Newsletter June 2007

President’s Paragraphs

Greetings to you all.

It is now two months since the conference in Wellington but thoughts and ideas generated there ring around in my head everyday. It was a well attended occasion with something in the programme for everybody. I will never forget the emotional power of Val and Peter Simpson’s presentation. They spoke from the heart and gave us such a thoughtful message of loss, hope and recovery tinged with compassion and strength. Their determination to cope with GBS and to get well, while telling their doctors exactly how they felt, was a model of patient feedback and tenacity. They were a wonderful presence over the two days of the conference. For me, another stunning presentation was given by Aaron Herangi and Jonathan Robin. They bravely spoke about the loss of career prospects and the ongoing impact GBS has had on their financial situation. Their candour brought tears to the eyes of many in the audience. In the flurry of coming to terms with and coping with this perplexing malady that is GBS/CIDP, the economic impact on individuals and families must not be overlooked. The medical input of Professor Gareth Parry and Dr Forbes Bennett was focussed, authoritative and as up to date as you would find at any conference in the world. We are fortunate to have people of this quality willing to give of their time and knowledge for our enlightenment.

The other aspect of the two days which was particularly pleasing was the involvement of members in many of the tasks associated with the running of a successful conference. Chores and jobs were spread around and all contributed to an informative and satisfying event. Many people are working hard to make the ‘lot’ of the GBS/CIDP person (patient and family) easier to bear. We are investigating holding the next conference, in 2009, in Auckland and already we have some innovative ideas for programme content. This one attracted one conference attender to come from Holland. Lets hope that the next time, we can present a programme that invites many more people, local and international, to attend as I firmly believe that this is one of the best ways we have of coming to an understanding this strange medical condition.

Best wishes for an enjoyable winter.

Bob Stothart
President

I have been asked quite a few times ‘What has happened to Terry’s Garden Tips in the newsletter’, so I have approached Terry and asked him if he would resume his garden column again…….thanks Terry.

Terry's Garden Tips

I'm Back ! Its nice to know some of you have missed me or at least you have missed my garden tips.

Winter is a cut back and preparation time in the garden. Cut back your roses any time from now on, spray both roses and deciduous fruit trees with Lime Sulphur if they have Lichen on the stems or branches. You still have time to plant a 'Green Crop' in your vege patch to dig in in the spring otherwise keep putting in cabbage, cauli, broccolii, silverbeet and lettuce. Through the winter only plant the picking type lettuce as the hearting variety holds the water when it rains then the frost blows them apart or they rot.

Pansys, Poppies, Primulas, Polyanthus, are the main seedlings for the flower beds through the winter. They all love a little Dried Blood as you plant or as a side dressing to give them a boost.

Until next time

Terry.

Valerie and Peter Simpson’s inspiring speeches –

Those of you who attended our very first conference in 2003 will remember Steve Chadwick in her opening address telling us about her sister Valerie. Valerie had then been ill and hospitalized for some ten months in Melbourne, Australia.

Well, it was such a dream come true to see her ‘walk’ into the conference this April with just her trusty walker, having endured many many months and years getting to this point.

Her husband Peter gave his address about being husband and carer to Valerie during all those long months in hospital, and the Valerie herself got up and spoke, brilliantly and inspiringly about her whole ordeal with what was initially thought to be GBS but was soon re-diagnosed as CIDP. Valerie and Peter have given us their speeches and you are welcome to a copy – send a sae to Jenny and we will get a copy to you.

Fantastic to see Valerie and Peter here, and a huge bonus to see Valerie looking so good…that was more than we could have dreamed of when we first approached her some 18 months ago and asked if she would consider coming over for our next conference. Thank you both so much for coming.

Change of address:

After every newsletter mailing we have quite a number of newsletters returned with ‘gone, no forwarding address’….or ‘moved’……or ‘no longer living here’. Please keep us in mind when you are shifting and let us know! Thanks.

