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Issue 2004/2 ISSN 1174-6181 June, 2004 Newsletter of the Motor Neurone Disease Association of NZ Inc

My name is Sue Leader and I am happy to make your acquaintance! I started my new role on Monday May 10 and a week later I am beginning to feel that I have some idea of what the MND Assn of NZ is all about. I am very impressed with the work done by members of this Association to bring us to the stage of maturity we have reached today. I‟ve been asked to tell you a bit about my background. My last full-time role was that of Executive Director of InternetNZ, the manager of the New Zealand domain name space ( My role was to manage the transition from a purely voluntary society to one with a small core of highly competent paid staff. In the process InternetNZ became involved in international issues which will affect the way all of us are able to utilise this increasingly important medium, and I had the privilege of representing New Zealand at many international working meetings. Since then I have returned to my own business and have undertaken a series of fascinating projects for such organisations as Samaritans NZ. I‟ve also been on the „other side of the fence‟, having served as Vice President of the New Zealand Federation of Business and Professional Women Inc and I am the immediate past President of UniForum NZ. My current interests include being a committee member of the Hutt Valley Orchid Circle, and training twice weekly with sword and staff as a member of the Wellington Medieval Guild! When I saw the advertisement for this position I thought “that‟s the job I have been waiting for”, so I am very pleased to have been entrusted with this position. My business card calls me a „catalyst‟ – this is because I believe that we must see change as an opportunity rather than an obstacle. This can be very difficult when the change is imposed from outside, for example by the changed funding environment we now operate within. If we can treat change as a „pending solution‟ rather than as a „problem‟, we have the opportunity to find solutions which provide the greatest possible benefit. I look forward to working with you.

Saturday 24 July 2003 10.00 am - noon The Mercy Centre Conference Room, St Mary's Convent, 15 Guildford Terrace (entrance off Hill Street), Thorndon, WELLINGTON (Parking is available at the Mercy Centre) 11.15 am Guest speaker - Sue Leader, National Executive Officer, MND Assn of NZ. Topic: “Remaining people-focused whilst meeting external demands for increased professionalism – the impact of the Charities Bill 2004, Ministry contracts, et al” A light lunch will be provided ($10 charge). For catering purposes, please advise National Office email or phone (04) 473 5555. Do join us.

Professor Garth Nicholson is Professor of Neurogenetics at the University of Sydney Department of Medicine. He and his team at the Molecular Medicine Laboratory at the ANZAC Research Institute at Concorde Hospital in Sydney are carrying out research to locate genes causing MND and to study how known genetic mutations cause MND.

Only 5-10% of all cases of MND are familial (i.e. running in families). However, Professor Nicholson hopes that increased understanding of genetic factors will assist in understanding the causes of sporadic MND (i.e. not running in families), and possibly lead to the development of strategies for the prevention and treatment of MND in the future. Professor Nicholson has visited New Zealand twice recently. We were delighted to be able to arrange meetings to give members and health professionals the opportunity to hear about his research, and its possible implications. Professor Nicholson spoke to appreciative groups in Auckland in March and Christchurch in April. He was to have also spoken in Wellington in March. However, the windiest night of the year meant he had an attempted landing in Wellington that can best be described as „memorable‟, and his flight landed in Auckland instead! That meant a slightly flustered Team Leader MND Support and the Wellington Field Worker were the stand-in speakers! We really appreciated the understanding of the group who had come to hear Professor Nicholson, and their participation in a more general session about MND. Christine McKenna, Team Leader MND Support

NORTHLAND - A warm hello from all in Northland. Since our last report we have
had a support group meeting, where we were privileged to hear about Jill and Roly‟s trip to Wellington and the people that they met along the way. We are very proud of Jill. We are now looking forward to Awareness Day and are planning to have a stall in The Strand. It is always wonderful at support meetings as you get to see everyone and have afternoon tea together. We are still selling everyday cards at meetings.

AUCKLAND - Greetings and best wishes from Auckland. It has been a very busy
time for us all, these last few months. The sad bit was knowing that Kirsty was leaving at the end of March, but in her usual generous way she carried on until our new field worker was safely ensconced. Kirsty has had a long tenure with us, coming in 1996. It has been a very happy association and we have enjoyed her sense of humour, her loyalty, high ethics, her obvious good education and variety of interests. Not only the Branch and our patients, but many of the other health professionals that we associate with, have enjoyed this generosity of spirit as well. Now we welcome Linda Oliver who very quickly has become 'one of the team'. She and Kirsty have worked to make the transition period as pleasant as possible for our folk. We have been grateful also to Jean Young who has been visiting our people in the South Auckland area in the interim. She proved a very popular 'visitor'. We are to have a special Support Sunday on 13th June at 2.00 at the Ponsonby Community Centre in Ponsonby Terrace. This will be our annual meeting, our farewell to Kirsty, and our welcome to Linda. Special afternoon tea and the usual fellowship. Nessie Sweetman, Secretary WAIKATO - Hello to all from the Waikato Branch. We are enjoying a kind of late summer with warm days and only occasional rain showers. Our branch has had another quiet period with one fund raising activity - an Easter raffle. We have planned a social meeting in Paeroa on the 20th May to allow people in that area to meet the Waikato support group. We have hired a van that is wheel chair friendly and we are making use of a café in Paeroa for the get together. In March we invited Ms. Pat Simpson „Neurology Nurse Educator‟ to talk to our group. Pat gave a great insight into how the DHB can help people such as those with MND. There was a good two-way exchange of information, and all present considered the visit very enlightening and well worthwhile. Meynell

BAY OF PLENTY - Our bi-monthly support meetings continue to be a great
success. Last month we had the local Disability Information Service Centre (DISC) to talk to us about their work and ways they can assist people with MND in this area. Our next meeting will include our AGM on 20 June. Our branch library has benefited from a grant from W Bay of Plenty Support Trust.

