Read our July - August 2017 MND News to find out about the latest news and research!
Download the PDF version of this newsletter: MND News: July-August 2017 (PDF 1.77MB)
The financial year is over and we are winding up our reporting and starting a new year afresh.
The year has been very busy as we move to the National Disability Support Scheme, develop and implement our new client management system, continue to raise significant funds to deliver services and support for people with MND, and ensure that MND is effectively represented in the changes to government policy and services.
We have had several staff changes during the year. Those who have left, we wish them well in their future endeavours. To those that have joined, we welcome you to MND Victoria and the fight against MND.
We have again participated in a quality audit, and have been successful in DHHS Recertification and the ISO 9001 Surveillance Audit. These are essential to be an approved service provider.
Client numbers remain high, and we have increased our hours of support to ensure that every person who needs and wants our support is able to get it. 215 people with MND in Victoria and Tasmania (19) have joined the Association, and 10,686 hours of support have been delivered. Unfortunately, we have been advised of 185 people who have been overwhelmed by MND and died. Our thoughts are of them and with their families and friends.
Of the 52 potential NDIS clients in Victoria, 11 are in the preplanning stage and 41 have funded plans of support. Of the 41, 38 have chosen MND Victoria as their service provider for either equipment or coordination of support. More areas will roll out this year and we look forward to continuing our support for those affected by MND.
In Victoria, our Equipment Service provided 1644 pieces over the last year, and recovered 1420 for refurbishment and reissue. Our Information and Resourcing Service responded to 966 requests, delivered 51 information/education sessions and distributed over 14,000 resource items.
Volunteers remain at the core of our organisation, and as at 30 June we had 133 active volunteers, having recruited a further 24 during the year. They delivered nearly 7000 unpaid but highly valuable hours of support and assistance to the Association, and we thank them all for their assistance and contribution.
Fundraising has been difficult, with significant competition and lower funds raised from our activities. One highlight has been our bequests, which have contributed over $855,000. Bequest funds are invested via the MND Care Foundation to provide income to support our care activities. Excluding bequests, we have raised $2.1 million to fund our work for people with MND. It is often not understood that the Association only received about 25% of its total income from government – the balance we have to raise through fundraising and donations.
We look forward to the new financial year. Our client management system is in place, and we look forward to the efficiencies that we can achieve in recording and reporting, and appropriately managing people with NDIS packages. We are fully staffed, and have State Council agreement to recruit an additional MND Advisor, to extend hours in social media, and increase resources in the Equipment Service.
Our vision remains – a world without MND. We look forward to the day when MND is beaten and we can pack our bags and go home. To support this, MND Victoria has directed over $450,000 to MND research via MND Australia and through our own Nina Buscombe Awards. We look to our scientists and researchers to find cause, treatments and cure for this rotten disease.
And until there is a cure, there is care. And we will be delivering it to all who need and want it.
Until next time.
Rod Harris, CEO
For sometime now we have been working within a constantly changing environment, both within the broader service sector and within our organisation.
People under 65 years of age, who in the past received their services through funding provided by state government, now must become participants of National Disability Insurance Scheme (NDIS) to ensure they receive the services they need; people who are 65 and over must refer to the Commonwealth My Aged Care program for an assessment of their needs and an opportunity to receive a range of funded supports through the Commonwealth Home Support Program or an Aged Care Package. These changes continue to be confusing, challenging and complex for our clients and our team. We aim to keep abreast of new developments as they are rolled out, a continuing challenge in the current environment, and then communicate these promptly and effectively to those clients who will be impacted by the new directions.
I am aware that our method and style of communication may not always be your preference or clear, comprehensive and timely. Please provide feedback to me or one of the MND Victoria team with suggestions regarding how it can be improved. What is your communication preference, how would you like us to communicate with you?
It is vitally important, when transitioning or entering the NDIS to be aware of your options and consider your current and potential support needs. This is best determined in consultation with your MND Advisor who is well experienced to provide information regarding becoming an NDIS participant and the potential needs associated with MND. Our experience is that when our clients have a well thought out and appropriate NDIS plan their support needs are generally well met.
Your MND Advisor can attend your planning meeting with the National Insurance Disability Agency (NDIA) planner. If you want to continue to have support from your MND Advisor then this needs to be identified in your plan. Similarly any equipment you are currently using that belongs to MND Victoria or another organisation must be included in your plan. Equipment is classified as assistive technology under NDIS. Some of our clients have advised us that they have been contacted by an NDIA representative and given very short notice regarding the timing of their planning meeting. They also may ask to undertake this meeting over the telephone. You can request that the planning meeting is conducted in person and you can have any person you wish, a family member, friend and the MND Advisor at the meeting for support.
As this is a new scheme, NDIS staff are also new to their roles and have generic experience only of disability and associated needs. They do not have specific experience or knowledge of specifics especially an uncommon disease such as MND. This has been of considerable concern to us. To address this concern we collaborated with MND Australia and other state MND Associations within Australia and developed a reference tool for the NDIS planners to use when developing plans for people living with MND. This reference document includes a number of hours for therapy assessment, coordination of support, home and personal care and a fixed cost to cover all assistive technology provided by MND Victoria for the duration of the plan. The provision for other supports, as deemed reasonable and necessary, including additional assistive technology will also be included in the plan.
Similarly with people 65 years and older requiring funded supports either to remain at home or enter residential care your MND Advisor is best place to provide with you information and assistance to refer to the Commonwealth My Aged Care program.
Change within our organisation has also been significant. Our new Client Relationship Management System is currently being implemented. We have commenced using it for our client and equipment work and have plans to incorporate our fundraising and membership activities into this new system in the near future.
We have farewelled two staff members, Megan Scott and Vanessa McTackett and welcomed Lauryn Matheson, MND Advisor/Coordinator of Supports based in Ballarat, and Alison Jones, Information and Resourcing Officer. Both Lauryn and Alison have considerable experience in the disability and community sectors and will be great resources for people living with MND, their families and friends, health professionals and our staff and volunteers.
Keep safe and warm during these chilly times. As always we welcome your feedback.
Julie McConnell, Manager Support Services
We welcome Alison Jones to our team in the position of Information & Resourcing Officer.
