Newsletter September 2006

President's Paragraph

When I presented myself to my GP (with GBS) he said after about ten minutes that he didn't have clue what was wrong with me but it must be neurological. He sent me to a neurologist the next day and he diagnosed Landry's Paralasis (an alternative name for GBS). I'm forever thankful that my GP didn't fob me off with a false diagnosis as we now know that early detection and diagnosis coupled with early intervention of treatment has a huge influence on eventual recovery from this perplexing and frightening medical condition.

When I hit the wall, or more correctly, fell down in a heap, computers were not common and information about GBS was limited to medical people not all of whom (GPs in particular) had ever had to diagnose it. I count myself as lucky with my GP. Nowadays, there is the computer for anyone to search for information. There is on-going international research and publication of results. There are strong support groups in America (the biggest in the world), Great Britain, Australia and many countries in Europe. There are international conferences for lay people and medical specialists and so on. All this adds up to increased understanding and increased availability of people who know what they're doing.

We can hold our heads high as our support network operates throughout New Zealand and we have access to international information. Hospital visiting, provision of helpful brochures for people in need are some of the services we offer. And we have our own really good conference for anyone who wants to gain further insight and to meet individuals and families who have had to cope with GBS and its variants. I urge yo to attend the conference if you can, I'm confident that you will benefit from the experience.

I'm going to Phoenix Arizona to attend the American conference where I'll be among 400 or so all seeking to gather greater knowledge to help us to help others who are coping with this condition. I'll be reporting at our conference so for all sorts of reasons make a date to be in Wellington next April.

Bob Stothart
President

Secretary’s Column

I’m writing this from the 6th Floor of the General Hospital in the wonderful city of Vancouver in British Columbia, Canada sitting alongside my Mum who had a stroke on the day of her 86th birthday a week or so ago. As she drifts in out of sleep we have the occasional chat – usually about things that happened years ago – and about which she has no recollection when she next wakes up 5 minutes later! There is little I can do to help her ( she has 1st class medical support) other than to be here to comfort her and calm her confusion so it’s a time for quiet reflection – something of a first for me!

I am conscious of the difference between this time with Mum –which might be likened a little to that UK TV comedy “Waiting for God” - and the stories of so many members of our group who, having come up against the brick wall of GBS, have quite literally willed themselves to get better. Sure we have all needed the expert help of the Consultants and Doctors, their front line troops in ICU and the follow up team of O T’s and Physio-terroists to get us back “up and running” but time and time again when you listen too or read members “encounters” you hear the words “ I was determined to get right” and in the majority of cases they succeeded. We may tremble, limp, have pins and needles in all those extremities and need aids to help us get around -but we DO!! – and usually with a renewed slant on life …...”to enjoy the day!!”

I guess that concept plays a large part in the enjoyment I get out of doing this job and being part of a great group of positive thinking people. I know that we don’t get to meet face to face that often (roll on the next conference!) but there is a bond of support throughout the group – long may it continue!.

And speaking of the Conference……………….

The applications are in for the bulk of the funding we need to be able to run the event next April so please everybody keep your fingers crossed that the Taranaki Savings Bank and the Lottery Grants Board look favourable on our applications. We shall of course be making other applications to other funds nearer the date for help but these guys are our main funding targets for Conference 07.

I attended a very useful seminar day in Nelson recently – designed to help charitable groups like ours to get themselves organised properly and make successful applications for operational grants from funding organisations.

One of the presentations was from the new Charities Commission and in the follow up “Q & A” session I suggested that in return for all this additional “red tape” would they be prepared to include a link to our new website in the registration details – imagine my surprise when I got an e mail from the “powers that be” in Wellington a couple of weeks later that they thought this would be a GOOD IDEA and would include this as an option once registration commenced! Unfortunately they could not offer such a positive solution to my second question which was for a “government position statement” on the need or otherwise for Trustee’s Liability Insurance for groups such as ours.

The website is up and running – a few of you have told me about “gliches” on the site and with any luck these have been resolved – BUT – I am a very new amateur at all this high tech stuff so if you have any thoughts or ideas as to how the site might be improved or made easier to read/understand PLEASE tell me.