Our most exciting happening has been planning for and employing our own Fieldworker. We have worked closely with National Office on this and are especially grateful for Christine‟s extensive input. It has been a very busy year for BoP branch and with Awareness Day coming up doesn‟t look like slowing down. We look forward to catching up with everyone at the AGM. Hello from TARANAKI. March was full of happenings. A phone call saying “We wish to give you money” was a great way to start. A big „thank you‟ to Lodge United Taranaki who chose us as one of four charities to receive $1000. That was followed by a visit from Christine McKenna - our support group turned out in full to welcome her. As it eventuated it was the last time we would have Bruce Allen with us - he passed away on the 14th April. Bruce and Laura attended the first support group meeting held in May 1993. Bruce had already been diagnosed 11 years at this stage. They always said it was wonderful to find the support and friendship of like-minded MNDers. We will all miss Bruce and his phone calls. We extend our love and continued support to Laura and family. Barbara WELLINGTON held its AGM on Saturday 15th May. There was an extremely disappointing attendance and to make matters worse only one person stood for committee. John Houghton stood down as President after being involved, in some way with the association since 1996. Wendy Smith was elected as President. Wendy has previously worked with the Red Cross in South East Asia. She became involved with the branch during the year after a friend had been diagnosed with MND. John thanked the outgoing committee for their hard work and dedicated effort during the past 12 months. Our fieldworker Louise had a successful recent trip to Nelson and Blenheim. I believe that the trip was a first for a Wellington Branch fieldworker. It was also pleasing to note that the Community Organisation Grants Scheme in Palmerston North has approved mileage funding for Reima Casey. Reima is providing invaluable support for MND patients in the Manawatu. John Houghton CANTERBURY - The Canterbury Branch continues to thrive. 36 people attended our AGM, many attracted by our guest speaker Prof Garth Nicholson, neuro-genetisist from Sydney where he is carrying out major research into causes of MND. He is studying the DNA of families with the familial form of MND and expects that by collecting enough samples (he took samples while here) he will be able to pinpoint the genetic processes involved and from there look at effective treatments within five years. We have a new President, Trish Morrow. She was elected to follow Shirley who chose to stand down after three years in the role. We have a committee of nine keen people. Our secretary Pam managed to avoid the AGM by giving birth the night before. We hope it wasn‟t the stresses of office that brought Ashley into the world a month early! DUNEDIN SUPPORT GROUP - We have had a busy month with new MND members (sadly) and with the death of our very dear friend Kevin Kelliher on 10th May. Our thoughts have been very much with Jan and her family.

We gave an awareness talk to the Lions and have had a very good response. They found the talk informative and have all taken packs of our Everyday cards to sell to friends and relatives. Church groups have also been pro-active in selling cards (43 packs). The St Peter Chanel Catholic Church in Green Island has set up a fund to help people in their church who have Motor Neurone Disease as there have been several in recent times. All is going smoothly in the south - in spite of impending winter weather. Our next meeting will be Sunday 13th June at 2 pm.

GLOBAL AWARENESS DAY IS 21 JUNE This is a day when we have the opportunity to make the public more aware of what MND is and what the MND Assn of NZ does.
The little socks marching through this Newsletter are to point you to a fundraising effort these cute socks have taken the international MND world by storm! They come in “shorties‟ the style commonly worn by women golfers, and the „long-tops‟ by male tennis players. They have white tops and navy soles. They are 85% cotton, 10% nylon, 5% elastine. At $6 for the „shorties‟ and $7 for the „long-tops‟ they‟re good buying. A percentage of the price goes to help fund our activities. Our everyday Cards are also available. FOR SALE: Mobility Scooter - 3 wheeled Fisher & Paykel. Hardly used and in excellent condition. $1500 ono. Please call Jill on 04 970 3123 Mitsubishi Van with wheelchair lift. For details ring 06 8749460.

President Edith writes - A very cheery hello and a special welcome to new members of the association. I hope we can meet your needs - be sure we all do the very best we can given we are a small and largely voluntary association. I am aware that this is Branch AGM time, so thanks to all who have served on branch committees and welcome to new officers and committee members. May you all have a good year. I would also like to publicly thank National Council members for their efforts over the past year. I am looking forward to meeting any new delegates in July. Ahead of us is another big year. Among other things we must rewrite our Constitution to bring it up to date.