 

For those joining our group a little later on, and maybe don’t know, it was Dulcie’s GBS encounter that led to the forming of this support group back in 1997. For those who don’t remember Dulcie’s story, I have printed it again and she has added a footnote –

DULCIES ENCOUNTER WITH GUILLAIN BARRE SYNDROME and a footnote TEN YEARS ON -

It's January 1997 - a Friday, and one thumb is driving Dulcie nuts - it has pins and needles and feels a bit 'strange'. Saturday her feet are semi-numb and heavy and by Sunday her feet were not co-operating and just would not do what she wanted them to. To put one foot in front of the other is an automatic exercise for most of us but when you stand there wanting to move but your feet feel cemented to the floor, it is weird, strange and somewhat scarey. With the help of her husband Ronnie, the long process of getting from the house to the car began - she was going to seek medical advice.

She was examined and admitted to Taranaki Base Hospital. Doctors were not sure what the problem was at this stage and she spent the next two days in the Ward - bedridden and becoming weaker by the minute. By Tuesday her speech was impaired and stroke was considered but soon ruled out. Later on Tuesday her breathing became compromised and she was admitted to ICU. By this stage one of the medical staff had considered Guillain Barre Syndrome and did a lumbar puncture to test for elevated protein levels in the spinal fluid. The results came back late on the Tuesday night with the confirmation that Dulcie did, indeed, have Guillain Barre Syndrome. At last - a diagnosis, but what on earth was Guillain Barre Syndrome??

Over the next few days she lapsed into complete and total paralysis and required full life support. She was air-lifted to Waikato Intensive Care Unit where she would stay for about six weeks. By the end of about the fourth week she had the ventilator removed and a tracheotomy was put in. Slowly - very slowly - Dulcie began to recover. Just the wriggle of one finger, or the slight movement of her foot was the first flicker of hope she had seen for many weeks. While in Waikato Hospital she was in the care of Mr Singh who advised Dulcie, after doing nerve conduction tests, that Dulcie's feet were very seriously affected and he did not expect a full recovery in her feet, and explained that she would be left with permanent residual damage there. He was right.

Dulcie was air-lifted back to Taranaki Base Hospital about mid-March where the long period of physiotherapy began. The physio, while very necessary and very beneficial, is a very long hard road with what seems very little results at first. The finger splints, leg splints, tilt tables, and hours in the physio rooms between parallel bars and exercycles looks cruel at the time, but when you see where it has got Dulcie long term you realise every minute was well spent. Dulcie, like any other person seriously affected with GBS, had to re-learn to hold basic utensils (spoon, cup etc), how to brush her teeth, get her balance and stand again and progressively to walk. shower, dress herself. It seems so basic but when this is taken away from you the re-learning is so difficult.

By the end of June, with the help of some fantastic physios and the care of her doctor, Dulcie was ready for discharge from hospital. She was by no means independent even at this stage and needed a walker, shower stool, and other household aids to allow her home. Her home was modified to allow easier access - steps altered - hand rails etc. The road to independence had begun. Dulcie still attended physio as an outpatient for some time after release from hospital. One by one her little helpers (aids loaned by the hospital) were returned and she could soon walk with two elbow crutches - then one elbow crutch - then just a walking stick and before the year was out she was leaving her walking stick home more often than taking it with her, and had learned to drive her car again.

Today, apart from nuisance value residual effects in her feet, she is leading a near to normal life. Outdoor bowls was her passion before GBS took its toll, and she has tried unsucessfully to return to bowls but has now conceded that this is just too hard. The standing, bending, hot days etc all combined to make it no longer a pleasurable experience so she has given that away.

Dulcie is taking music lessons and plays the keyboard, and knits, embroiders and is making a floor rug and is completely independent within her home. She and husband Ronnie have had one overseas trip and another is coming up shortly. From the depths of despair to a 95% recovery was a long hard road, and Dulcie would like to encourage all those with GBS to hang in there - suffer the physio, hard as it may seem at the time, and look forward to life after GBS.

And…….a decade later (2007) Dulcie has added a footnote:

January 26 1997 I was admitted to Base Hospital in New Plymouth. Couldn’t walk, talk, or swallow and was fast getting to the stage of not being able to move anything. Very scary for both me and my family. My breathing collapsed and I was put on life support. When GBS was diagnosed it was suggested to move me to Auckland or to Hamilton.

Having a son in Hamilton, that was where I went. I was flown up there by helicopter, sedated, so I was unable to enjoy the ride. I was kept sedated for a few days. As I slowly came round I was made aware I was in the ICU in Waikato Hospital. Days were just ‘one at a time’. Weeks went by and my family were great! Once they knew what GBS was, and that I would come right, it was a relief all round.

