Newsletter March 2007

President’s Paragraphs

All thoughts are directed to making the 2007 Conference the highlight of the year for numerous reasons:

  1. it is the only conference in New Zealand which focuses on GBS and CIDP;
  2. the presenters will be up to date, open to questions and willing to help us understand this perplexing neurological malady;
  3. everyone attending shares similar experiences of the illness and (hopefully) recovery so meeting new people and making conversation is easy;
  4. patients, caregivers, families and friends can all contribute to the success of the conference;
  5. it is a great opportunity to greet old friends, make new friends and be at ease in the supportive environment;
  6. the conference experience gives everyone confidence that we can ‘deal to’ GBS and CIDP;
  7. the medical information shared with those attending will be as up to date as anywhere in the world;
  8. afterwards you are equipped to share information with others who are coping with GBS and CIDP;
  9. it is a wonderful social occasion, welcoming and friendly with an over-riding atmosphere of informality and helpfulness;
  10. the venue is quite close to Wellington Airport and is suitable for people with disabilities;
  11. Wellington is a great city to spend time in: Te Papa, Cable Car, Karori Bird Sanctuary, Downstage, Wellington Museum, the waterfront walk, Waitangi Park, Kirkaldies, Unity Books, Red Rocks, Brooklyn Windmill and the opportunity for great coffee.

The presenters include Professor Gareth Parry, a New Zealander who works in America and happens to be a world authority on GBS and CIDP. Gareth has contributed to our two previous conferences and is noted for wanting to answer everyone’s questions before the conference concludes.

Dr Forbes Bennett is an intensivist (anaesthetist) at Hawkes Bay hospital vastly experienced in dealing with life and death situations. Forbes attends to the high proportion of GBS cases which are admitted into intensive care units and he will address the question of acute care and management.

Val Simpson is the sister of our Patron Steve Chadwick. Many will remember that Steve spoke at our first conference and mentioned that her sister was then in intensive care in Melbourne Hospital. Was there a dry eye in the audience? Val will share with us some of her experiences during her decline and recovery.

Vandy Pollard works for the Health and Disability Consumer Advocacy Trust and will discuss issues of patient advocacy and patient rights.

Discussion groups feature on the conference programme and this provides a chance to share personal experiences and to compare notes.

The end of Saturday features a FORUM which is another chance for anyone to ask questions of the ‘experts’.

Let’s not forget the Annual General Meeting on Sunday morning which is your chance to participate in the Guillain-Barre Syndrome Support Group New Zealand Trust.

I have spent a large part of my professional life attending conferences of various kinds, in many different places around the world, including two GBS conferences in America and I always come away with a head-full of ideas and the determination to do better, to try harder. Make a commitment now to join me 27-29 April in Wellington.

Bob Stothart

ANNUAL GENERAL MEETING

The 5th Annual General Meeting of the Trust will be held in Wellington on Sunday 29th April 2007, the day after the Conference, at the Brentwood Hotel commencing at 9.30am.

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 (we have one current vacancy) and should be lodged with the Secretary as soon as possible but not later than Thursday April 26th. 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

Secretary’s Column

Well after a fairy dismal January summer arrived in Nelson (and I think pretty much the rest of the country) with a bang in February – right on cue for Vivienne’s sister and her husband who arrived from the UK for a 6 week visit and we have spent most of the last month with them touring all parts south of Dunedin round to Te Anau and Queenstown – this is certainly a beautiful country although it beats me why the good Lord invented sand flies!!

By now everyone who has renewed their memberships should have received a card and receipt – let me know if you haven’t. There has been a good response to renewals although I shall shortly be chasing the 40 of you who have yet to find me that $10 – cheap at twice the price most of us will agree I think. A big thank you as well to all of you who were able to dig a little deeper and make an extra donation to the group coffers.

Likewise I am pretty much up to speed with acknowledging conference registrations so keep them coming please. I have press ganged Vivienne into manning the registration table at the Brentwood and I know that task is so much easier if there has not been a last minute rush of late or “on the day” registrations. So, if you are one of those “offenders” and incur the sharp side of her tongue when she is hunting in vain for your Registration Pack, I shall have no sympathy!!