During Beth‟s three years as our Executive Officer the association has made great advances towards becoming a more effective organisation. Thank you Beth. And now a warm welcome to our new Executive Officer. I am pleased to be able to announce that we have appointed Sue Leader as our new National Executive Officer. Sue comes to us with a background in both the not-for-profit and the business sector. For the last eighteen months she returned to running her own company which specialised in assisting small-medium businesses and voluntary organisations. Sue has experience in the voluntary sector, having been national president of one voluntary organisation and national vice president of another. I'm confident that Sue's background brings with it the ability to quickly understand the range of perspectives and concerns of an organisation such as ours and I look forward to working with her as we move into the future. But Bethless at National Office. Sadly, April 16 did come round and, sadly, Beth did go. Off to pursue a new career in the Corridors of Power. As we acknowledge our huge debt to her for three years of dedicated hard work, we hope that the survival skills honed with MNDA will serve her well within the Beehive environment. Here is her last word to us -“Thursday 22 April, doing a last tidy-up in the office, I now take this opportunity to say goodbye to you all. I have met many special people in my time with the Association and I will take many special memories away with me. It has been a privilege to be part of such a caring and brave group of people. Kind regards to you all, Beth Watson.” JILL BRADDICK, QSM AT GOVERNMENT HOUSE. 2nd April was a special occasion for MNDers when Jill was invested with her QSM at Government House, Wellington by the Governor General Dame Sylvia Cartwright. Accompanied by husband Roly Griffiths, mother Molly Kelly, son Hamish Braddick, and President Edith McCarthy, the investiture was moving and dignified. On the way to Wellington Jill and Roly visited MNDers in the Bay of Plenty and Waikato – Jill never gives up and makes the most of every opportunity! They had a busy time in Wellington being interviewed for Good Morning New Zealand and radio and newspaper articles. If you would like to be in touch with Jill she can be contacted on Congratulations Jill, we are proud of you. Keep up the good work. Sue Leader writes - As I write, it is one day off the end of my fourth week as National Executive Officer for the MND Assn of NZ. This feels like the first time that I have paused for breath since starting my new role. I‟m pleased to discover that my head no longer feels like new information is overflowing out my ears, that my feet seem to have made some connection with the ground upon which the Association lives, and that my desk begins to look as though there is some order to it! As you may have gathered, it has been a full-on month. My first, and lasting, impression is that the MND Association - its members, supporters, National Council, Branch Committees, and Staff - is an amazing organisation. We are

clearly well served by the host of people who give freely of their time, energy, passion, or money to provide the services we do for people living with MND and their carers. It is very exciting, not to mention inspiring, to be asked to lead the operational arm of MND at this stage of its lifecycle. I‟d like to pay tribute to my predecessor Beth Watson, as it is clear that she has worked devotedly to assist the organisation to the stage of growth and maturity it has now reached. I am off next week on the first stage of my “Meet the Branches” tour, and I am looking forward to meeting with as many of you as possible. I hope you will share your thoughts and ideas concerning from whence we have come and whither we are going. the Office remained operational during the gap between Beth‟s departure and my arrival, and we owe Christine, Vera, and Corrina thanks for making this happen. Vice President Shirley Croll took on the role of getting this Newsletter together and I am grateful to her and Geraldine for saving me from having to pick that job up as soon as I arrived. Christine continues with the development work for the Field Workers‟ Team. I finally had a chance yesterday to look at the obligations we had undertaken in the contract with the Ministry of Health – they cover a huge amount of areas and I am impressed with how much Christine and the Fieldworkers have been able to accomplish in the few months since the contract began. Vera continues to provide excellent financial services for both National Office and for some of the Branches. I was pleased to note that Wellington Branch moved a vote of thanks to her at their AGM as she is one of those people who is not only competent and willing, but also really enjoyable to have around. I firmly believe it is National Office‟s role to make Branches‟ lives easier, especially given the increasingly precise „compliance‟ standards in the health field. Anywhere we may help, we are happy to do so. Over the next few months, I will be drafting sample policies to meet the increasingly complex legal and regulatory environment in which we work and will offer them to Branches to use or adapt to their local needs. Another of my key tasks in the relatively near future is that of drafting a Communications Plan. The National Council is keen to ensure that we raise our profile as an organisation, both to ensure that people with MND and their carers are aware of the support and services we can offer, but also with funders, health care and other providers. In order to ensure that we are effective in this I am reviewing all of our communications – internal and external – including the Newsletter, the website, and library and reference materials. As many of you will know Corrina is the first point of contact for inquiries for information, so I will be making use of her knowledge of what you most often want to know (and possibly can‟t find!) to ensure that our planning is effective. The last few weeks have been dominated by the impending Charities Bill 2004. This is a major piece of legislation that will have a huge impact on how we operate in the future. I attended the Wellington workshop on the bill, held a variety of consultations with colleagues in the health sector, and then drafted a submission on behalf of the

Association. National Council signed off on this today and I have just sent off 25 copies to the Social Services Select Committee. I have asked to make Oral Submission when the Select Committee sits. I will place the Submission on our website as soon as we have made our Oral Submission (Submissions remain private to the Select Committee once they are submitted). In the meantime, anyone who wants to know more about the Bill can check it out at Until next issue ….. Sue Leader