AND FINALLY!!

Who would like to receive the Newsletter by e mail – that sounds pretty “high tech” doesn’t it! – but seriously this might be an option for some of our members – we need to make it a goodly percentage to make it worth doing SO,,,,,,,,,,,,,, if you would prefer to receive the Newsletter this way please e mail me at tonypearson@xtra.co.nz and let me know. I will establish just how many would like this and consult with my “new boss” our President Bob Stothart if it’s a runner or not.

I don’t know what the next few days or weeks may have in store for my Mum – a peaceful end or good recovery would be my preferred options! – but I do know that for the rest of us the order is to KEEP ON KEEPING ON.

Take care – I am looking forward to getting home to NZ!

Tony Pearson – Secretary

THIRD NATIONAL CONFERENCE ON GBS AND CIDP

This is our conference, our chance find out how others cope with GBS/CIDP, to meet kindred spirits, to gain new knowledge and fresh understanding.

April 2007
Friday 27 to Sunday 29

It will cost $80-00 per person but $50 -00 for the second person in the family: $30-00 for full time students

It will be held at Brentwood Hotel, Kilbirnie, Wellington
A great venue, close to the airport with good access and an understanding about people with disabilities. Our first two conferences have been held at this venue.

The programme will provide opportunities for you to ask your questions of leading medical people about GBS and CIDP.

You will also have plenty of opportunities to talk with other people about this unusual medical condition.

Speakers include:

Professor Gareth Parry, a New Zealander working in America. Gareth is a neurologist and a leading specialist in the diagnosis and treatment of GBS and CIDP.

Dr Forbes Bennett, an Intensive Care specialist with an acute understanding of the needs of GBS and CIDP patients. 40% of GBS people go through Intensive Care Units.

Valerie Simpson, a New Zealander who spent months in intensive care in Melbourne Hospital recently. Her message will have meaning for everyone at the conference.

Vandy Pollard from the Advocacy Network Services Trust who will speak on issues to do with patient advocacy.

And much much more.

Conference Dinner
At the conference in Wellington in 2005, those attending requested that we arrange a dinner for the Saturday night. This would be an optional charge. Accordingly, a dinner has been arranged at the very good (Wellington ) price of $37-00. This will be a magnificent buffet and a fitting social occasion , so start putting those new coins into the cookie jar to cover this added expense.

On Sunday we arrange for the Annual General Meeting and this is another chance for you to have your say in the running and planning of the nationwide support network.

Start saving now. You have to be there to learn, to meet others with similar experiences, to socialise, to share, to enjoy and to increase your understanding.

Questions to Bob Stothart, Phone 04 3850 240
Email: stothart@ihug.co.nz

Obituary

Sadly we have to report that we have lost one of our original members. Mr Tom Sharman of Taita passed away at his home on 30 June 2006. Tom suffered with relapsing CIDP, and was at both of our conferences. Our sympathy to all his family at this time. Donations from Tom’s funeral came to GBS Support Group.

A special thank you to the family for that much appreciated donation.

GBS and vibration machines this from Bob Gregory.

After GBS some 17 years or so ago, my recovery was slow, particularly with my lower legs. The pains, the prickles, the needles and pin effects continued day after day, year after year. Finally, after 10 years the pains and problems reduced in frequency and occasionally I felt really fine. Still, fatigue, stress, and too much exercise led to recurrent pains and issues, but generally, I came right at long last.

Feeling better, for the past couple of years I have gone to a gym for some exercise. Three or four times a week, the treadmill, bicycling machines, and weightlifting exercises gave me back some strength and vigour and built new muscles and I figure stronger neurological connections. That gym experience has helped me, and helped my troubled legs, immensely.

This past week something new was added though and it just might be of interest to others caught up in the recovery process from GBS. My gym manager walked over and said, "try this new machine we are demonstrating today." Well, I wondered, but soon enough found myself standing on a little elevated platform and putting my hands out to hold on to the "arms" of the machine. When he turned on the machine, it vibrated, and of course, I vibrated too. The frequency of vibrations could go faster and slower, and I could stand with my feet together or separated, creating entirely different physical effects.