My frustrations with getting into contact with “my area” new sufferers continue – I was chatting to a close neighbour here in the Tasman district – he had just left Nelson Hospital after a reasonably severe bout of GBS and a couple of weeks rehab – now continuing at home - when he told me that his consultant had mentioned that there were two other cases in this immediate area that had occurred concurrently with his attack. I, of course, still don’t know who they are so cannot offer support – it’s VERY annoying!! Perhaps I’m going about things the wrong way and maybe I should join the local golf club – or whichever sport neuro-consultants follow - and try and work the “old boys” network!! – certainly our ex President Terry Watton seems to have a good working relationship with his Waikato hospitals – perhaps you can give me some tips when we meet again at the conference Terry!

The New Year is now well and truly with us and with it lots of plans, hopes and aspirations for the months ahead (although my diet resolution took a real knock with all those Lattes and Muffins down Invercargill way!) Our family will be one member less from now on as my Mum passed peacefully away a short while ago – and I guess we are next (a scary thought) but, I hope like you all, we plan to make the best of each day left to us.

I look forward to seeing as many of you at the Conference as can make it. It truly is a special experience which if you haven’t been is difficult to describe but I come away uplifted in spirit and enhanced in knowledge and although I consider myself (so far at least) as one of the luckier GBS sufferers it helps me a lot to deal with some of the ongoing limitations that this “b” syndrome has left us with.

Tony Pearson
Secretary

Gregory’s story…..as written by his mum. (2006)

Bradley (7), Gregory (4), and myself all had a bad tummy bug. The bug had spread through the majority of Whangarei. Bradley had it for one day, but Gregory and I seemed to take several days to feel better.

Two weeks later Gregory had headaches and found it painful to sit on the toilet (I thought it was his bottom from the diarrhoea), but it the hurt was behind his knees and thighs. At night he found his skin itchy. I took him to the doctor and she thought his headaches could be sinus as he often did get headaches. He was given an antibiotic. That was Tuesday after Labour weekend. On Thursday I took Gregory back, but went early as by that stage he found it difficult to walk. The doctor sent us to Whangarei hospital.

We were seen straight away. His blood pressure was very high, had headaches, and found it difficult to stand alone. Walking was a struggle. The pediatrician mentioned G.B.S. but said tests were needed to rule out many possibilities including lupus, polio, and a brain tumour.

The following day is first test was his eyes, then brain scan and lumbar puncture which was extremely painful for him as he had to scrunch up into a ball. It was a long day for poor Gregory. I was told about 11.30 p.m. that night that Gregory had G.B.S. They explained it could affect his breathing, so I sat and watched him all night just in case.

He was monitored in hospital. Greg had a bad cough and found it difficult to cough. He was in a lot of pain. It was painful having his blood pressure taken because of it squeezing his arm. Even for me to cuddle him was just too painful and his movements were limited and painful. He had little appetite and could not grasp hold of even an ice-block stick. He could tolerate very little. I don’t think the doctors realized how much pain he was in.

By the following Wednesday his voice was high pitched, and during the night his mouth seemed slightly lopsided. The next day the doctor ordered another chest x-ray but before it arrived Gregory had vomited and his left lung collapsed. They said he had pneumonia. We were taken down to ICU where he was prepared for our helicopter flight to Starship. Gregory and I had to leave my parents there at the hospital - shocked and distressed by what they had just seen.

The ICU staff were amazing. He had two doctors and a nurse with us on the way to Auckland. On arrival we were taken to PICU where many staff took over Gregory’s care. PICU is am amazing place where is care was the best.

The Neurologist, Dr Rakesh Patel, came to see Gregory and confirmed Guillain Barr Syndrome. The following day they did an electrical reading. This was extremely painful for Gregory.

Gregory was helped with his breathing for four days and was on medication for high blood pressure, chest, morphine for pain, and was fed through a tube.

It was so sad to see Gregory’s tears when he heard the nurses going to suction him He couldn’t move, but his eyes would dart around the room.

There was a neat moment one day. Greg had been saving his pocket money before he got sick and when I asked him to squeeze my finger if he wanted his pocket money this week……and he squeezed my finger. What a great feeling knowing he could still understand and communicate.