by our Medical Advisor Dr Andrew Chancellor MBChB, MD, FRACP Most patients reading this commentary will recall having undergone neurophysiological tests, usually at the time the diagnosis of MND was being considered. For others the memories of the electric shocks and sharp needles may have faded completely amidst life changing events. Why are these tests necessary? The electrophysiological investigation of nerve and muscle disease is divided into two components: nerve conduction tests (NCS) and electromyography (EMG). Firstly NCS involve applying a brief electrical current over peripheral nerves and recording the responses from electrodes over other nerves, or over a muscle. Secondly, the electrical activity of the muscle itself is examined by EMG. A recording electrode needle is inserted into the muscle to examine deep spontaneous muscle membrane activity (such as the fasciculations, which may be seen by the patient under the skin) and activity initiated by voluntary muscular effort. These tests are mildly uncomfortable. Unlike radiological techniques the core study methods have remained essentially unchanged for several decades. Combined, these data allow the neurophysiologist to extend the clinical examination and determine if there is evidence of lower motor neuron disease, and its extent. The tests answer the question: is MND more or less likely than disorders which primarily affect the nerve itself, the nerve-muscle junction or muscle? Unfortunately, as shared with other medical diagnostic problems, if the clinical diagnosis of MND is proving difficult, so the electrical tests may not be sufficiently conclusive to be sure about the diagnosis. When the diagnosis is clearly ALS, the neurologist may feel the tests are not necessary. From time to time doubt arises when an older person has nerve „injury‟ due to degenerative bony spinal and disc disease affecting both the spinal cord and the nerve roots as they leave the spinal cord. This problem, which may be suitable for surgical treatment, requires careful correlation of clinical, electro-physiological and radiological findings. Chronic limb wasting and weakness, sparing sensation, might also suggest the diagnosis of MND, but can be caused by genetically determined forms of lower motor

neuron disease, which are quite unlike typical ALS and also by primary muscle disease (dystrophy). There are many other mimics of motor neuron disease a neurologist has to consider, most are more easily differentiated from ALS, for example: the late effects of radiation therapy after breast cancer; spinal cysts; benign causes of muscle twitching; genetically determined spinal degenerations; tumours close to the base of the brain; one or more nerves trapped or compressed, for whatever reason; processes which primarily affect the nerve axon (the cable as it were, rather than the motor nerve cell bodies themselves) such as „multifocal motor neuropathy‟. Neuro-physiological tests are important in the evaluation of such possibilities. Remember that the term motor neuron disease encompasses a range of primary motor system disorders, and is less specific than the term amyotrophic lateral sclerosis. Discussions with your neurologist will help in understanding these nuances. A.M.Chancellor
The views expressed in this article are those of the author and not necessarily the MNDA, or other members of the NZ Neurological Association.

Motor Neurone disease is known as amytrophic lateral sclerosis (ALS) or Lou Gehrig‟s disease in some countries

SALIVA MANAGEMENT Spit….. and all that!
by Fiona Hewerdine, Speech Language Therapist Issues relating to saliva management can be a feature of motor neurone disease. These may occur at the onset of the disorder with co-occurring swallowing and speech problems or they may occur throughout the disease. There are very invasive management strategies for resolving saliva treatments including radiation treatment, Botox, surgery and chemotherapy. However, there are lots of alternatives that can possibly influence management and I would encourage using these as the first line approach. Saliva issues are threefold:1. Saliva secretions may be thick and tenacious and difficult to move. These may occur with a dry mouth. 2. There may be excess salvia known as sialorrhoea, or there may be a dry mouth experience known as xerostomia or aptyalism. 3. We need saliva to help us chew, taste, swallow, digest food, speak. It also protects our teeth and mouth from potentially harmful bacteria. Of particular importance for somebody with motor neurone disease is their reduced ability to cough and clear secretions so that any bacteria in the saliva that enters the

airway is a potential risk for infections. Their management of saliva is important for these reasons but also for a sense of appearance and self worth and its management is important for chest care and safety. In addressing issues relating to secretions you may require a multi-disciplinary approach to support you. Your physiotherapist may be important to get your positioning right. This may be a change of angle in your tip and tilt chair, it may be a position in bed at nighttime. It may be extra pillows under the bed, it may be bed raisers acquired by the occupational therapy services. Orthotics and physiotherapists also have a range of collars; the headmaster collar or Salt collars are available and more recently we have used a Philadelphia collar here in the Bay of Plenty in conjunction with secretion management and a tracheostomy. It may also require liaison with a dietitian. If you are peg fed it is important that you are having adequate fluid. Too little fluids, less than 6-8 cups a day, may cause dehydration and a reduction in saliva. Your speech therapist will also be a key person in assisting you with your secretions, and may support you with some of the guidelines that follow. Let’s look at the management of thick secretions. These may be most difficult to manage as they are difficult to spit out. If you are experiencing trouble with your tongue muscles it may be hard to move the secretions forward. This can cause distress, tiredness and discomfort. Cares and tips of things that might help you: it is important to try and keep your fluid level up, you need up to 2 litres of fluid a day. This might be orally or via the peg but it also might mean that you take fluids in a thickened form or in a solid form, for example, jelly. Minimising your intake of caffeinated drinks is important as caffeine, i.e., tea, coffee or cola are diuretics. This can increase your fluid loss and make you more dehydrated. The enzymes in juice or carbonated water, ideally sugar free, will help breakdown mucus. Papase, the enzyme found in pawpaw juice, pineapple and cranberry juice, is also useful, as is dark grape juice. Another way to allay the sensation of the thick secretions in your mouth is to use a toothbrush, gauze or swab. There are also green sage swabs and denta-tip sponges available. Remove the excess fluid and then brush or wipe around the gums, tongue and mouth. Sucking pawpaw tablets or applying pawpaw ointment may also be useful. Some people note that when they take dairy products their secretion of mucus increases and also seems more tenacious. Avoiding dairy products may help. Sometimes dairy products are hidden in blended products from the supermarket - so it is worth looking out for these. It would be worth trying soya products such as soya milk, cheese and yoghurt. There is a good range of nutritionally sound food which is important if you are experiencing potential nutrition issues because of dysphagia. In liaison with your physiotherapist it might be pertinent to look at borrowing a suction machine. Excessive use tends to stimulate saliva flow so this may or may not be helpful to you and use should be discussed with your professionals. Humidifiers are also a worthwhile way of loosening thick secretions. We have had a number of successful experiments with people who have sat in the shower or by a bowl of steaming hot water to reduce the secretions a very old fashioned but effective technique. Nebulised saline is another means of