The time was brief - only one or two minutes at different frequencies, but the manager and the makers of the machine claim that even brief times are equivalent to lots of regular exercises. Surprisingly to me, after the exercise my legs felt better than they had for a long time.

The Galileo is based on Soviet science designed to train and assist the cosmonauts maintain bone and muscle strength. The flyer I received states "when standing on the rapidly vibrating platform the legs are alternatively rapidly vertically displaced, in a manner comparable to walking . . . by varying the frequency a variety of different whole-body benefits can be achieved." The list of benefits is long, and the possible side effects are few. Some examples of the positive include muscle relaxation, balance control, a stand alone exercise program, increase in peripheral blood flow, and more.

The gym manager said that this particular model costs $12000 but other models could be available soon. I was particularly intrigued with his comment that one gym has set up 12 of these Galileos and no other equipment whatsoever. Imagine that?!

To me, this machine would have made a huge difference during earlier stages of recovery, and I would like to suggest that for some people at some points in recovery from GBS, that they check with their medical staff, physiotherapists, and anyone else involved to explore the possibilities.

The key web site is http://www.galileowholebodyvibration.com.au/ but it will be well worth googling whole body vibration to see what turns up.

Our Personal Encounter comes from Michael Pearce – Waiheke Is

FROM PARTIAL PARALYSIS TO WALKING IN ANTARCTICA 15 MONTHS LATER

This is a personal story because in a dialogue in February I idly mentioned to Jenny that we had just returned from Antarctica, and had shared the journey with another GBS survivor. At last year’s conference we met other GBS’rs who have done and are doing far more amazing things. So this story begins on a Friday in October 2004. I was in my workshop making puzzles for Montessori pre-schools as I am wont to do. Frances, my wife, was away in Tauranga. Suddenly my hands ceased to function properly and as I went on up to the house I found that my legs didn’t function properly either.

On Monday our GP diagnosed a neurological problem, probably serious, get to a neurologist pronto. Tuesday morning, we had an early cancellation! The neurologist was away but he had as locum a specialist on the staff of Auckland City Hospital. He examined and gave me a letter for immediate admission to the neurological ward. Lumbar puncture and electrical conductivity tests concluded the diagnosis. So for five days I received a drip for 6 hours a day then home with painkillers. Over the next months I learned to walk again using crutches. A wonderful physio, Suzie, set up a daily exercise routine with adjustable weights which Frances helped me with. Despite improvements in the limbs the hands were not good and upper body strength was poor. About June, Suzie recommended gym work.

We had been talking with friends who had recently returned from Antarctica, so we set the challenge, we would do that next January. Made the booking, paid the non-refundable deposit and joined the gym.

About four weeks before we were to leave we were at a barbecue and among the friends was Blair who had done a lot of sailing around the world. Something of an adventurer. Can I join you ? He was struck down with GBS in Samoa, some 35 years ago, and no one in Apia could diagnose the problem. Eventually he was repatriated to Auckland Hospital where he stayed for some months. He is a keen jazz pianist and while his legs were badly affected he could still play, it kept him sane. Blair still has a serious limp but gets about quite independently and is resourceful. Frances has a lot of travel industry experience, so when Blair said that he would like to come she got busy. Over the next few weeks cancellations opened up and Blair was part of our party which by now also included another friend.

Our route was by air 13 hours, Auckland to Buenos Aries, capital of Argentina. Then after 4 days there, by air 3,000 kms to Ushuaia in Tierra del Fuego, Patagonia. A few days later by ice rated Russian ship, the “Akademik Ioffe”, to the Antarctic Peninsula. So we had to pack clothes for temperatures in the high 30s as well as 2-8C. One day it got to 41 in B.A.

Ushuaia promotes itself as Fin del Mondo – Spanish for the end of the world. It is the most southern city at latitude 55S, although city could be an exaggeration with about 40,000 people. Ushuaia is the starting place for a lot of mountain climbing, water based adventure and now, eco-tourism which is lifting their economy from subsistence. It could be described as a mini Queenstown with snow capped mountains half a kilometre back from the town. It even snowed in Ushuaia on 10th January, mid summer !! Frances and Penny went up to explore on a ski lift.

