Newsletter March 2009

President’s Paragraphs

As you read this, think about the conference,(the programme is included in this Newsletter), and make up your mind to attend if you possibly can. You will not regret it. You willmeet others who have cared for people with GBS/CIDP or who have this condition or are   recovering from it, or are part of a family that has had to respond to the devastating impact of this rare and strange malady. The sharing ofpersonal stories is excellent therapy.

There have been three previous conferences (they are held every two years) and the benefits to members are manifest in various ways. We assemble the best speakers, the most enthusiastic organisers and weave together a programme which has something for everyone. We think we’re doing something right as some of our members keep coming back to enjoy again the meeting of friends and the chance to meet new people who make up this incredible, diverse and interesting fraternity of GBS/CIDP patients and their families.

We’ll have the opportunity to congratulate Professor Gareth Parry, our keynote speaker, who was recognised in the New Year Honours list for his massive contribution to neurology. Gareth is a great communicator and his mission is to try to answer everyone’s questions before he leaves the conference. Another special feature of the conference is the panel of experts where our speakers ‘front up’ and take questions from the floor, so be prepared to have your queries and concerns addressed.

The conference is important for every person or family touched by GBS or CIDP. I hope to see you there.

Bob Stothart

Annual General Meeting

The 7th Annual General meeting of the Trust will be held in Auckland on Sunday 3rd May 2009 at the Airport Gateway Hotel, 206 Kirkbride Road, Mangere, Auckland commencing at 0930hrs.

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 and should be lodged with the Secretary as soon as possible but not later than Thursday 30th April. 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.

Gardening notes for newsletter

Autumn is now upon us and this is a great time, in fact the best time of the year to be planting shrubs and trees. The root growth that occurs now will aid the plant through next summer. Put some slow release fertilizer such as Magamp under your plants to give them a good start.

Autumn is also a good time to continue with your vege plantings. Over the next month or so try to replant as much of your vege patch as you can. The good growth through the autumn will allow you to harvest that little bit earlier and still have time to either replant with cauliflower, cabbage, broccoli e.t.c. or to put your garden to bed for the rest of the winter by planting lupins, mustard or oats. Any of these act as a green crop that is dug into the garden during early spring to put good nutrients back into the soil prior to spring planting.

Your local garden centre is generally the best place for advice and range of plants and garden products. Support them so they can support you.

Terry Watton
Paeroa Garden Centre

Secretary’s Section

Firstly an apology to all those of you who have so promptly renewed your membership of the group. I hope by the time you read this newsletter your renewal membership cards and receipts will have been sent or, at least, are close to being dispatched. A continuous succession of overseas visitors from mid December and the associated mandatory “ticky tours” of the South Island have seriously depleted my “office” time but this is about to end and I will get back into the saddle! – by the same token my report this time is necessarily brief.

Details of the coming AGM are given elsewhere in this newsletter. It is always gratifying to see so many of you at the meeting and being prepared to contribute ideas and suggestions about the best way to manage the group and keep it moving forward. I am still looking for a couple of reasonably fit members ex Wellington to assist Wayne Hansen at the airport so that he can get to the conference – if you can help give me a call. As an incentive the group will offer two free full conference registrations to anyone prepared to assist.

Do you have a favorite aid or gadget that helps overcome or diminish any residual legacies of GBS? – perhaps one that others in the group would like to know about? If so could you bring it to the Conference and we will set up a table to display the item. I’m NOT thinking of scooters or other large items but rather gadgets for improving grip – helping with tricky finger or foot movements and so on. Or, perhaps, you have mastered a special technique for dealing with a GBS related problem – if so a short note describing it could be really helpful to other members. In my case the residual hand tremble I have makes drinking a cup of Latte difficult sometimes – so now I always order a BOWL and hold it with two hands!! If you would like to participate in this idea drop me a line or e mail so that I have an idea of the likely level of interest.

Our Auckland “team” will be representing the group at the forthcoming Neurological Foundation Open Day at Auckland University’s Faculty of Health Grafton campus on Saturday March 21st marking the end of the International Brain Awareness week. They will be sporting our new display equipment and handing out information packages to interested parties.

Things have been relatively quiet in the Top of the South as far as new (known) GBS cases are concerned – just one recently – Jenny has supplied information pamphlets and Gareth’s book but offers to “meet and talk” have not been taken up -each to their own I guess. Certainly in the first week or so when CIDP hit me I would have dearly loved for someone to tell me things would get better but having gleaned a lot of information from the internet and then the UK group pamphlets I didn’t feel the need for that re-assurance so much as, by then, I knew what had afflicted me and how to deal with it.

Well I have run out of time and our present visitors need further “entertainment” so that will have to do me for this newsletter.

I am looking forward VERY MUCH to the Auckland Conference – to meet old friends, make new ones and learn a bit more about how the “experts” are getting on breaking the “code” of this strange syndrome. I do hope as many of you that can come along. I realize that in these tough economic times finding the funds for the registration fee can be tough but in terms of value for money and a bonus in “feel good factor” I don’t think there is better opportunity around.