humidification. (Nebulisers are most commonly used to administer drugs to the lungs for asthma). Let’s consider dry mouth issues or xerostomia. If there is inadequate saliva it may be painful and uncomfortable to eat, swallow or to speak. It may affect your oral or dental health. There are a number of sprays available. Dentical is a product recommended through the oncology radiation services in Auckland. It is useful post-radiotherapy and may also be relevant for you. There are also other products available through your general practitioner - orthosalv and artificial salivas prepared within your own hospital services. It is important to make sure that you are taking 6-8 glasses of fluid a day (noncarbonated drinks). Using skin protecting balms and barrier creams to lubricate and protect the surface of the mouth, tongue and lips is important. It is possible to use Vaseline, grape seed oil on its own, or grape seed oil mixed with flavourings like peppermint. KY jelly is also useful. These products can be put inside the mouth not just on the lips and are important to continue using to help manage symptoms. Chewing sugar free gum or pieces of pineapple can be important ways of stimulating saliva production, however, you will need to take care if you have a significant dysphagia problem. Sucking on ice cubes may be helpful, but it may not be a possibility for you if you are unable to tolerate oral intake. Consult your speech language therapist. Dry mouth can also be helped by the use of a humidifier or by vapor inhalation, i.e. placing bowls of water in the room or by using gas rather than electric heaters, or by keeping a window open. You may find that your secretions are better around about the time of meal preparation and it may be that the boiling of food before dinner has added adequate humidification to the atmosphere to relieve the dry mouth. Smoky environments and alcohol tend to dry the surface of the mouth and throat and should be kept to a minimum or avoided. There are some natural saliva substitutes; Biotin is a product that is available, not only in spray but also in toothpaste form. Some of the medications you can take may also reduce the amount of saliva that you produce so liaison with your doctor will be important to see if your dry mouth experience is happening as a consequence of this. Finally, lets review excessive saliva management known as sialorrhoea or ptyalism. This can impact on the person with motor neurone disease due to poor head or body positioning, inability to close the lips or to maintain the lips in a shut position, also difficulty with swallowing. It is important to note that your secretion flow is not increased. It is more a reflection of changes in ability to swallow the secretions that provides the sensation of flooding with excess fluids. Saliva may escape from the side of the mouth or it may slip down the back of the throat causing a tingling feeling or a cough. You need to liaise with your doctor and speech therapist to make sure that you are managing these wisely. Compensatory strategies include trying to swallow regularly and clear the saliva. Sometimes a little drink around the house may help you to swallow more successfully as the stimulation of a bolus to swallow may improve the swallow competence. It might be helpful to write yourself little notes around the house that say swallow or cough and swallow. Dabbing around the mouth may be helpful but wiping should be avoided as it stimulates more saliva flow - you are not wanting to massage the salivary glands, just a gentle dab. Clothing protectors are important. We have personally

designed backless shirts for the men and blouses for women that are very useful and the placement of a bib during a meal or in a car journey. These can be tucked under cardigans or shirts and to all intents and purposes look like the real item. On arriving at your destination or after a meal these are easy to pull forward and to remove. Clothing protection can also take the form of small scarves or napkins. If you are interested in having a contact that is able to make these specially lined toweling shirts please call Also a quick trip down to the Sally Army - a very useful source of shirts - chop out the arms and the back, put some tabs in place of the collar and hey presto! Portable suction and home use suction devices can be available for severe difficulties or for periods of the day but again, you need to be really careful not to over-use these. Positioning strategies are important - side-lying, sitting or standing can help reduce the saliva collecting in the back of the throat and the occasional use of a soft collar. However, it is really important that you liaise with your physiotherapist and your speech therapist as it may be that changing your position will compromise your airway. It is important to protect your airway, to be able to tuck your chin towards your chest as you swallow. So practising this manoeuvre with your own secretions is a good way of taking care of your airway. Medications are available from your doctor. We are using a variety of products here in the Bay of Plenty, Atropine, Hyoscine, Buscopan, Scopoderm and Amitriptyline are all medications that we have used, either in liquid form through the peg, in tablet form through the mouth or in patch form on your skin. It is important to discuss these with your doctor and to continue to revisit these as these drugs have side effects including dry mouth, constipation, blurred vision and reflux from the stomach. It is my experience that saliva control changes during the progression of this disease and it may be important that you tweak these as the disease changes. It may be useful to try one of these medications in conjunction with a more homeopathic or wellness based approach as well. We found that often the invasive approach is great to start off with but becomes inadequate. We use a bigger gun with something stronger and perhaps a drug and then that becomes inadequate but the combination of the two then is managed. As we have mentioned, in more severe cases redirection of the salivary ducts can be considered. Botox is a short term intervention which inhibits saliva flow very effectively but requires repetition, or radiotherapy. It is important when deciding what intervention strategy that you should use for your own secretion management, you liaise carefully with your multi-disciplinary team, the occupational therapists, the physio, the dietitian and, most importantly, your speech therapist and possibly ENT Nurse or ENT surgeon, neurologist and general practitioner. Unaddressed secretion management can severely impact on your quality of life and your quality of dying. It is really important that you address these issues and that you continue to address them throughout the disease‟s progression. In managing your secretions, you are helping your sense of wellness, you are protecting your airway, you are looking after your teeth, you are maximising the opportunity to swallow orally and to continue speaking. Also, vigilant oral hygiene accompanying the secretion manage-ment will make your mouth taste fresh and feel pleasant. It will keep your lips in good order and