Ushuaia is in the Beagle Channel, so we sailed southeast and out into the Drake Passage, past Cape Horn. A westerly force 10 gale slowed us down a bit and eventually filled our first destination, Marguerite Bay, with ice. This bay is the furthest south that Sir Peter Blake and “Seamaster” got to in 2001. For those with maps this is 6830’S and 69W, about 810 nautical miles (1,500 kms) south of Ushuaia and so at a latitude nearly 3,500 kms nearer the South Pole than Auckland. The ice forced us to go north back up into Crystal Sound on the Antarctic Circle. From there we travelled north around the coast, in and out among the many islands, eventually reaching Deception Island 8 days later. On the way we called in to many interesting places and several scientific bases. Most days we went ashore twice a day to walk around the different locations, climb hills with snow to get the views or to see the various penguin rookeries. Gentoo, Adelie and Chinstrap penguins were seen in considerable numbers. Sometimes we just spent 2 or 3 hours in our zodiacs cruising among the icebergs and seeing more and more extraordinary shapes. The beauty of the place is amazing because there are so many ice structures which have shapes and colours beyond imagining. I know that I am repeating myself, but that is what Antarctica compels. Our mainly Australian and Canadian expedition staff were just so well informed, specialists in many appropriate disciplines, and all very keen to ensure that we really enjoyed our time as well as being adequately safe. This all sounds very easy but really it was quite physically demanding with the ice, snow and rocks which we walked over and around in heavy coloured wet weather gear.

A few anecdotes from our journey :-

Crossing Drake Passage there were very many birds such as three species of albatross, also three species of petrel including the diminutive Wilson Storm petrel and some long finned pilot whales. Further south we saw more and different albatross, petrels and fulmars also now humpback whales were around. Continuing south we crossed the Antarctic circle at 6633.6’ around 5 p.m. so all gathered on the bow for champagne and orange juice to toast the crossing.

In Crystal Sound there was a combination of brash ice and pack ice and as we made our first zodiac exploration looking for crabeater seals and to see some bergs up close it became apparent that we had an unexpected adventure on our hands as the ice closed in around a number of the zodiacs isolating them from each other and from the ship. All the zodiac drivers carry radios. It was fascinating watching the ship manoeuvre among the ice to approach the zodiacs while the drivers sought out leads in the ice. We are talking very experienced people here.

At Vernadsky station, in the Argentine Islands, there were Ukrainian scientists who made us very welcome and talked about their work. They have been taking daily weather measurements and studying the movement of the magnetic South Pole, 365 days a year for the last ten years. Before they took over in 1996 this was the British base of Faraday, and the Ukrainians have continued the same science programme which has been running every day since 1947 ! Near by Vernadsky is Wordie Hut which Blair and I also explored. A remnant from before Faraday was built, this hut was established by Sir James Wordie who was quite a mentor to many later Antarctic explorers. Inside the hut there were all the day to day requirements, just as if the lads were out working for the day. Try Googling Sir James, you may be amazed.

Our next landing this day was a visit to Peterman Island, the home of gentoo and adelie penguins as well as Antarctic shags. There was no doubt as we approached that this was a big rookery, the pong.

Cruising around the following day among the amazing sculptured icebergs we came across crabeater seals loafing on floes in large numbers or just mooching about. We also came across a group of elephant seals. Later in the Lemaire Channel there were orca. The Lemaire is a much photographed dramatic area with high mountains falling right down to the sea. Unfortunately there was a low cloud ceiling so we didn’t get the full effect.

Port Charcot on Booth Island, so named after a French expedition wintered over in 1904, is a dramatic site where we found a juvenile emperor penguin living among adelie penguins. Also there were rookeries of gentoo and chinstrap penguins. The climb up the hill here was a challenge for Blair and I but the crew just quietly pointed out the best routes for us to follow. From this vantage point we could see for miles, a wonderful panorama of icebergs, mountains and wind tossed seas.