Alison has come to MND Victoria with a background in health information manage-ment, health promotion & health education, having worked for BreastScreen Victoria, the Cancer Council Victoria and Epworth Hospital.
In her spare time Alison enjoys reading, crosswords, swimming, bike-riding and camping.
We also welcome Lauryn Matheson to our team in the position of MND Advisor for the Grampians area.
Lauryn has come to MND Victoria with a background in Nursing, community health, case management and assessment.
Lauryn enjoys spending time with her family and gardening.
WOLFGANG’S JOURNEY and what to expect
By Erika Reiter
6th June 2015. But it feels like it was only yesterday. The day our lives were changed forever, though we didn’t know it at the time. Started off quite well, going away for the weekend with friends and staying at Geelong, 1 ½ hour trip and bubbling with anticipation for the day to come.
My husband Wolfie is driving as usual. About ½ an hour into our drive, Wolfie mentions he is starting to feel like he is getting a cold, and a headache is coming on. I offer to drive and tell him to try and park on the side of the road, but he says no he can drive (he knows I prefer him to drive, such a sweetheart). We check into our hotel, but next place we go to is a chemist to get Panadol for Wolfie. Then our welcome drink, but he has decided he will only drink water as he doesn’t feel right. Then a stroll along the boardwalk, but Wolfie is walking slower than normal, I feel a little impatient with the slow walk, but also a little upset for him that he is not well, as we were looking forward to this weekend.
That night we are eating at the restaurant, but Wolfie does not eat much as he is under the weather, as he most definitely has caught a virus. In our room, we go to bed and I want to cuddle, but he has asked that he needs room as he doesn’t feel well. I notice when he sleeps that night, that he seems to be breathing very heavy, and think it is a very bad cold/flu that he has caught. He is also sleeping on his back, which is highly unusual, and not turning. I remember lying awake just watching him breathe, maybe in the depths of me a part realised this was a pivotal moment in our lives. Little did I know that from that night onwards I could never snuggle and squeeze him in bed again. That’s how quick the breathing changed for Wolfie.
After returning from our weekend, my husband goes to work on the Tuesday, but returns home early as he really was too unwell to be at work. The next four days he is laid up in bed and does not leave it, and Wolfie has never been sick like this before. After the four days he actually does get over his virus, but he is still walking a tiny bit slower than normal (at this stage nothing to worry about) and I still notice his slightly laboured breathing while laying on his back, which is new and unusual for him to do.
Life moves on in our usual routine, but then Wolfie complains that he is cramping a lot. When he bends over to put on his shoes, he even gets a cramp in his stomach from the effort, all very new and unusual. Then one morning Wolfie asks me to help him with his buttons on his shirt, as his fingers are stiffening. I laugh and say, what, are you getting arthritis, and then happily help him. Still not overly concerned, but tell him that this virus has obviously knocked the stuffing out of him and he should go and see our GP, though he says no he is too busy and the kids at school need him, as he was always a very dedicated teacher.
Moving on to the 25th July and we go dancing at the Austrian Club, a family event. My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs. He is dancing with our daughter, and we are happy, but I am a little concerned that he does not move as well as he used to, but still we do not believe we have any real problem, just that damned virus really took a lot out of him. Wolfie does agree to see a natural therapist, who advises that he notices Wolfie cannot stand on his tippy toes on his left hand side. Little did we know then that this is one of the first signs of MND.
In the next few weeks, we go away once again with friends, staying at Albert Park Lake. We take the tram into the city, have a lovely dinner, but then we all run for the tram, and I notice that Wolfie is not keeping up with us running. This is highly unusual, as with our little group of 3 couples, we are all very fit and active for our age, and my husband is probably one of the fittest.
We then accidentally take one stop too early before our hotel on the way back that night, so we end up having to walk 3 blocks. During our walk to our hotel, my husband makes us stop 3 times as he needs a rest. I tell him quite sternly that he really needs to go to the doctor to see if there is anything still wrong with him. Again he is complaining there is no time, but after constant nagging by me he agrees to see our GP on the 24thAugust.
Our GP immediately tells us he believes that he needs to see a Rheumatologist, and is booked in on the 2nd September. The Rheumatologist takes one look at him, and advises he believes Wolfie needs to see a Neurologist. He points out Wolfie’s hands, and shows that between his pointing finger and thumb the muscles have completely wasted away. Now that he has pointed this out it is quite obvious, but in all honesty we had never noticed that before. His Rheumatologist rings a Neurologist to ensure he is seen to straight away. This is the first time warning bells are starting to ring for me, because if he is worried then we obviously should be.
4th September, appointment with the Neurologist. After this first interview, she advises my husband that she believes he has MND, but with our current technology the only way to find out is to disprove what he does not have, as MND comes under a very broad umbrella.
7th September, Wolfie is hospitalised for a week to undergo numerous tests. One by one neurodegenerative diseases are dismissed, eg. multiple sclerosis, until all tests have been made and proven that he did not have that particular disease, which meant Wolfie was in the category for MND, and there is no definitive test for MND as it is so broad and varied, and no 2 cases are ever exactly alike. Average life expectancy from onset of symptoms is 2 to 3 years. As for Wolfie, his form of MND affected his lungs first and foremost.
From this point onwards, he has regular appointments with his Neurologist, but this is more for monitoring purposes for them, as there is nothing they can do for him. There is one drug, but it does have multiple and varied side affects, and only extends a person’s life by 2 to 3 months, so Wolfie decided he preferred not to go down that path.
End of September and Wolfie has decided to finish teaching, as he physically cannot cope with the demands of the job. Early January we holiday at Nepean as is usual for us. Wolfie cannot do any of our long walks (or any walk for that matter) as we have always loved to do. I drive us everywhere. We drive to the beach each evening to watch the sunsets, but he prefers to sit in the car as the effort to get out is too much. By end of January 2016 we decide to move our bed into our living room, as we have a split level home and it would be easier for Wolfie not to always have to go up and down the stairs. His walking has gone extremely slow, and it is very obvious now that something is severely wrong with Wolfie. His appetite has also been affected, and he has no desire for eating.