your chest in good state. Oral hygiene cannot be understated in its importance with many diseases but particularly with motor neurone disease. Vigilance to make sure that your teeth are cleaned, and that if you are nil by mouth, that you may have a drier mouth than normal and need extra attention to the dry mucosa within your mouth and your tongue. It is also important to make sure that you don‟t have oral thrush. There are swabs, as mentioned, available on the market. Foam ones well secured on to a stick are better than the cotton buds. If you are using products like Listerine or proxamint this product has a bubbling effect and lifts the dirt from inside the mouth. The routine you ought to go through if you are using these products is putting the fluid into a separate pot and dip, squeeze, wipe, bin. It is really important that you follow this routine so you don‟t spread further germs around the mucosa. Vigilance in managing secretions is very important and is a very special gift that a carer can give her or his loved one. It is very personal to receive oral hygiene and to have your secretions addressed and it can make a huge impact on quality of life. There are toothbrushes that have suction adaptors attached to them. Again you can use my e-mail to contact me for access to these. This might be really important if you have positioning issues and secretion flow issues and dysphagia. As a carer it is really important to discuss with your loved one what you are going to do inside their mouth, where and when you are going to do it. Mouth care done well feels tender and nurturing and gives the sense of wellness. There are some references that might be useful for further reading: • Margaret Fulton has a handout that she produced on a recent presentation on motor neurone disease. This is available from the Motor Neurone Disease Association. • Oppenheimer E (ed.1997), the Netta Collection of Medical Illustrations Volume 3, Part 1 USA. • Nevatus Sullivan.P.A and Guillford A.M 1999 Swallowing Interventions in Oncology in London under singular publishing. • Dr MacLennan et al flip Chart for Health Professionals edited in 2002 • Practical Approach to Saliva Control by Hilary Johnson and Amanda Scott . A really unusual tip that has been given to us by one of our local members is the use of a Betty‟s cake wee transparent plastic pottle (see March Newsletter). He has declined Botox as this is fairly invasive but his Betty‟s pudding pottle device works a treat and allows him to continue doing his cross-stitch so I really think that good old Kiwi ingenuity comes to the fore in managing secretions. Finally I have separated out the symptoms for the purpose of simplicity of these articles but other other problems can occur or change during the day. It may be that at the beginning of the day, assessing saliva is an issue; it may be at night time that second secretions become a problem; and during the night dry mouth is an issue. It may be that multiplicity of interventions are required to fully address the secretion management issue. Please speak to your local speech therapist and ask them to liaise with the general practitioner, neurologist and possibly ENT surgeon if required. Finally, if airway compromise is very significant and secretion management options have expired, it may be that a tracheostomy or laryngectomy is suggested in consultation with your general practitioner‟s referral to a specialist ENT service. We have been carrying out palliative

laryngectomies in the Bay of Plenty now for a number of years and patients have described to us that this has been very successful for them in alleviating the sensation of drowning, flooding, choking, airway compromise and distress. It may or may not be that this is available within your area and it may not be your preferred route of choice. But it is also important to know about it as a possibility because you may want to discuss this with relevant professionals that could support you with this intervention strategy. Along with these comments comes information that patients who have had a laryngectomy have been patients who have been people who are no longer able to swallow or to speak so to lose their voice box has enhanced their quality of life and not detracted from it. The above information comes from a number of referral sources and from experience taught to me by my client group in the UK and here in New Zealand. “Courses for horses.” Consultation with your local specialist is vital, keep going back until you get it right. Be prepared to twiddle and tweek! All fine adjustments are worthwhile for safety, comfort, and self esteem. Comment from Dr Anne MacLennan: I strongly endorse Fiona‟s advice, but would comment that fluid intake should often be modified towards the end of life. As the body weakens, the stomach is less able to cope with normal fluid volumes, and in some people, „what doesn‟t go down, comes up‟. In other words, there may be problems with reflux and aspiration unless fluid volume is reduced. Constipation, and the drugs used to reduce secretions, aggravate the problem. Metoclopramide is a drug which helps the stomach to cope better and can be given via PEG or under the skin. Reducing calories does not reduce nutrition if the calories were going the wrong way in the first place, or using up more energy (calories) due to coughing caused by reflux. Obviously, oral hygiene is even more important when fluid intake is reduced.