I was transferred back to Taranaki Base Hospital on March 10th? By this time I could talk, and slowly I could see that a long way ahead of me I would come right. As one of the Neurologists in Waikato hospital said to me ‘there is light at the end of the tunnel, and it is not another train!’

Somewhere along the way I had told the Dr I felt as if I had been hit by a train!

After five months I was allowed to go home with a walker and crutches. I was lucky to have a very supportive family and my husband cooked, ironed etc until I was able.

These days my feet and legs give me a hard time, quite regularly. I get tired, physically, and my body goes into ‘shut down’ mode. Everything just stops!

I feel I have got off quite well with after-problems. GBS is not something I would like to have to go through again. I have great admiration for the physios for their work and encouragement.

For those new sufferers I say….Have faith and patience.

My sister Jenny got the support group started when I got GBS. I feel she has done a great job. She & Ian have had their own ups and downs in the last year but are now coming right.

Bless you all.

Dulcie.

Obituary –

Miss Olive Nieper, Dunedin.

Mrs Morven Smith, Otautau died 19th May 07

Following our conference in Wellington…..

Lucy Wedgewood is an Occupational Therapist who attended our conference in Wellington and then went back to Rehab Plus in Auckland and held a meeting to pass on what she had learned at the conference. Thank you Lucy. John Davies attended that follow-on meeting and his report follows:

"There were 26 medical, nursing and physio staff, along with Dr.Pralene Maharaj, a current sufferer and her mother - a caregiver, Maurice Vickers, myself - both past 'victims' of GBS, and my wife Margaret - a caregiver, in attendance at a power-point presentation on aspects of the recent 3rd National GBS Conference held in Wellington at the end of April 2007.

Lucy Wedgewood, physiotherapist, delivered the presentation in a very capable manner, touching briefly on the aspects of GBS, CIDP, and other Neuropathies covered by the various speakers and specialists at the Conference.

In the time allowed, these topics ranged from acknowledging the expertise of the Presenters, in particular Proff. Gareth Parry - he had travelled from Minnesota in the United States, who delivered an address on "Getting up to date on GBS and related maladies," which included fatigue, campylobacter jejuni, and new treatment.

Dr.Forbes Bennett, an intensivist from Hawkes Bay spoke about "What actually happens in Intensive Care," illustrated with slides of both equipment used in ICU and patients undergoing care.

Lucy then went on to summarise the other topics covered in the Conference, ie. "Patient Advocacy" by Vandy Pollard; the "Impact on Career" by Aaron Herangi & Jonathan Robin; and the "Group Discussions" chaired by various GBS Board members.

The most telling part of the afternoon's presentation was Lucy's recounting of the personal encounter of GBS experienced by Val Simpsom from Melbourne, Australia, the sister of Steve Chadwick, Labour MP for Rotorua; of her 8 - 9 months symptoms before diagnosis of GBS then CIDP; 2 years in hospital with 11.5 months in ICU; and now her ongoing problems.

These accounts were interspersed throughout with comments from Pralene Maharaj who was able to explain her position both as a doctor and a current sufferer, being well qualified to comment on the medical, nursing, physio, and patient aspects, thus enabling her to understand the situation from 'both sides of the fence.'

To complete the session, I was asked to speak on the function of the GBS Support Group. I explained that we were not to be considered as one with the medical proffession; certainly not proffessing to have medical expertise; that we were not a government funded group; all our work was done on a voluntary basis; we tried to give positive encouragement and support wherever and whenever we could; and acted as a source of information in layman's terms, printing and providing pamphlets on GBS and it's various forms. But above all I explained that we couldn't help anyone if we weren't informed of their predicament."

John Davies, Trustee & Board Member.
11th June 2007.

Rachel deLima Brinkley is a social worker with CCDHB, and has advice on accessing services.

Inspired by Val Simpson’s talk at the conference and also by the comments of carers group I was part of I thought it may be helpful to write about how to access social work and social support services. So many people commented on the amount of physical and medical help available, but so little seemed to be known about the social and emotional support available.

One thing that was apparent was the disparity between services and areas, so keeping in mind that my knowledge is based on one particular geographical area I thought it may be more useful to talk about what support a social worker might be able to provide. Many of you may have learned this already, but hopefully it will be of some help to others.