There are regular nerve tests, as these track how quickly he is deteriorating. Late March my parents come over for a visit, and they notice that he is half asleep on the couch. I say that he has been like that for a couple of days, but much more so today. My dad said he did not believe that this was normal, and it makes me realise that there is something wrong. I ring the ambulance, and they ask if he is coherent, and I advise yes, he does answer correctly but he does seem a bit dazed. They decide to take him into hospital, and he walks himself up our stairs and into the ambulance. My daughter goes into the ambulance with him, and advises us when we meet at the hospital that by the time the ambulance had driven to the end of our street, he already did not know his own name.
Wolfie is in the Intensive Care Unit, he has had an emergency tracheotomy, and they are advising that when he pulled into the hospital emergency centre he was a code blue with probably only ten minutes to live. I have been advised that we should consider that he may not survive the night.
Next morning I enter the ICU and my husband is sitting up in bed, looking as bright and fresh as a button, saying he is starving and chattering away as if not a care in the world. The trachea has also been removed, and his oxygen levels are now back to normal again. With his type of MND it does not affect his speech or eating, as I have said previously, it is mainly his lungs. I realise what a huge transformation this is, and quickly begin to realise that it is the oxygen that made all the difference. Since the 6th June 2015 he had constant morning headaches, and this morning he had none. The oxygen. If only we had known. And his appetite fully restored. I had gone to the chemist previously to get appetite stimulants, but looks like it is all good now. Unfortunately our Neurologist was not a specialist in MND, and we mentioned the morning headaches to her, but she believed that had nothing to do with his MND. After this episode we were recommended to take Wolfie to the Austin Hospital as they were specialists in this field, and that he should be going to Bethlehem hospital as they specialised in MND, and how very true that was. From this point onwards Wolfie was given a breathing machine, his being a VPAP, which he had to use every night from now on, and for 2 hours during the day. He also never ever had another morning headache again, and his appetite was fully restored from this point onwards.
This machine was a life saver, and returned Wolfie’s quality of life. He had energy again, full appetite, and this stayed with him until shortly before his death. With Bethlehem they organised breathing tests, again nothing to help him, just a monitoring of where he was at. Out of all the constant hospital doctor visits, the most helpful was with the Bethlehem Occupational Therapist as they had numerous ideas and a good understanding of what he would need and when he would be needing it. Our local Occupational Therapist was not familiar with MND, so she started to communicate with the OT from Bethlehem, so we continued to receive the good advice from Bethlehem. At this time we started using a wheelchair. Wolfie also only had one large hospital style chair that he sat on during the day, as he felt most comfortable sitting upright with his feet on the table. Until the time of his death this was always to be the case. We also installed ramps at home, and a stairlift, to make it much easier to take Wolfie out of the house. We liked our regular strolls with his wheelchair, and would go out eating. The only difficulty was the toilet stops, as when you lose muscle control you also lose it down there. When he had to go, I had to get him there as quickly as possible. I am very happy to say he never had an accident, but that I think it was just good luck and management on his behalf, with us always trying to pre-empt what he needed.
Wolfie had weekly visits to a Chinese Therapist, and his left leg was always the first affected, but after a session Wolfie would say that he could feel less numb in his leg after the treatment, but it only lasted for a couple of days, and then the numbness was back to progressing again.
Wolfie’s Dietician advised that he should have a PEG inserted into his stomach, as his lungs would soon not be able to handle this procedure, so he needed it done soon, so 31st May was the day. This was an agonising procedure done under a local as Wolfie’s lungs could not have coped with an operation. For 4 hours he had to sit on his hospital bed with a wire hanging out of his mouth by about a foot, which they had put down his throat. He was extremely uncomfortable. Then the procedure, he could feel every movement, and unfortunately for him it took the doctor a full 10 minutes of pushing and pulling because he could not connect the wire tubing correctly to the hole they put into his stomach. After a couple of days Wolfie came home, but as usual with this disease any trauma always put him backwards, and once you go backwards with MND, you never recover, as the muscles never come back. He moved even less and slower. From this point onwards Wolfie was given nutrients via supplemental feeding, he would have 2 bottles per day, as losing weight is a constant battle with MND, due to losing muscle tone. But his appetite and eating habits were still good right until the end.
Wolfie received three monthly visits from the MND Advisor for our area, and these were extremely informative and beneficial. He advised Wolfie of a very promising trial, the Copper trial, where mice that had severe MND were fully restored and after a usual survival rate of 2 weeks, the mice lasted 365 days after the copper treatment. Wolfie got quite excited and made sure his name was listed as available for this trial. Unfortunately Wolfie never made it on this trial, as every time it was continually postponed. Wolfie’s Neurologist said she was very excited by the possibilities of this trial, a game changer she called it, but she wondered if it would ever see the light of day.
The Occupational Therapist recommended when Wolfie needed to ask for the chairs/beds/bedside commode/bell for ringing for help/eating utensils/cushions for support/air cushions/mattress supports to prevent bed sores/ramps/wheelchairs/lifts/hoists from the MND Association, who I have to say provided all at no charge excluding the stair lift, which was a tremendous help.
17th August and Wolfie is booked again into the Austin for a sleep study, to monitor how he is going with his breathing machine, so they can advise what adjustments needed to be made. His machine dial is now on maximum for humidity, and slowly stronger settings are put in place.
Early September 2016 and Wolfie is seeing a Continence Nurse Advisor, and just in the nick of time, as from this point onwards he is wearing constantly a catheter for weeing, as he physically cannot stand up any longer to pee. This is also a great help for overnight, as his bladder is quite weak from his weakening muscles. It actually, for a carer, becomes a little easier now, as we were getting up beforehand twice a night to cater for his toilet requirements.
Another visit from Eric Kelly, Wolfie’s MND Advisor, and he is suggesting an electric hospital bed, which Wolfie now very much needs, even though he resists going into it. I suppose a part of him knows it is the beginning of the end. But in it he goes as he cannot get himself out of our own bed anymore. Then the electric hoists arrive, which we start to use from around November 2016. The hoists are cumbersome and take a bit of effort and patience to use, but he cannot leave his bed without it. This procedure alone can take up to 15 minutes to set him up into his chair. And how exhausting it was for Wolfie if he needed to go to the toilet soon after, as the 15 minute transmute took a lot out of him, and then to transport him back. Wolfie can now no longer leave the room in which he has permanently lived in for around a year.