A small team of field workers, most of whom are part time, and some of whom work on a voluntary basis, provides support and information to people with MND. This support might include:  providing information about MND and support in understanding what it might mean for the individual  helping people with MND and their families to identify what services they need and how to access them (the health system is not always easy to navigate!)  providing information and education to health professionals to enable them to be more effective in supporting people with MND  liaising with health professionals on behalf of people with MND. The field worker doesn't provide "hands-on" care or emergency services, but is there to assist and support you in dealing with issues, planning to have your current and future

needs met and "getting the systems working for you". The relationship that the field worker has with the people they work with is a confidential one. If you would like to make contact with a field worker, contact national office and we will let you know who is available to provide support in your area. While we do not have field workers "on the ground" in every region, we are slowly increasing this coverage, and in some areas, I am available to support people remotely, usually by phone or email contact. We are delighted that two new field workers have been appointed recently. Linda Oliver is one of the two field workers in Auckland, replacing Kirsty Gudex, who has left after seven years of great service, and Anne Martin will start in a newly created position in the Bay of Plenty at the end of May. We are working as a team to further develop the support we offer and to refine and improve its delivery. We would welcome feedback at any time - hearing what we are doing well and ideas for improvement helps us to keep improving what we do and lets us know if we are providing what you need. Later in the year we will send out a survey asking for specific feedback - I do hope you will assist us by returning the completed survey. The team has been active on your behalf over the last while. In the January - March period, field workers had 443 contacts with people with MND and/or their carers by telephone, email or a visit, contacted health professionals working with their MND clients 180 times, and gave 12 talks about MND to groups of health professionals. As well as working with individuals and their families to see that their needs are identified and met, we also look at the bigger picture. We were concerned about the closure of AbleTech and the effect that may have on people in the Central North Island who have communication difficulties. The recent announcement that applications to Enable New Zealand for funding for equipment, housing modifications, driver assessments and vehicle purchase or modifications have been put on hold until 1 July 2004 poses significant risk to people with MND and their carers. We have written to the appropriate agencies to indicate our specific concerns for people with MND, and to offer suggestions and request involvement in finding long term solutions to these issues. We will keep you posted on progress! In the meantime, we are assured by Enable New Zealand that where there is a safety issue and the need is urgent and essential, it will be met. If anybody encounters difficulty in this we would like to hear about it. If you are experiencing difficulty in other areas it is useful for us to know - you may not be the only person with this experience and it may be appropriate to discuss the issue at a national or policy level. Our experience is that there is generally goodwill and understanding of the particular issues facing people with MND and that it is frequently possible to work things through. By working together and sharing information we can hopefully work with policy makers, funders and providers of services to improve the

support people with MND receive now and in the future. The first step is for you as members to let us know what issues you are encountering. We look forward to hearing from you! Regards Christine McKenna, Team Leader MND Support Telephone 04 473 5555

“Music To Move The Stars” by Jane Hawking Pan Books 2000 edition. Jane Hawking is Stephen Hawking‟s first wife of 21 years and mother of his three children. Stephen Hawking, now in his early 60s, has had MND for over 40 years. He still holds the Chair of astrophysics at Cambridge University and his intellect is considered to be up there with Isaac Newton and Albert Einstein. He lost his speech more than 10 years ago and has assisted breathing and almost no movement but is still presenting papers all over the world and still writing books on cosmology. His book “A Brief History of Time” was top of the best seller list in the UK for 54 weeks. For someone who is totally dependant he is still making a huge contribution to our understanding of the universe. I was glued to the book which is more than 600 pages long. Some serious editing would have improved the book as Jane is very repetitive of her difficult life married to someone with such huge disabilities. While I acknowledge that she didn‟t get nearly enough help when the children were small she did marry Stephen when they were both in their early 20s and after diagnosis, long after he could no longer tie his shoelaces. I was also astounded at how many very personal details she included about problems their eldest son had as a child and Stephen‟s family are harshly criticised. I am sure Stephen was difficult to live with. He refused to discuss his physical problems just as I know young men would. The fascination with the book is just how much this highly intelligent, or more accurately “genius” has achieved and how he has refused to let MND stop him travel the world to conferences and meetings and continue to publish his research. He‟s a good role model. Available in the library at National Office. Reviewed by Shirley Reid

My name is Leonie Sullivan. Two years ago I began to lose control of my lower right leg and honestly thought that perhaps I had suffered a slight stroke. I found it difficult to walk and got very tired just walking short distances. After many visits to my GP, referrals to specialists and a week in hospital having tests I was diagnosed with MND in September 2003. For a person 52 years of age this came as quite a shock. I thought that only the very old got complaints like this - unfortunately this is not so, as we are all becoming aware MND can hit any person and at any age.