Across from us in the PICU room was a newborn baby and that is where Gregory had been four years before, born eight weeks early due to my pre-eclampsia and he needed help to breathe then too. He has had his share of hospitals.

Gregory loved having his hair combed, and his head rubbed. It helped him relax and even one of the nurses would comb his hair for him when I had to go out of the room.

After five days in PICU we were moved to the high dependency unit in the neurological ward. Gregory started moving his arms and his hands could hold something, enough for us to start playing snakes and ladders. We played often each day, neither of us got tired of the game. It was so neat to be playing.

Gregory’s feed tube became a problem, he hated it when they fed him to the point where he would vomit it up afterwards. So he was fed at night and during the day he tried to hold the end of that feed tube and now want to let go. He was highly suspicious of everyone who came to see him and understandably took a long time to warm to people.

The next few weeks were hard going. Gregory slowly started to get movement back, but it was all so frustrating. He had lost considerably weight. Change was difficult for him. Changing rooms, wheelchairs, nurses – it all took him for him to adjust.

The whole experience was huge for Gregory. When he first started physio he was placed on a mat and he just lay there, he couldn’t roll over, he couldn’t lift himself up. It was devastating to watch. He also found it difficult going back to nappies! He said people might think he was a baby.

Bradley, his older brother, had stayed in Whangarei for a month with family but was feeling the strain of it all so he came down to be with us the last few weeks. It was wonderful to have Bradley with us and it cheered Gregory considerably.

His motivation to get moving improved. While we waited several weeks for a bed at the Wilson Rehab Centre in Takapuna, Auckland, Gregory’s improvement got to the point where he was too well for the Wilson Centre.

So on December 11th we were transferred by ambulance back to Whangarei hospital.

We have met many wonderful people through our experience; nurses, doctors, other patients, the volunteers, especially Grandma volunteers who would come and sit with Gregory once a week while I did some shopping. Gregory’s kindy here in Whangarei were so supportive too.

The staff at Whangarei hospital were amazed at how well Gregory has done. We stayed there only one night. They felt he would do better at home and be less chance of him catching a bug.

Gregory has made great progress at home. He has a wheelchair for out-and-about, but at home he does so well getting around. He can’t wait to be able to run and jump around again. We have physio once a week.

It has been an extremely frightening time for us all, but we have left many children back at Starship who are so sick, we are very grateful to have our Gregory back with us.

Pam Thompson,… (Gregory’s mum.)

Message from GBSFI.

GBSFI having problems with addressing mail to NZ…….when you contact them for a Communicator, make sure you have the address absolutely right (i.e. name, street number, street, suburb, city, postcode). There has been confusion between the suburbs and the cities and this has resulted in some of the Communicators going back to US undelivered. If you have expected a Communicator and it hasn’t arrived, then let me know and I will help you sort it the way GBSFI wants it.

Jenny

Obituaries –

This has been a pretty sad quarter for losses amongst our membership and associates.

Mr Paul Ferris died in November 06

Mrs Annie Kisby passed away in December 06.

Mr Winston Hargraves passed away December 06 also,

Dr Parry on Flu Vaccines…..

Dr Parry is sick of being asked this question (mostly by me) each year, and this years reply to the question of ‘should I, or should I not have a flu vaccine’ is –

As always, the advice is that the risks must be weighed against the benefits. This year's 'flu has been a particularly virulent form and there have been many deaths, inlcuding about 6 here in Minnesota. Most people had other illnesses but one healthy child and one reasonably healthy adult in his 40's have died. It is always hard to predict what each seasons 'flu will be like but this year's experience has been sobering and I would definitely recommend that a patient who has had GBS should go ahead and get vaccinated this year. It is a little more difficult with CIDP but even there I am recommending that they get the vaccine unless there is a clear history of worsening with vaccines in the past.

Fatigue Study.-

Margaret Paterson is Information Specialist at the Centre for Postgraduate Nursing at the Christchurch School of Medicine, P.O.Box 4345, Christchurch. Phone –03-3643854 e-mail: Margaret.paterson@chmeds.ac.nz

Margaret is looking for participants in her Fatigue Study. I have been in touch with a few of you about this, and if anyone is interested in taking part please contact her direct.