By this time things are starting to progress at a much quicker pace, the end does seem to come very quickly. Wolfie’s outlook changes very swiftly, within a week. Wolfie mentions to Eric Kelly that he does not think he can handle things for much longer, he is very morose, and Eric organises with our GP to have Wolfie receive medication to help him.
As it turns out, this is a god send, as Wolfie reacts extremely well with the medication (morphine). He was not in pain from MND, but had a restlessness and just did not feel well within himself before receiving the medication. The medication fixes this instantly, he is on the lightest dose possible, and for the next month is back to his old happy self. Our life is spinning around the personal bathing, feeding, shaving, hoists, medication, catheter leg bags, twice daily cleaning of his feeding tube, but we are actually quite happy, but from a carer’s perspective I have to say this is all quite exhausting.
Wolfie has elected to die at home. After a month on the drugs, Wolfie’s body acclimatized and more drugs were now required. Then the blocking up of his bowels occurred, a side-effect of all the drugs. Now things become really hard and messy, and Wolfie is not experiencing any quality of life, though he can still eat. He never did truly require that feeding tube, though it did help slightly by giving him extra water to try to not become blocked up.
Early January 2017, and Wolfie is complaining that the hoist lifting and moving from bed to chair is becoming too draining and difficult for him. The effort of supporting his head while seated is exhausting, though he refuses to lay in a bed all day. He is extremely upset, and insists on still being hoisted up but is clearly in major discomfort/distress. In this last week, his voice is getting very, very soft, I need to put my ear close to his mouth to hear him.
He is then given an automated drugging system, which helps him enormously, but after a week, his breathing finally gives in to this insidious disease. Wolfie is now at peace. But he has thanked all of us for letting him stay at home and go on his terms. My darling Wolfie you were very much loved, still are, and always will be. That man could make me laugh every single day in his intellectual and humorous way, and he did this until his very last week. I feel very blessed to have been his wife. Just turned 60 years of age. RIP 21st January 2017.
Getting on with life with ALS
By Les Waldron
We will call my MND, instead of all the many names given to this condition, simply ALS will do. I suppose getting on with life after the diagnosis and the aftershock and all that brings, I set about sorting out in my mind, what to do with the rest of my life, however short or long it may be, do I drop my bundle and do nothing, well that was never on, so I was left with one alternative, keep myself and my brain occupied. I decided to do what I could for long as I could do it. I'm at the writing phase, so I'm bombarding Lydia with this endless tripe, it may drive her mad but it will keep me sane.
You know the hardest thing when writing this rubbish is what the next subject might be. I now find myself going over old ground, so I find me with this old wiping post. Giving all that, you must remember it a very important subject, we are talking about the rest of a person’s life. I can only talk about the past for I don't know what's coming next, talk about surprise me.
After the diagnosis, at this stage I could do most things normally, then it came. First of all the hands, then the balance, then the walking first the walking stick next the walker, the wheelchair and somewhere, in between came the speech deterioration, as my ALS progressed I had to modify my activities, so I looked upon this as taking on a new challenge and learn new skills. I hope that my one finger keep's working so I can annoy Lydia.
Walking Back Home
By Margaret Caffyn
Last year I walked 1300 kms from Seville to Muxia in Spain. I have now walked the length and breadth of the country and have written a book about it.
I did some fundraising for MND on the last walk and raised quite a bit of money of which I am proud.
I am also donating $1 from each book sale to MND Victoria.
My book launch was on the 4th June and I donated $1 from each ticket sold; I had some cornflowers for sale as well. I was pleasantly surprised to see cornflowers growing wild all through the Galician region in Spain.
My husband and his father both suffered MND and its devastating effects, so I am really hoping that this will help in some way.
Last year’s Camino walk was raising money for those that can’t do it and it was in memory of my husband and his father.
I carried a cornflower on my backpack on both Caminos.
You can purchase Margaret’s book from her website at: https://walkingbackhome.lpages.co/walking-back-home/
It has been business as usual for our fantastic volunteers over the last couple of months. We have welcomed a handful of new volunteers who are taking up massage, hairdressing and bereavement caller roles.
For those that love a stat, over the last 12 months our volunteers that work with us in our head office have put in 3903 hours. For the volunteers directly supporting people with MND, they have contributed 2098 hours. These are incredible numbers and I thank each and every one of our volunteers who have contributed in some way over the past year. Without you, we couldn’t do what we do.
Daniel Woodrow, Acting Volunteer Coordinator
Travel reimbursement is offered to all volunteer roles
Volunteers needed in the following areas:
Bendigo, Bundoora, Campbellfield, Caulfield South, East Malvern, Essendon, Meadow Heights, Mickleham, Newhaven, St Kilda, Whittlesea
Time required: 2 – 3 hours per week/fortnight
Preferable day: Dependent on client
Duties include: Visiting client in home to provide gentle hand and foot massage
Essential skills: Good communication, enjoy working with people
Hairdressing volunteers are needed in the Melbourne Metropolitan Area:
Time required: As required
Preferable day: Dependent on client
Duties include: Visiting client in home to provide a haircut
Essential skills: Excellent interpersonal skills , enjoy working with people, must be a qualified hairdresser, must have valid driver’s licence and roadworthy vehicle, must have own equipment, willingness to travel outside home suburb area (negotiated).
Visitor - Canterbury
Time required: 2–3 hours per fortnight or 3 weeks
Preferable day: Wednesday or Friday 12.30pm – 4.00pm
Duties include: Visiting client in home
Essential skills: Good communication, enjoy working with people.
Living Well is a group program for people with MND and their carers. Participants have the opportunity to share knowledge and discuss topics relevant to living with MND.
The format of the program varies to suit the needs of participants and may include readings, group discussion, video presentations and guest speakers. Additionally, participants provide each other with support and are able to share ideas and solutions of their own.
What past participants say about Living Well:
“It was a great couple of days, right to the point. I left happy… in a good frame of mind”
“...it has been very enlightening and informative. It also gave me a rare opportunity to meet with others in similar situations and learn from each other”
“We enjoyed it and we got more than we gave.”
Living Through provides an opportunity for newly bereaved carers and family members to meet with others who share similar experiences in an informal and friendly environment.
Participants hear from a guest speaker who presents on typical grief experiences. They also have the opportunity to give and receive advice from one another and have access to bereavement support resources.
Previous participant comments include:
“I thought the depth of the conversation and sharing was engaging and very meaningful.”