My working career has always been in the professional arena, spending 9 years working as a National Supply Line Manager for an international computer software company, and also as Practice Manager for a legal firm. The last 4 years I worked with the elderly in rest homes/hospitals, and also providing personal care for those still managing to live in their homes. I thoroughly enjoyed these last 4 years working with the elderly and knowing that each day, at the end of my shift, I had brought some laughter and happiness to those for whom I was caring. To be now at the point where I can no longer work and have to depend on others for my day to day requirements comes as a shock and something I am having trouble coming to terms with. Fortunately I have a very caring support person/live in carer who has recently offered me an all paid trip to the US to visit my sister whom I have not seen for a number of years. My support person is also paying for Barbara to join me on this trip. Barbara is a person who has become very close and dear to me. We met at a function which both of our partners were attending and since then we have become inseparable. Friday is one of her two days off work and she devotes the time solely to me. We usually head off about 10.30 am to the shopping malls, casino, or wherever and spend the entire day doing what I want - the whole time being pushed along in my wheelchair by this remarkable person. Arranging the trip to the US has been exciting, as apart from visiting and staying with my sister in Orland (a 3 hour drive from San Francisco), we will also be visiting Las Vegas (staying at the Circus Circus Hotel), San Diego visiting Sea World and the Wild Life Park, then by coach to Los Angeles staying 4 nights at the Raddison Hotel Buena Park, on the doorstep of Disneyland and Knott‟s Berry Farm. Arranging hotel accommodation, and travel around the various areas taking into account using a wheelchair has been quite a task. Our travel agent has gone to great lengths to ensure that our plans are hassle free and allow good rest periods. We will have a night time helicopter flight over Las Vegas as well as the Medieval Dinner at Knott‟s Berry Farm and I guess there could well be other surprises in store. We depart on May 27, returning on June 26. Never in my wildest dreams had I ever imagined that I would be making a trip of this magnitude, let alone now having to do it being wheelchair bound! For those of you out there who have also been diagnosed with this severe disease, all I can say is “remain positive, strive for the stars and live each and every day to the fullest”. Put everyone else‟s problems out of your mind and concentrate on yourself. We all know that life is short and not one of us knows what awaits us around the corner - so make the most of each day. Keep smiling and try to make each day a joyous one. I would be very keen to correspond with other members who have access to email and would like to contact me (

LIVING WITH MND by Caroline Dare Jaime Dare and her sisters from Ireland have allowed us to print this article written by their mother who lived with MND for 2 years. They loved this piece for its positive approach and said that it helped them to come to terms with the disease. We thank them for sharing this with us.
Movement is the first freedom. It is our first identity. I am here, I am alive, we say, exploring the lush walls of the womb with our new fingers. Blinded by darkness we swim into being. Even before we breathe we move. Then the instinct energy overtakes us, births us, breathes us, crawls us, walks us, runs and the whole helter-skelter of movement that teaches us what bodies can do. Soon we become dancers. Everywhere, in all times, people dance. We dance in every language. Joy, sorrow, hope, fear, attraction, we dance all this and we dance for the dance itself. For what happens to our spirit when we move our bodies. These days I watch my friends dancing with amazement. One is a cat on hind legs, face up to the moon, playing with the air; another uses her body to dig space, making deep shapes with her limbs; another floats and sways in contentment, contained in the music like water in a pool; others are fiery and flash with electric energy or burn slow holes in the floor as they move. I watch all this in wonder, seeing dancing for the first time. A movement from inside willing our bodies to express itself. There was always a part of me that copied the dance. I can see myself furtively borrowing gesture and grace, wanting to make them my own. I remember asking myself, will I be 50 and still copying the dance or will I find my own authentic self and move as me? Now that question has even more resonance. I have to learn to move again in a new, softer way. The movement I have left is certainly mine alone, no one around moves quite like me. Clumsy, shaking and unbalanced, my dance is changing. I have heard of people with Motor Neurone Disease whose dance is reduced to the blink of an eye. That could be me. That could be where I am going. If I think of it as a progression towards stillness rather than paralysis it‟s an easier image to hold in my mind. Paralysis brings fear beaming out of my eyes like headlamps while stillness allows me to rest in spaciousness. I have only recently thought of speech as a kind of movement. Language is the second great freedom. Now that my voice is leaving me, talking seems a magic art, but I will still have language even if I cannot talk. I have always loved words, and they will never leave me, I will never be wordless even if speechless. Breath and sound are movements. The throat is a vagina giving birth to voice. Speech is muscular. Our tongue shapes sounds into words, like pastry-cutters making forms out of formless. My tongue is shrinking, tires easily and can no longer cut, chop and arrange sound so easily or so recognizably. I watch people talking, conversations are hypnotic. Words flow and fly out of mouths as carelessly and unconsciously as breath. Speech happens. Rivers, waterfalls, tidal waves of words flood the space between people wherever they gather together. I marvel at the effortlessness of this exchange. For me talking is slow and full of effort, words are like

rosary beads, felt singly and noticed as they come one as a time. Making sounds that sound like words is real work. So the other space I am heading for is silence. These days I am quieter. But the words are always there, caged like birds, flapping my throat, struggling and hoping more than anything to regain the freedom of speech. In the early days of this disease I used to play a game with myself. If I could choose only one would I prefer movement or speech, walking or talking. My mind would change daily as I played one off against the other. The freedom of walking in the mountains versus conversations with my children. Now the game is up. I am facing the loss of both. As things stand, stillness and silence is where I‟m going. A place of contemplation and inwardness, and I am a beginner there. Up to now my skills have belonged to the outer world where I have travelled and adventured beyond my wildest imaginings. If I have one hope now it is that this journey I am on is taking me somewhere more vast, more mysterious and more awesome than anywhere I have yet known. Disclaimer: All care has been taken in preparation of this newsletter. Nevertheless, the Motor Neurone Disease Association of NZ Inc., disclaims any liability for its content. The information contained within is of a general nature and to be used as a guide. Where suggestions are made for treatments for MND, consultation with a doctor is advised.

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