New informative GBS book out shortly –

Called simply.. ‘Guillain-Barr Syndrome’

Ever wished you could open a book about GBS and understand it? Its here!!

Dr Gareth Parry and his associate Dr Joel Steinberg MD have co-written a book especially for the lay person. Its due for release any time now, so if you would like a copy please let Jenny, Tony or Bob know and we will put your name down.

Our contact details are on the letterhead.

Here’s food for thought:- [this one is doing the rounds on e-mail.]

An elderly Chinese woman had two large pots, each hung on the ends of a pole, which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water, at the end of the long walk from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do. After 2 years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. "I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house." The old woman smiled, "Did you notice that there are flowers on your side of the path, but not on the other pot's side?" "That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years I have been able to pick these beautiful flowers to decorate the table Without you being just the way you are, there would not be this beauty to grace the house."

Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding. You've just got to take each person for what they are and look for the good in them.

SO, to all of my crackpot friends and relatives, have a great day and remember to smell the flowers on your side of the path!

 

The following article was brought to our attention recently, and is just as relevant now as it was when published a few years back………..

Disability After “Recovery” From GBS

Kleopas A. Kleopa, M.D., Neuromuscular Fellow
Mark J. Brown, M.D., Professor
Department of Neurology, University of Pennsylvania
School of Medicine, Philadelphia, PA

Guillain-Barre syndrome (GBS) is the most common cause of acute neuromuscular paralysis in developed countries. Most patients recover and return to productive, independent lives. In a recent representative survey of 140 GBS patients, 70% made a complete neurological recovery within a year, 22% could walk but were unable to run, 8% were unable to walk unaided, and 2% remained bedridden or ventilator-dependent after a year. Thus, despite the good prognosis for recovery, GBS can cause long-term disability. Persisting disability is largely the result of weakness from the motor nerve injury that occurred during the acute illness. An estimated 25,000 to 50,000 persons in the United States alone are experiencing residual effects from the disease. Most research on GBS has focused on understanding the cause and finding better treatments. Much less attention has been paid to the long-term disability caused by GBS. In addition to the previously mentioned residual weakness, there may be pain, fatigue, psychosocial dysfunction, possible relapses of the illness, and late progression of weakness.

Pain

Moderate to severe pain is a well-recognized symptom during the course of acute GBS. For some patients neuropathic pain, consisting of abnormal painful sensations, may persist after recovery from the disease. In a recent prospective study of 55 GBS patients followed for up to 24 weeks, pain occurred during the course of the illness in almost 90% of cases. Whereas deep aching back and leg pain were the most common early on, abnormal painful sensations and myalgic-rheumatic type pain were observed during the recovery period. Musculoskeletal pain was common in association with physiotherapy. Painful abnormal sensations in the extremities tended to persist after 8 weeks, and were still present in some patients after 24 weeks. In two cases the pain was severe. Overall, pain can be effectively relieved with an escalating regimen of analgesic medications, starting with nonsteroidal anti-inflammatory drugs or acetaminophen, and if necessary including oral or parenteral opioids. Even severe pain can be controlled, sometimes with the addition of patient-controlled analgesia. In a large series of GBS patients treated for pain, these medications were generally effective, and no adverse effects on breathing function or narcotic addiction occurred.

Chronic fatigue

Fatigue following GBS is underrecognized by neurologists and rehabilitation physicians, because attention is directed toward the more objective weakness and sensory disturbances. In a recent study of 83 patients recovering from GBS, severe fatigue was reported as one of the three most disabling symptoms by over 80%. The incidence of fatigue did not correlate with age, or motor and sensory residual deficits, but fatigue was more common in women. Fatigue was unrelated to the time since the acute phase of the GBS, a median of 5.2 years in this group. Another study of 123 GBS patients, evaluated 3 to 6 years after the acute illness, concluded that psychosocial functioning, especially in areas such as sleep and rest, alertness, emotional behavior and social interaction, was seriously affected. This was true even when "complete" physical recovery was reached, or only minimal residual deficits were present. Deconditioning and less engagement in physical activities were discussed as possible explanations for persistent fatigue. A supervised training program and low-intensity aerobic exercise may reduce daily fatigue, with improvements in activities of daily living and functional capacity. Specific treatments for other factors associated with fatigue, such as sleep disturbances, pain, and daytime inactivity, are available.