Take care

Tony

How Cute is this little man!!!………featured in our last newsletter was Rob and Matt and Baxter….and baby due in April. Here he is - Isaac (Joe Luke) French arrived on Thursday March 12 at 6.30pm, just a couple of days earlier than the due date. He weighed in at 3.9kg, both mum and bub doing really well. Fantastic news guys……..congratulations from us all.

Isaac French.  

My GBS story-Ian Hankin, born 1962

I was attending a 2 day First Aid course in Wellington in April 2001 as part of work requirements and found myself volunteering at every available opportunity to act as patient. The truth of the matter was that I was feeling shattered and used any chance to lie down!

My fatigue was a sign that I was at the time unaware I was about to be stricken with GBS. Immediately after the 1st Aid course I started a 3 month contract as a relieving ranger on Matiu/Somes Is in Wellington Harbour for the Dept of Conservation.

I loaded my gear onto the East By West ferry and a friend who was helping me commented about a mark on my arm. I had been bitten the previous week by something on the farm we lived on in the Wairarapa and I said I’d get it checked out. A vein was quite pronounced on my left arm from the elbow to shoulder. On the island that evening I started to unpack my family’s gear. My partner and 2 year old son were due on the island later in the week. I quickly became aware I couldn’t open the flap on top of boxes, couldn’t turn door handles but more alarmingly couldn’t make a cuppa.

I was puzzled but not unduly concerned by this but I did tell my workmate that I might have to go and get it checked out the next morning. Things hadn’t changed at all so I got the ferry off the island and walked briskly to Eastbourne which was not a problem. I still could not open doors so had to use my head on the door of the doctor’s surgery to gain attention.

The doctor listened to my version of events and made a quick assessment that I could have GBS so he called an ambulance. I had heard of the condition before as a friend of mine in Christchurch had been seriously ill some 5/6 years earlier. It did seem odd travelling in an ambulance to Wellington Hospital as though I was feeling increasingly weak, I did feel fine in my head.

When I reached hospital and was required to undergo some basic physical tests, I realised things weren’t quite normal! I was put on Intragram plasma exchange and spent a week under observation and made good progress so that I was able to return to the island on light duties.

While realising that I was fortunate to only have a mild case of GBS, I remember being especially calm and accepting of my condition and I had a sort of faith that I just had to go with it all as my condition was totally out of my control. I do feel that for my case, this state of mind helped my recovery which the doctors said was a speedy one.

However, what I hadn’t counted on was the chronic fatigue I experienced back working on the farm 2-3 days per week. Most of my time on the island was welcoming visitors, taking school groups around, painting some windows so was not physically demanding. Scrubcutting ,spraying and yard work was leaving me totally devastated at the end of each day and I was usually speechless...beforehand this work did not have anything like the effect it was now having on me.

We left the farm in the spring of 2001 and I started a fuu-time job in a nursery in Canterbury and there I experienced the same fatigue at the end of each day. My situation didn’t seem to be improving so I sought help from the Canterbury Clinic of Natural Medicine where I was prescribed with what I can only describe as a series of potions and drenches. After a couple of months I started feeling considerably better, whether it was the treatment I don’t know but I was hardly interested in the hows, just relieved there had been a turnaround.

Six years later I am still working outdoors but at a reasonable pace if you like. I still feel fatigued at times, it has always seemed different from tiredness but whether this is a residual effect of GBS, ageing or the demands of young children or all of the above it’s too hard to decipher it all.

I have visited a couple of people in Christchurch hospitals as a support thing and while their cases were worse than mine, it may’ve helped that someone actually had some idea of a bit of what was going on for them.

Ian Hankin.  

Congratulations - Well Done

Earlier this year Dr Gareth Parry was awarded the Order of New Zealand Medal, for his services to neurology. From all of us here in New Zealand, our heartiest congratulations.

I will send you the Baker story Lil and you can add it here.

Briefly

  1. Accidently the wrong box number has been put on the subscription renewal notices. Please omit any other number shown, and send your renewals to –

    Mr Peter Scott,
    P.O.Box 4162,
    Palmerston North 4442
  2. Remember, if you live in Auckland and have room available to accommodate someone for the duration of the conference in May, please contact Tony Pearson. And, if you are in need of accommodation – again, contact Tony.
  3. In March we lost one of our longest suffering GBS patients. Betty Marsh died after a very long battle with GBS. She was 88. Our sympathy to her family.
  4. Diane Watton recently had a nasty accident having fallen in one of the glasshouses at their Paeroa Garden Centre. Our best wishes for a great recovery Diane.
  5. Those of you resident in Christchurch area would have seen a write-up in THEPRESS featuring one of our members, Katen O’Rielly. Kathleen was one of ourGBS patients and her garden was featured in the Gardening section, January 24th.Well done Kathleen.

Hospital Visitors

If you are attending the conference please make yourself available for a seminar at 3-30pm on the Saturday. Bob Stothart will chair a session to clarify the role of hospital visitors and for participants to share experiences.

Personal enc from - Pat Baker. & Ian Hankin?

We hope to see as many of you as possible at the conference………

1,2,3 May, Gateway Hotel, Auckland (near the airport).

Any questions……..contact Bob Stothart at: stothart@ihug.co.nz

Or phone him on 04-3850240

Bob has been working for months to put this conference together – lets make it worth every minute he has put into it.