So here goes…..

How to get in contact with a social worker……..

Given that GBS/ CIDP is hospital treated ask your ward if you can see the social worker or be referred to their social work department. Most hospital will have a social work department of some kind, and the larger ones will probably have social workers who specialise in and are attached to different areas (eg ICU, neurology or rehabilitation).

If you are at home ask your local hospital if they have a community social worker who could visit you at home, or some PHO’s now have social workers as part of their services.

Having a social worker who knows about the implications of health issues on your social situation is important, but keep in mind they may not know about GBS/CIDP and you may have to do some basic educating!! What is important is that they know how to access appropriate services.

Some people commented on the fact that some social workers only worked with elderly (this may be so in rehab units which can be top heavy with older patients, or smaller hospitals). Ask if there is someone who specialises in younger people or for them to find out who would be most appropriate to help you. From my perspective part of a social workers job is to find the appropriate information and resources for you even if it is not the main part of their job.

Val’s comments about self-advocacy are important here as often you will need to ask to see a social worker. Some wards may have social workers who see every patient who comes through the door, but chances are you will need to be referred and unless you show a highly obvious need for social / emotional help the ward staff may not think to refer unless you, a family member or a friend asks.

What can your social worker do for you……

There is no specific list of what a social worker will/ won’t do, but the following is what help may be available to you. Of course you can ask for whatever you want and the social worker will tell you if that is possible or not, or refer you on to someone else.

Part of your contact with a social worker will be what is referred to as a psycho-social assessment – that is the social worker finding out from you your current circumstances, supports, concerns, stresses.

  • Help at home with house work or personal care tasks. Access to these type of services vary dramatically across the country. Usually they are funded by the Ministry of Health via the DHB or local Needs Assessment Service Coordination Service (NASC). These supports would be provided through community health services (ie District Nursing service) or home care agencies contracted by the NASC. Eligibility may depend on whether you are considered to have short or long term support needs (usually the cut off is about 6 months). You may need your doctor to confirm this for the purposes of accessing help. If your services are provided through the NASC you would also be assessed for a Support Needs Assessment (SNA) to identify the level of help you need. The NASC and SNA can also be used to identify carer needs, respite care needs and the need for long term residential care.

If you are not in hospital but feel your needs have changed and you may need some support (or more support) at home, ask your GP or social worker to refer you to the local NASC for assessment. In some areas you can self refer.

Supports as a result of GBS are not funded through ACC (or I have never heard of it so far) as they are not the result of an accident.

You can also pay privately for supports (or extra supports) – look in the Yellow pages under nursing care for agencies.

  • Transport. Transport concessions are available around the country. Some of these may be a Parking Mobility card, taxi fare concessions/ vouchers, public transport concessions. Again some of these may have a time factor attached eg in Wellington to access taxi vouchers your disability needs to be of 6 months duration or longer. If you live in a rural area away from the main hospital, ask if there is assistance with travel or accommodation costs while you are at the hospital or travelling long distance to appointments.
  • Finances. If you are working and do not have any sick leave, or not enough you can apply for WINZ benefits – usually sickness or invalids benefits (this will depend on the expected duration of you illness and your ability to return to work in that time. Some hospital may have a WINZ Case Manager that visits the hospital on a regular basis, others you would need to visit the office yourself. In the case of the latter it is always worth asking WINZ if the Case Manager can come to you. Check out entitlements on the following website www.msd.govt.nz

Keep in mind that a benefit is usually never as much as you were earning, and is also affected by your partner’s income. You may need to do an overhaul of your budget and finances and you can ask your social worker for help or referral to a budgeting service.

If you are on a low income (even if working) you may also be entitles to family assistance through IRD. Check out their website www.ird.govt.nz or give them a call.

  • Legal stuff. If you have an Enduring Power of Attorney (EPOA), good on you. If you don’t go out and get one signed up now! (This is my little soap box issues!) This document allows someone to act on your behalf if you are not able to in regards to your Care and Welfare, or Property. Even if you have passed the stage of needing someone to do such things for you none of know what is around the corner! It doesn’t matter how young or old you are – wouldn’t you prefer to know that your matters are in the hands of someone you trust? In some cases when there is no EPOA applications will be made to the Family Courts to make decision on your behalf and this is an additional tress that your family and social worker do not need!!

