes to school and his peers become important, I hope he won’t be embarrassed of his Mum who can’t do the same things as other Mums and walks like she’s drunk.

Bax is truly delightful and thankfully has inherited my husband’s laid-back attitude. He has encouraged me to expect more of myself physically, mentally and emotionally – he has truly been the best and most rewarding rehabilitation program EVER!

Everyone faces their own challenges when raising children. My family’s testing times are no worse than anyone else’s, just a little different. It would certainly be more helpful if there were support groups for parents with disabilities, but I’ve yet to find one. Should you know of such a group, or would like to talk to me about starting one, please email me at robsmatt@yahoo.com.au.

And…footnote! Rob and Matt are expecting baby No.2 in March. Congratulations guys!. I’ll keep you posted in the newsletter when Baxters little playmate arrives.

Jenny.

Our thoughts go to Diane Fraser at this time –

Diane and her husband Paul were living and working in the United Arab Emerates – Paul as an Intensive Care Nurse, and Diane as a radiologist. Both were working in the same hospital and life was fantastic. Then, one horrible night back in 2003, it all changed. Paul, after a sequence of problems, was diagnosed with severe GBS, and from that date was a tetraplegic living in a resthome unable to do anything at all for himself. He struggled day in and day out, and his wife Diane was always there beside him and supporting him. They were back in NZ, living in Hamilton when in October this year Paul, in his motorized wheelchair [which he controlled with head movements], decided that he had endured this struggle for long enough, and managed to slip away in his wheelchair and ended his life in the Waikato River. This has been a really horrific time for Diane who has barely left her husbands side since 2003 when this horror all began. I think those of you who have experienced the worst of GBS will understand where Paul’s thoughts were in doing this, but for Diane this has been one horrific experience.

From all involved with the GBS support group at this time – our most sincere sympathy Diane.

Our sympathy also goes to family of Sherry Colmore who passed away in September after a horrible year of illness.

To the family of Georgina Banks, who died in Wanganui in September also.

To all who have suffered loss this year – our sincere condolences.

Forums -

Lillias Morgan, our webmaster, is no idiot, but is making attempt here to help our members become familiar with the forums made available via our website www.gbsnz.org.nz There has not been a lot of interest in these forums, and Lillias would like to familiarise members with the site. I asked her to write us an ‘idiots guide’ to using the forums – so we can all have input –

An idiots guide to NZordforums.org.nz

(Written by an idiot!)

1.What is this?

Nzordforums.org.nz is a website for unusual medical conditions, which includes Guillain-Barre.

2. Who can use the site?

You, me, anyone who has an interest in GBS.

3. Do I need to register?

Yes, you do. Simply follow the on screen prompts. Name – password. Even an idiot can do that!

4. Can I post a message?

Yes.

5.Can I answer a message?

Yes.

Encounter No. 2 - Neil Hickland, Carterton

Guillian-Barr - my experience

I took early retirement at age 50 from post office.My wife Aurea and I have 4 surviving children (our oldest,a son) passed away at age 25 from Fredricks Ataxia and a heart defect.

We purchased a 50 acre block at Gladstone ,Wairarapa.We sold this after 8 years and bought a 33 acre block at Carterton Wairarapa, farming sheep and cattle,mostly trading,and breeding eye (heading) dogs for our own use,and selling surplus pups.This resulted in both of us giving up golf after many years!! Not because of work,but loss of interest in playing reguralily. I was employed for 3 years and 6 weeks shepherding on an hourly,and as required , arrangement until I was dealt this difficult hand to play!!! It all began -with diarrhoea on 19 07 00. On 25 07 lifted sheep,thought wool had fallen out (as happens with sheep stressed).Looked at hands,no wool,just “a funny feel in fingers”.finished worked afternoon,had dinner,awoke 5am “skitters’ gut pain,felt weak,difficult to get into truck,had neighbour(who is also good friend) come to work to assist with lambing beat.Couldn’t get on 4 wheeler,so rang boss, friend lifted me into truck,he drove me home . 26 07 Aurea took me to the Dr. By then couldn’t lift arms above shoulders.

His 1st questions were had I been drenching stock etc.? No. Take your jersey off. I B well cant. Hop on bed. Cant. Sit then,will do reflex tests,blood pressure ,check heart etc ,for stroke!! No reflex,not stroke.

Believe you have a rare disease,but nearly all recover almost fully,it`s called Guillain Barr`e.I will give you steroids to take for a week.You will have to be reviewed . When will I see you,next week? I think it may be sooner than that,I`ll give you a letter to the hospital,if you deteriorate go straight there. How will I know when that is?. You will know,you will have trouble with balance etc.

27 07 00 Thursday - slept well ,went to toilet,couldn’t lift off it!!! What the!! Aurea lifted me off,dressed,tried to prepare breakfast but couldn`t open kitchen cupboard!! felt weak. Aurea went to farm 2k away.When she got back after 1 hour, I had rung son-inlaw to take me to hospital,as couldn’t get off lounge settee. Arrived A&E.11am, Dr checked all over again,told me get off bed. I Said ‘cant’. Ok I`ll not let you fall. CLUNK,straight on floor and 98kg too heavy for him and Aurea to lift.He admitted me to medical ward .

Friday done lumber puncture,successful only after Registrar took over when 2 (nurses?) failed. Result was blood tainted,but Wellington prescribed Haemoglobin (I tkink) ,started 8pm,completed 2am Saturday!!!