In Wilhemina Bay off the Danco Coast our afternoon zodiac ride turned into a humpback extravaganza.

North to Paradise Harbour and going ashore this time we are on the Antarctic Continent, previously our visits ashore had been to islands. Paradise Harbour lived up to its name, absolutely glorious. There is an old Argentinean base there and an Argentinean ship was anchored, with the crew ashore. Having checked out the base they were now into sliding down the slopes on sheets. That evening we had a barbecue on the deck in perfect weather. The crew had funny hats and everyone was in happy mood.

North west now for the South Shetlands and Deception Island.

As the ship arrived off Deception Island it was out of our bunks and topsides at 4:45 a.m. to see Neptune’s Bellows, the narrow entrance into the volcanic caldera. Like Lake Taupo, there are patches of hot water near the edge in Pendulum Cove. In this case the water is near boiling. Some doughty swimmers, including Frances and Penny took a very quick swim in the 1C water. We have the photos! In the era before the Antarctic Treaty, claims to territory were supported by dog sled scientific and survey expeditions. The British had single engine Otter aircraft based on Deception, in Whalers Bay, to fly supplies all over the Antarctic Peninsula. Bob, one of our passengers had been an RAF pilot there for 2 years in the early 1960’s and was making his first return visit. He escorted us around the remnants of the base, explaining the buildings and operations. Prior to the British, there was a Norwegian whaling station here, and huge tanks remain.

A little conversation overheard as we approached the South Shetland islands. An American with little geography remarked to a Scots woman who was born in the Shetlands, “you must be pleased to be visiting your old home again” !!

Our final landing was at Half Moon Island, where we went ashore and visited the Argentine research station at Camara. We were welcomed by the naval commander and shown around. Then walked back through a large rookery of chinstrap penguins, so named because of the black strap-like colouration around their chins and got near to a large Antarctic shag colony perched on a precarious bluff. On the way we came across Antarctic fur seals snoozing at the water’s edge.

One of the all encompassing impressions from Antarctica is the extraordinary amount of bird and animal life. Crabeater seals are the second most populous mammals on earth, after people ! Krill is the foundation of life in Antarctica. Indeed early explorers thought that the seals eat crabs because of their pink poo, hence the misnomer crabeater seals.

Now back out into the southern ocean and home to Ushuaia where we spent a few days before boarding a small Chilean ship, the Via Australis, for our next voyage, to go ashore at Cape Horn island, a steep climb up 135 steps in strong winds which Blair and I achieved albeit slowly and much to our satisfaction. Sailing on we visited many amazing glaciers in the western Beagle Channel, then north into the Magellan strait. To small Magellan island, only 87 hectares, where there were 300,000 magellanic penguins following a very successful breeding season. These penguins dig burrows for their young. The season had been almost too successful so the parents were arguing over real estate and quite aggressive. Not normal behaviour we were told. Then a few days in the town of Punta Arenas which had thrived on the wool trade and taking fees from ships passing through the straits of Magellan. Once the Panama canal opened in 1914 the town became impoverished. That has changed again with the recent discovery of huge reserves of methane gas plus earnings from tourism. The new Queen Mary 2, on her maiden voyage, was anchored in the port. There is even a new and obviously affluent suburb. We visited some very fine old buildings from the earlier “days of glory”.

The English language edition of the French film “March of the Penguins” was released in South America in January and we saw it twice, once on each ship. It is now released here and is very highly recommended. I will probably go again.

The story ends in May 2006, my hands are still somewhat distorted but I have recovered enough control and finesse to do the intricate work required to make the Montessori puzzles again and Blair is off to go canal boating in France shortly. Not bad for a pair of 70+ year olds.

Michael

Reminders:

Please mark your calendars now for our 2007 conference. We would love to see as many as possible of you there.

Badges: Our own GBS badges still available at just $5 each from Jenny.

Postcodes

We have all been given revised postcodes. Please fill in the form at the bottom of this page and send it back to Jenny so our mailing list is updated and accurate.

Thanks.

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