Get information from your solicitor, Public Trust, Age concern, your local courts, www.eldernet.co.nz. It is worth the small fee for this peace of mind.

  • Counselling or emotional support. Sometimes it is helpful just to have someone to talk to, off load or just a shoulder to cry on. Your social worker may provide these services or can refer you to an appropriate counsellor depending on the type of support you need. This type of support should be for yourself or family members, and may range from a one off chat, assisting to adapt to life changes, or grief and loss counselling.
  • Accommodation. Your social worker can advise where you can apply for re-housing if this is needed, although this may just be initiating what can be a long process depending on where you live. If your current property needs adapting this would be something an occupational therapist would be involved in.

Your social worker may also be able to facilitate and family meeting for you with the medical team and ward staff if you feel that more information is needed or a coordinated discharge planning approach.

If you are concerned about being able to remember information (there can be a lot of it, ask for a summary of your session to be put on writing for you – then you can refer back to this as and when needed.

And finally if you have concerns about the social work service provided to you (and I hope you don’t), you can contact the following places with your concerns – the manager of the service provider, Health and Disability Commission (HDC), Aotearoa New Zealand Association of Social Workers (ANZASW), Social Work Registration Board.

Personal Encounter of Arthur Bott

My experience with G.B.S

I contacted Campylobactor from restaurant chicken, then 3 weeks later driving home I nearly side swiped a car when turning the corner and thought the power steering had gone in the car ..but it was in me!. That night I could not even tear the tab off a can of beer {that was real scary } The next day I had to have help from my wife to get up from a chair, so we saw our Doctor first thing as I knew something was seriously wrong .

He, to his credit, picked it was G.B.S. and got me straight into Hospital and heaps of Immunoglobulin . I lay in the bed unable to do or lift anything feeling terrified and the Doctors were saying I could wind up in a wheelchair.

When the nurses helped me to the Toilet I felt that if I could get hold of a walker with wheels I could move around so I argued and harassed the staff to let me try .

They finally agreed but said if I fell I would not be able to get up without help and that would be the end of it . I started just walking around the room , then down the corridors VERY slowly with the staff taking an interest in my progress . I must of walked many Miles the next few days forcing myself up every two hours . The Doctors were surprised at my progress and determination and even in my weakend state let me go home after 10 days ..

The recovery of my muscles has been slow and I have had to give up Golf but I can go fishing , play Snooker , look after our grandchildren , mow our lawns etc but when I hear of other people with G.B.S. I am so thankfull it was not more crippling ..

I think the Medical Profession should monitor patients that have had Campylobacter and other similar type diseases for at least a month for any sign of G.B.S.

Footnote: You could add to my story that I had no reaction to the hammers on my legs or arms so went through the shock and lumbar puncture treatments to confirm that I had G.B.S { NOT very nice } With the aid of the mechanical tilting bed to enable me to get up, getting motivated and mobile quickly saved my bacon I reckon .. One amusing episode was that I had to blow into a machine each day to check my breathing and chest muscels , as I worked with timber most of my working life I was quite strong for my build .. I soon learnt to blow heaps and hold my breath for a minute or so but 3 nurses tried one night and with much laughter NONE of them could do it .

{ One up to the patient }

Kind regards ,

Arthur ... 69 yrs young .

FUNDRAISER -

As a fundraiser GBSNZ now has its own cute little teddy bears complete with their own GBSNZ t-shirt. These are available from Jenny at $10.00. + p&p.

We also have our own fridge magnets at just $2 each, so be in quick as there are a limited number available.

WE NEED CIDP PERSONAL ENCOUNTERS.

If you are one of our CIDP patients or caregivers, and are willing to have your story told in our newsletter, then we would love to hear it!

ORTHO-BIONOMY

Meike Schmidt of Thames finds ortho-bionomy a concept that has helped her overcome her encounter with GBS. Our newsletter is full this time, but room permitting we will feature ortho-bionomy in our next newsletter. Meantime – if you would like to know more please phone Meike at 07-8673163 for further information.

In short….Ortho-Bionomy is a gentle, non-invasive form of body therapy which is highly effective in working with chronic stress, injuries and pains or problems associated with postural and structural imbalances. More next time.