Saturday,ambulance to Wellington,arrived 1pm,seen by neurolgist,done tests,most of which were -1 to -5, -5 being no reaction!! He told me near full recovery,would be weeks and months rather than days or weeks. On haemoglobin for mandatory 5 days, massive back aches,virtually paralysed from neck down,and constipated !!!!

On following Tuesday,had the electric shock test, Yeeeow!!!

Neuro believed had been afflicted longer than symptoms appeared !!

Wednesday returned to Masterton hospital by ambulance .Still constipated,in isolation ,as is everyone returning from Wellington hospital due to the ***** (resistant bug).Thursday,after 12 days of constipation,finally “Bingo”.Then began the introduction of physio.

The swimming pool was the best relief of paralysis,as I could walk alone holding the side rail!! They wheeled me to pool,put me on sliding hoist,lowered into pool,then return after excersing.As an aside we have since had a new hospital built,but horrors,no pool!!!Aurea used to come each day and would dry and dress me,return me to ward. She also went to physio daily,I think to encourage physio in saying “just 1 or 5 or 10 more.(I sometimes used to “refuse”I know they didn’t really understand how fatigued I got.(Heard that before eh ?) Early on ,after about 1 month,I could lift my glasses, tried to lift half kilo on pulley, but hands slipped off handle.We decided to tie them on,so bandaged them on!! At that time couldn’t raise arms to shoulders. Physio progressed till I could “shuffle” about 10 metres unaided if no obstruction on floor such as a mat or electrical cord ,because I couldn’t lift my feet off the ground.

On Friday 02 09,while being supported between paralel bars,I dropped and hit my head on floor,dazed and no feeling for about 2 minutes!! Doctor checked me out,said could go home for (2nd) weekend leave.

Woke 6am,turned my head sideways and white lights flashed through my eyes!!! Tried again,same.Called hospital,got ambulance,Dr said balance affected by “little ball-like things being dislodged from small hairs inside he ear canals.Said they would likely re-settle,no damage done. 15 09 head scan in Wellington (hospital but covering) and all ok.Occasionally get small flashes if I turn head suddenly,but not a problem.

Released from hospital 19 09, travelled weekdays to hospital for physio and shower. Able to walk up steps out of pool 29 11 and shuffle to shower.Marvellous!!!Pool therapy ceased 08 01 01.Occupation therapy had steps (75 mm high ) built for entry into house with hand rail. I could only use them by going sideways one foot at a time (lost sweat at that!!)Also installed wet floor shower large enough to take wheelchair and another person .(I was using wheelchair when released,then onto “walker”.I couldn’t get off a chair,so Aurea (or whoever) would lift me (Cuddly too)!! O.T. also provided raised toilet seat, shower stool,sock assist,and hand held “lifter” to pick up things on floor etc.

About 5 months to touch my thumb to my small finger,about same time to lift heel off bed. Drove truck at farm 26 Dec ,(reaction clutch too slow, brake to accelerator same.Car at farm 02 Jan 01,but not confident to go into town until about end January.It took about 6 months before I would drive any distance alone because of fatigue ,scared would drop off to sleep (which I did a couple of times,but Aurea was keeping me under close watch (And still does) I still have difficulty climbing over fences,stock yards etc, getting up off the ground, cant hold a golf club with enough grip to hit a ball any distance.Can’t do vacuuming,ironing,washing, (& never have ha ha) but can use a chainsaw,hammer shovel etc.Must be the thicker handle allows better grip.

My hands and feet seem to be my lasting outcome of this affliction. Aurea and I have made ourselves available as visitors to newly diagnosed patients in hospital (or anywhere else) and have had good press through the Wairarapa Times-Age.When first in Wellington Hosp,neuro surgeon informed us of GBS,we contacted Jenny,who got Peter Scott to contact us.He arranged to come over from Palmy.What an experience that was to us to see the outcome of a sufferer,as at that time I was home,but hardly able to walk.To Peter,thanks and will have contacted you before this appears (if it does) The Wairarapa has had earlier this year 3 confirmed and 1 suspected new cases.We are renowned over years for high incidence of GBS.Since the publicity recently,Wellington Regional Public Health,Lower Hutt,are researching the cause.Many believe the flu injection is responsible.Of the 6 people I have spoken with here,I am the only one who had the injection!!(one week prior) Aurea and have been having them for about 25 years.

Last year I had the injection Monday,was in hospital with abcessed pancreas Tuesday!!! The injection could not react that fast (confirmed by specialists!!)

Good luck,enjoy what you have while you can

Christchurch Hospital requires a speaker!

Is there someone down in the general Canterbury area who is interested in talking to the Physiotherapy Department at Christchurch Hospital. These people are most interested in hearing about your experiences with GBS? They are looking for someone to do a talk around May 09 as part of their professional development, to give their therapists a greater understanding of the patient’s perspective of the illness.

They are most interested in people who have been patients, and diagnosed with GBS, CIDP or Miller Fisher Syndrome. The talk would take approximately an hour and the group would be made up of about 40 medical people.

Please contact Caroline McKean – 03 3640680 (physiotherapy department) if you are willing to help.

Also needed in the Christchurch hospital area are some visitors who would be prepared to visit newly diagnosed patients in the hospital there. Please call Tyrone Burrows 03-3027029 or contact Jenny if you are interested in this role.

New Post Codes - If you do not know your new post code, then go to www.nzpost.co.nz and you can find out there what it will be, and let us know. Thanks.

Have a safe and happy xmas everyone and we will all be back again next year.

From my family to yours……..Merry Xmas.

Jenny