“I've surprised myself by how much I got out of the bereavement session.”
Living On is a four week program designed for former carers. It provides the opportunity for people who have been bereaved for 12 months or more to meet in a facilitated group to explore positive ways of moving forward whilst finding ways of retaining treasured memories.
How do you get involved with the groups?
MND Victoria will contact potential participants for the Living On, Living Through and Living Well programs shortly before the groups are run.
However, you are more than welcome to contact MND Victoria to register your interest:
Are you interested in having contact with others living with MND?
MND Victoria can assist people with MND, carers, family members and friends to get in contact with others in similar circumstances.
This can be done through:
- MND Victoria group programs
- Ongoing support groups
- Facilitating contact either in person, by phone or by email
- Referring to external online support groups.
If you would like to be in contact with others, but are uncertain of how to go about it, then contact us and we can talk you through your options.
Are you the partner of someone living with MND?
My name is Gaynor Crossan and my husband Graham has MND. I would like to set up an informal support group and am keen to meet with any other partners who are interested to chat about how we might get this started. I'd like to meet in the Eastern/South Eastern suburbs.
MND Carers Australia
An online support group for Australian MND carers to discuss issues they face. MND Carers Australia is independent from MND Victoria, but has asked us to promote their group. To access the group you will need a Facebook account.
A message from MND Carers Australia’s administrators: MND Carers Australia’s focus is to support the primary carer of someone with MND. The primary carer faces many challenges. They often feel isolated, feeling like no-one understands what they are going through. Only one family member is allowed in the group as the primary carer needs a safe place to discuss any and all issues they may face. This is a private group where you can feel supported, ask questions and vent about the difficulties you face as the primary carer of someone with MND. We hope you will be proactive in the group and gain knowledge from others, but we understand everyone will be at a different point on the MND road. If you would like to join, go to Facebook and search for: “MND Carers Australia”
MND Angels Australia
An online support group for people in Australia whose partners have died from MND. MND Angels is independent from MND Victoria, but has asked us to promote their group. MND Angels offers participants an opportunity to share experiences and support one another. To access the group you will need a Facebook account. If you would like to join, go to Facebook and search for: “MND Angels Australia”.
Kennedy’s Disease Facebook Group
Did you know that MND Victoria also provides support to people living in Victoria with Kennedy’s Disease? Kennedy’s Disease (also known as Spinal and Bulbar Muscular Atrophy) is a condition that has similar symptoms to MND.
One of our members has shared a Facebook group for Australians with or affected by Kennedy's Disease. The group aims to help raise awareness within our communities and to help each other: https://www.facebook.com/groups/340781642962036
Voice Banking Information Session
Calvary Health Care Bethlehem Speech Pathology Department will be running a Voice Banking Information session on 20th September 2017.
What is Voice Banking?
Voice banking is a process that allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. This recording is then converted to create a personalised synthetic or digitised voice.
The voice created will be synthetic and not be a perfect replica of the person’s natural speech, but it will have some resemblance to the person’s natural speech.
Format of the session:
Who should attend:
People who may lose their voice or speech due to their condition. This session would be appropriate for people who are already noticing some changes to their speech or voice.
What the session will include:
An overview of Voice Banking, Message Banking and Story Banking
Enough information to enable most people who are interested to get started
Follow-up 1 to 1 time with clinical staff if needed.
When: Wednesday 20th September 2–3pm
Venue: Magnolia Cottage (entrance from Saturn Street) Calvary Health Care Bethlehem 476 Kooyong Road, South Caulfield
Registration: Numbers will be limited.
Please registar if you would like to attend by contacting the Speech Pathology Department Tel: 9595 3327 – please leave a message if no one answers.
By Dr Graeme Bertuch OAM
Ask the Experts
This years’ research update for MND took place at the Florey Institute on 9th May 2017. The presenters were Dr Brad Turner who heads the MND laboratory at the Florey Institute of Neuroscience and Mental Health at the University of Melbourne, Dr Peter Crouch, researcher, and Ms Silvia Done, Clinical Manager of Neuroscience Trials Australia [NTA] which is a business within the Florey.
[Right] PHOTO OF SPEAKERS: Dr Brad Turner, Rod Harris, Sylvia Done and Dr Peter Crouch
Dr BRAD TURNER spoke on causes of MND, clinical trials for MND, on endaravone, an antioxidant which originated in Japan but has been accepted for use in USA and on MND research at the Florey Institute.
MND can be genetically linked which occurs in 10% of cases therefore affecting family members over generations, or sporadic, affecting the remaining 90% of sufferers. Sporadic MND arises spontaneously and has multiple genes involved, possibly triggered off by environmental, physical or other epigenetic causes such as retroviruses which lurk in our genome. In fact 8% of our genetic makeup is due to retroviruses [AIDS is a retrovirus but not part of our ancient genome] and were probably introduced about 25 million years ago to our primitive ancestors’ genetic makeup.
Dr Brad Turner spoke about retroviruses and about a trial of an antiretroviral medication, Triumeq, to see if treatment modifies the disease.
Also mentioned were physical trauma introduced by sport. There has shown an increased risk of MND among professional football players in Italy over a 10 year period. It is not known whether this was due to extreme physical activity, repeated head trauma, performance enhancing drug abuse or exposure to environmental toxins such as fertilisers and pesticides from the playing fields. Blue-green algae was also discussed as a possible cause of MND. This stems from the fact that on the Pacific island Guam, there was a hundred fold increase in a type of MND related to the eating of fruit bats which concentrated blue-green algae after eating cycads. A protein [BMAA] then became involved in the genetic train and caused the disease.
What relevance is this to MND in general? Researchers look for clusters of disease and regions where blue-green algae is likely to be found for instance around lakes and watercourses, possible regions for concentration of cases.
Recent progress in MND genetics has been exponential. This is especially seen in the genetic causes of inherited MND. Prior to 2007 80% of genetics were unknown, with only the SOD1 gene discovered. Move on to 2017 and only 30% of the genetic causes for inherited MND are unknown.
Below we will reproduce a timeline of Genetic Discoveries, courtesy of Dr Brad Turner. This shows the recent increase of gene discovery largely because of New Generation DNA Technology. Two newly discovered genes were introduced at the meeting. They were ANXA11 and UBQLN4. Although only found in less than 2% of MND cases, their discovery adds more to the mosaic of causes of MND.