Psychosocial dysfunction

Reports of long-term psychological sequela after GBS are rare, although this issue may be a major factor in psychosocial dysfunction of patients recovering from the disease. Many psychological factors could contribute to chronic fatigue and social dysfunction, including fear of disability, inability to cope with physical limitations, and depression following a major illness. The role of depression in psychosocial dysfunction after GBS is not fully understood. The sickness impact profile of GBS survivors was found to differ from the profile of other patients with depression. Nevertheless, further study of the long-term psychological impact of the disease is necessary, and depression should be considered on an individual basis when appropriate. Both supportive psychotherapy and/or pharmacologic treatment can be effective.

Post-traumatic stress disorder (PTSD) has been reported in a patient following severe GBS with paralysis and a prolonged intensive care stay. The GBS-induced PTSD shared the features of PTSD seen following other traumatic events. Even such profound psychological problems following GBS can be treated with supportive psychotherapy and appropriate medications. They may at least in part be prevented by adequate pain management and the use of a communication system, such as clear lucid letter-board in the event of near complete paralysis. Better understanding, prevention and treatment of these issues may have a positive impact on the quality of life for GBS survivors. Moreover, it is important for patients and their families to know that their psychosocial problems are also experienced by other patients after GBS.

Recurrence of GBS

Although GBS is thought to be a one-time disease, relapses and chronic recurrent forms can occur. Patients are often concerned about the risk of having additional episodes of GBS. In a study of 220 GBS patients, 15 were found to have a relapsing course, with one to 4 recurrent episodes. The interval between episodes ranged from 3 months to 25 years. Antecedent events such as a viral infection preceded most relapses, and patients presented each lime with the typical clinical and laboratory findings of acute GBS. All patients had long asymptomatic periods between the episodes. In a more recent study of 476 patients following GBS, 2.5% experienced a recurrence of the acute illness, with a mean period of 16 months between the episodes (range 2-47 months). One patient had three episodes. The authors found no relationship between the risk of having a recurrent episode and the severity of the first episode. Furthermore, the severity of the subsequent episode did not correlate with the intensity of the first episode. Reaching a correct diagnosis may be challenging in these cases. Even GBS experts may find it difficult to separate a "relapsing variant of GBS" from chronic inflammatory demyelinating polyneuropathy (CIDP), especially early in the course. Recurrent episodes of true GBS, although rare, may occur following similar preceding illnesses, and should be treated in the same way as the initial episode. They respond well to the same established treatment modalities.

Delayed progression

Weakness from GBS reaches its maximum during the first two or three weeks of the disease. This is the active or acute phase of the illness. After a plateau period of days or weeks, recovery begins, lasting between weeks and two years. During this time strength improves steadily. Strength and sensory function plateau after about two years. However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient's notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS. The same phenomenon has been observed after poliomyelitis ("post-polio syndrome") and other forms of acute nerve injury. The incidence of slowly progressive late weakness in GBS is unknown, but it is rare. When it does occur, the patient's physician must recognize that the new weakness of seemingly recovered muscles does not necessarily indicate a second attack of GBS.

For many patients recovering from GBS, residual motor or sensory deficits may be only one aspect of the long consequences of the disease. Other issues described here may have a considerable impact on their quality of life. Effective treatments are available for most of these problems.

References available on request.

Contact Dr. Kleopa at: kleopa@mail.med upenn.edu 

(Reprinted with permission form the GBS/CIDP Foundation International).

REMINDER

ITS OUR CONFERENCE AND ITS ALL ABOUT US, THE SUFFERERS, FAMILIES AND CAREGIVERS.

LETS MAKE IT THE BIGGEST AND THE BEST YET………

WHERE: Brentwood Hotel, Wellington
WHEN: 27, 28, 29 APRIL 2007

For more information contact Bob Stothart on 04-3850-240 or e-mail: stothart@ihug.co.nz

Just in case you’ve lost your registration form, here’s another one for you. Hope to see you there.