Graph – Timeline of Genetic Discoveries in MND:
The genes involved can be divided into 3 groups which affect 3 different anatomical regions on the motor neuron. Those involved with the nucleus of the motor neuron alter the genetic quality control.
Others cause problems in the scaffolding of the motor neuron which is found along the length of the nerve. The motor nerve is the longest in the body at up to one metre in length, and problems in the traffic, or passage of information along this part of the nerve can lead to nerve death. The last group is involved with the part of the nerve which communicates with the muscle and cause waste disposal build up thereby interfering with the passage of electrical signals to the muscle, causing hyper-excitation and eventually death of the nerve.
Dr Turner then spoke about clinical trials in MND, more particularly about two that are undergoing stage 1 assessment in Australia and an antioxidant that has just been accepted for use in the USA. Triumeq, a medication active against retroviruses is under investigation in Sydney and Melbourne. The theory is that ancient retroviruses could be involved in the genesis of MND and the trial aims to see if this medication can supress and alter the disease.
The next trial taking place is based on copper and has started stage 2 testing, once again in Sydney and Melbourne. We will discuss this in the next section which is based around the presentation by Dr Peter Crouch.
The main news of the day was the registration by the FDA of the first new drug for ALS treatment in 22 years. This drug is endaravone, an antioxidant that has been used in Japan for stroke recovery but found to have an ameliorating effect in some cases of ALS/MND. Previous articles have been ambiguous about the efficacy of endaravone, but then when applied to a narrow subgroup of cases of ALS/MND it was found to have some benefit by slowing physical decline. It works on the mitochondria, the powerhouses of the cell found in the nucleus of the motor neuron.
This drug has a few major drawbacks. Currently it has to be administered intravenously on a 2 week on, 2 week off routine for up to 6 months and possibly indefinitely. This is best administered in a hospital setting usually as an outpatient. The next main drawback is the cost. At $1000 per course and $150,000 per year it is an expensive exercise. It has not yet been shown to be efficacious outside of Japan. Currently this drug is not registered for use in Australia.
[Author’s Opinion: Sufferers of MND and their families might be anxious to be able to access this medication, but given the narrow spectrum of MND patients who could use this, the inconvenient administration and given the cost, can it be justified? I think that quality of life should be a major determinant of MND management and I don’t necessarily equate increased life span with quality of life.]
Finally, Dr Turner mentioned future directions for MND research at the Florey Institute. A world first drug screening platform has the objective of “rapid discovery and screening of therapeutics using MND patient-derived cells to identify priority agents in Australia to advance potential clinical trials and off-label treatment”. This screening platform will rapidly screen 1000’s of existing drugs and compounds increasing the efficiency of drug screening for MND by 150 times. Recent funding from the Victorian Government, Cure for MND Foundation and Balcon Group Pty.Ltd. has made the objective into an exciting future for MND research at the Florey.
Dr PETER CROUCH took over the podium to talk on his topic of “The copper drug Cu-ATSM as a treatment option for MND”. This topic has been covered extensively in past issues of the Newsletter [March-April 2016] and in interviews with Dr Crouch [Nov-Dec 2016].
CU-ATSM has been found to be an effective drug in the treatment of mutant SOD1 mice, significantly increasing their lifespan. How does this translate to MND in humans? This compound has been used in PET investigations for some time as a contrast agent. It becomes concentrated in areas of the brain that are under oxidative stress. In some ALS/MND cases one of the defects is a genetic mistake in the SOD1 gene that causes mis-folding of the SOD1 protein. There seems to be an associated copper deficiency in these tissues and Cu-ATSM has been found to deliver copper to cells producing this misfolded protein. This, along with introducing a human copper carrier into the SOD1 mice significantly increases their lifespan. Dr Crouch and colleagues at the Florey Institute found MND-affected tissues obtained from people who died because of sporadic MND had important similarities to mice that responded to Cu-ATSM. This suggests that CU-ATSM may have activity in both sporadic and familial MND and it is now undergoing a stage 1 trial to see if this is so.
SYLVIA DONE through NTA has been involved in the design, execution and management of clinical trials in therapeutic areas for 16 years. She spoke about the processes involved in progressing a potential drug from thought through to a therapeutic option.
The salient points were that from over 10,000 compounds synthesized in the laboratory, ONE compound reaches the market as a new drug. The second point is that it takes an average of 12-15 years to develop a drug at a cost of around $800 million [discovery to approval].
The stages of clinical development are:
1. Pre-clinical testing [2-3 years] consisting of laboratory and animal studies.
2. Phase 1 trials [1-2 years] giving medication to healthy volunteers to assess safety and dosage.
3. Phase 2 trials [2-4 years] giving medication to patient volunteers to assess effectiveness and to look for side effects.
4. Phase 3 [4-6 years] giving medication to a larger number of patients to verify effectiveness and to look at adverse effects from long term use.
Once these phases have been worked through, then the drug company can apply for FDA approval [in America and Australia often follows via TGA], which could take another 1-2 years.
Because Australia has a high biotech performance rating, it is a favoured country for neuroscience trials. It is not a straightforward or cheap process to develop a drug from the initial stages to an end marketable medication.
There are hundreds of researchers working every day hoping to find drugs that can treat MND.
Dr Brad Turner and his crew at the Florey Institute in Melbourne are developing a rapid screening process to look at 1000’s of potential drugs.Dr Brad Turner and his crew at the Florey Institute in Melbourne are developing a rapid screening process to look at 1000’s of potential drugs.
The future is exciting and we are taking massive steps using new technology to find treatments for MND and one day perhaps a ….. CURE!
Research Opportunity for Familial MND Families
Around 10% of people with MND have familial MND, and two-thirds of these individuals will carry a genetic fault in a currently known MND gene, such as C9orf72 and SOD1. Once the genetic change causing MND in the family is identified, relatives can decide whether to have genetic testing to predict whether they are at risk of developing MND in future.
Little is known about how individuals from these families decide whether to have genetic counselling, have genetic testing and undergo reproductive options. In fact, no Australian studies have been performed to date.
If you are from a family with familial MND and there is a known genetic fault in the family, you are invited to participate in an interview by telephone to discuss your experiences of familial MND, receiving genetic information, and any subsequent decisions made such as whether to speak to a genetic counsellor or have genetic testing.
We are interested in hearing a variety of experiences, both positive and negative, old and new. It is hoped that information from this research can guide the MND care and genetic counselling community on best practice guidelines for familial MND. Multiple family members are welcome to contribute by having an individual interview.
This is a 12-month project funded by the MND Research Institute of Australia (MNDRIA) Graham Lang Memorial MND Research Grant 2017 that has been approved by the Human Research Ethics Committee, Macquarie University (Approval no. 5201600879).
Enhancing community knowledge and engagement with law at the end of life
Researchers from Queensland University of Technology (QUT) are seeking participation of adults with motor neurone disease and their family members in a study exploring medical decision-making by and for people with MND
Participation involves taking part in a face-to-face, telephone or Skype interview (around an hour), at a convenient time and location.
Interested patients and family members will be offered information on their legal rights and responsibilities in relation to end-of-life decision-making. To minimise any possible distress, details of counselling services will also be provided.
Researchers at the University of Sydney are conducting a web-based study that is looking for potential risk factors for ALS/MND. The study consists of an online questionnaire, which can be filled out by people both with and without MND. Community members and friends and relatives of MND patients are encouraged to participate since controls are needed as much as people with MND. The results are then compared between people with ALS/MND and controls to look for risk factors that underlie the disease.
The ALS Quest questionnaire
The factors asked about include chemical and pesticide exposures, occupational activities, physical activity, smoking, physical trauma, medical conditions, and stress. The study was launched online in January 2015 and is planned to be active for at least another 10 years, to collect the maximum possible number of responses from around the world.
Translation of the questionnaire into different languages
To date, the questionnaire has been translated into 23 languages other than English by volunteer translators. You can see the complete list of languages available at www.alsquest.org. If a language you speak does not appear in this list, and you would like to help translate it to enable those language-speakers to participate in the project, please contact us (see contact details below).
Which countries have responded to the questionnaire?
To date, approximately 1,000 responses to the ALS Quest questionnaire have been collected. The respondents have been from 32 countries. The map below shows where our respondents live, and how many of them are from each country (as a percent of the country’s population, with darker colours indicating a greater percentage of people). Australia has the most respondents relative to its population, thanks largely to the efforts of MND Australia and state MND Associations in promoting the questionnaire. The United States, New Zealand and Canada are also well-represented.
Early results from the questionnaire
Initial analyses of the questionnaire data have shown interesting results as regards finger lengths, personality type, and the amount of physical activity in ALS/MND. These results will be shared on ALS Quest social media platforms as soon as they are published.
You can follow ALS Quest on Facebook, Twitter and YouTube. Fill out the questionnaire today! Every response counts. www.alsquest.org
Donate to the Tissue Bank of Victoria
“Excellent service. Without this service I hate to think of the extra pressure and worry on top of everything else.”
“Outstanding, really improves my comfort and quality of life.” (Clients commenting on MND Victoria’s equipment service).
As we close out the financial year I’d like to take this opportunity to thank everyone who has supported MND Victoria’s various fundraising efforts. As you may know from past communications, the Association has to generate over $4 million from government and fundraising each year to ensure that the 400+ people living with MND have access to the care and support they need, when they need it. This year the various fundraising activities that took place throughout the year raised $1,763,854. While this is a good result it is 23% below the $2,254,115 raised the previous year.
Why am I telling you this? Because it is a worrying situation, particularly if the trend continues and we see even more of a decline this year. I believe one of the major reasons that we are seeing this decline is the rise in awareness and funds raised by other MND organisations in Victoria. Many people and organisations who previously held fundraising events or took part in challenge events for MND Victoria, such as Run Melbourne, are now supporting other MND organisations because, as they see it, we’re all one and the same and aren’t we all working together?
We certainly commend the work done by FightMND, applaud the funds raised for research, and their contribution to our equipment service.
Without funds we will not be able to deliver the care and support services so vitally needed by someone who is living with MND today, and will be tomorrow. Below are some comments from clients who rely on the MND Advisor services we deliver:
(The MND Advisor) “has an impressive wealth of knowledge with the disease. She has relayed and helped in understanding and has provided immense support.” (MND Victoria Client)
"Our advisor provides us with information as well as other contacts that can help ensure my husband has the best quality of life." (MND Victoria Client)
All of us at MND Victoria would love to see the day when there is a cure for MND, and we can close up shop and go home. But until that day there are 400 Victorians living with the disease every day, and another 160 diagnosed every year, and they rely on our support. If you’ve had a loved one with MND, or are currently living with the disease, you know personally how important it is to have someone help you navigate the system to ensure you are linked in to services. You also know how vital it is to access equipment such as hoists, wheelchairs, ramps, electric riser chairs so that you can continue living as independently as possible, for as long as possible and without the financial worry of how you will pay for these items. As our clients frequently tell us:
“I am so appreciative and could not cope without this wonderful service.”
“Outstanding, really improves my comfort and quality of life.”
Fortunately, last year we received a number of bequests totalling $855,248 which is a wonderful reflection of the commitment of people who have been impacted by the disease and who want to continue supporting our work even after they die. All Bequests are invested in the MND Care Foundation so we can continue supporting people with MND when there is a downturn in our fundraising. But … we do not want to rely on these funds to cover our day to day operational costs.
Thank you very much if you supported one or more of our Fundraising activities last year. Can I please encourage you to continue supporting MND Victoria this year, because Until there’s a Cure …. there’s Care.
“Just want to say a big thank you to all of you at MND Victoria, we are so grateful for all that you do for us, we appreciate you all very much and just continue your work as always.”
(MND Victoria Client)
Around the State
On Saturday, 1 July Jenny Waites, MND Advisor for Gippsland region, was delighted to accept a cheque for $11,466.85 from Lynne Davine, Inner Wheel Area 62 District Chairman. This was the result of many fundraising activities that took place throughout the year to support MND Victoria. In 2016 MND Victoria was fortunate to receive $8,000 from Inner Wheel Club of Bairnsdale so it is very encouraging to see that Inner Wheel is so supportive of the services delivered by MND Victoria. A big thank you to everyone who supported Inner Wheel Area 62. The weather may be on the cold side but that hasn’t deterred a number of supporters attending fundraising events, donating to some great fundraising campaigns and getting active in their pursuits of training for some big events coming up!
Throughout the month of June, Barry Street Lunch in Bayswater donated $1 for every food purchase of $5 of more. We went to visit Mohan, who owns the store and he said he was doing this because a close friend has MND. He understands the importance MND Victoria have in ensuring those with MND can live as comfortably as possible for as long as possible with the required support. Not only did Mohan donate money from the earnings of his café, he helped his friend, Pathmaraj , create an online fundraising page. The generosity of friends and family has been astounding. They have currently raised over $10,000. Pathmaraj, you are an inspiration to many!
On 1 July, the Pacific Pirates Charity Ball was held as a fundraiser at St Kilda Sports Club. It was a fantastic night and everyone went all out with their costumes. It was a great success, raising over $2500 for MND Victoria.
Run Melbourne has been a favourite event for many over the years. This is a great way to push your physical capabilities whilst raising critical funds for MND Victoria. This year we have over 50 entrants taking to the streets of Melbourne to run on behalf of those with MND. If you are there, keep an eye out for our ‘Run to Beat MND’ singlets that participants will be wearing!
In September we have a group of 12 heading to China to walk the Great Wall of China. This is the most extravagant adventure and fundraiser we have ever done. Not only have we got a great group of people, we have a great group of fundraisers! As part of the trip, individuals are required to raise funds that will go directly to the care and support of those living with MND. By Mid-July we have already raised over $55,000 and there is still 6 weeks to go! Everyone coming on the trip has been touched by MND in one way or another. It sure will be a trip of a lifetime with the added bonus of raising funds for a cause so close to everyone’s hearts.
Trekking the Great Wall requires some training so to break the ice and meeting one another we took on Stadium Stomp at the MCG. Walking up and down 7300 is as hard as it sounds. You can follow the progress of this trip on our Facebook page.
There have been a number of schools getting involved with MND fundraising over the last couple of months. We thank all those teachers and students who are behind dress in blue days, bake sales and merchandise selling. All the funds and awareness that is raised is so important!
Gippsland Jersey Farmers get behind MND Victoria
In early June our CEO, Rod Harris, headed down to the small town of Jindivick in Gippsland for a milky variation of the famous ice bucket challenge.
Wendy Gillam is living with MND. She grew up on a dairy farm and it just so happens that a close friend, Sallie Jones owns Gippsland Jersey.
Sallie had the idea of pouring milk over Wendy to raise funds and awareness for MND.
Not only did they manage to raise in excess of $2500 they caught the attention of a number of media outlets in the local area to run a great story on the event and MND.
Thanks Wendy for being a great sport!
Photograph courtesy Warragul Gazette (photographer Davyd Reid).
Drink Tea For MND
Would you like to help people living with motor neurone disease? Active wear and outdoor challenges not quite your thing?
Why not organise a Drink Tea for MND fundraiser with your family and friends or at your workplace or school? Just sit back and relax, knowing you are raising funds to provide vital care and support services for people with MND.
Please start your fundraising page at: https://www.mycause.com.au/events/drinkteaformnd
Please start your fundraising page at https://www.mycause.com.au/events/drinkteaformnd
Walk To D'Feet MND
10am, Sunday 19 November 2017
Oval 3, Princes Park, Carlton
Adults $40, Children $10 (5-18yrs), Families $80 (2 adults + 1 child), $90 (2 adults + 2 children)
3.5km walk on the footpath around Princes Park Carlton (Mel 2B D1). Plus: Free Walk to D-Feet MND T-Shirt, Face painting, Sausage Sizzle, Raffle, Music, Disabled Parking for people with MND.
Awards for: “Best” dressed team, Biggest team, No 1 fundraising team, No 1 individual fundraiser
Register on line at: http://www.mycause.com.au/events/walktodfeetmnd OR complete and return this form
Funds raised enable MND Victoria to provide care and support for people living with MND today and fund research into a cure. Thanks for your support.
For more info and link to registration form see www.mnd.asn.au/walk
Donations were made in memory of
Estate of the late Dudley Barton Adams
Eye Care Plus
Edgewise Insurance Brokers
Bond Security Group
St Barbara Limited
Research in Memory
Mrs F Hammond
Trust and Foundation Donation
The M Georgina Harris Perpetual Charitable Trust
T.O.W.N Club of Victoria
Sweet Classic Cruisers Car Club
Midlands Golf Bowls Club Inc
Pyramid Hill College
Lions Club of Reservoir
Swan Hill Chapter 208
Lion Clubs of Geelong Inc
Rotary Club of Mont Albert & Surrey Hills
Ivanhoe Bowling Club
Clyde Tennis Club Inc
Wandin Park Association Inc
Knoxfield Cricket Sporting Club Inc
For the latest MND Victoria events, please visit our MND Victoria Events listing.
265 Canterbury Road (PO Box 23)
Canterbury VIC 3126
Phone: (03) 9830 2122
Freecall: 1800 806 632
Fax: (03) 9830 2228
Twitter: www.twitter.com/MNDVicInstagram: www.instagram.com/MND_Vic
Reg. Assoc. No. A7518
President - David Lamperd
Vice President - Katherine Barnett
Hon. Treasurer - Jeremy Urbach
Chief Executive Officer: Rodney Harris
Administration Manager: Megan Crellin
Administration Assistant: Babita Narayan
Manager Fundraising: Kathy Nightingale
Fundraising Officer: Daniel Woodrow
Manager Support Services: Julie McConnell
Coordinator Support Services: Janette McDonald
Coordinator Operations: Alia Turnidge
Coordinator Equipment Service: David Harkin
Equipment Officers: Kathy Walker
Coordinator Volunteer Programs: Leanne Conway
Coordinator Information and Resourcing: David Kerley
Information and Resourcing Officer: Alison Jones
Information and Development Officer (digital communications): Heidi Bryce
Last Monday each month at 12.30 pm
Mrs Christine Robson, (03) 9379 7715
St David's Hall, Aphrasia St, Newtown
First Monday every second month at 12 noon
Rev. Ian Parton, (03) 5241 9344
Meets at various locations around Ballarat
Contact: David Kerley (MND Victoria) Tel: (03) 9830 2122 or 1800 806 632