Read our May-June 2017 MND News to find out about the latest news and research and read our latest newsletter!
Download the PDF version of this newsletter: MND News: May June 2017 (PDF 2.56MB)
I am sad to report the death of Elaine Smith, former carer, volunteer and passionate supporter of MND Victoria. Having known Elaine for over 23 years, I have seen her commitment in action as she took control of the Association’s merchandise, was a key link in the newsletter production, and was always available for the varied tasks that get done in our busy office. She will be missed.
The death of Lou Richards, Patron of MND Victoria must also be recognised. Lou was also a passionate supporter of the fight against MND for many years.
I would also like to record the resignation of Eric Mayne as Chairman and State Council member of MND Victoria. Eric has been a significant contributor to the Association and his leadership will be missed.
MND Week is upon us, and the deaths of Elaine and Lou have been balanced by some great news. The build-up commenced with the announcement by Cure for MND Foundation that they were investing in new research grants and partnering with the Victorian State Government in a world’s first technology to scan registered drugs for impact on motor neurones. Nearly $15 million has been invested.
The announcement by the Food and Drug Administration (FDA) in the USA of the approval of edaravone as a treatment for ALS/MND has been received with excitement by the global ALS/MND community. Information is currently sketchy but we have included the current update from MND Australia about edaravone in this newsletter. We will provide information about edaravone through electronic media as and when it is received and evaluated.
Two new genes have been discovered – ANXA11 and UBQLN4 – which play a causal role in ALS/MND in a small number of cases. This discovery will increase the options available for the development of animal models of ALS/MND and for drug testing.
Our Day of Hope and Remembrance service on Sunday 7 May was an excellent start to MND Week. The service provided an opportunity to remember those that have been overwhelmed by MND, carers of them, those living with MND today, and all of the people involved in the fight against MND, including researchers, health professionals, carers, and volunteers. And not just in Victoria, or in Australia, but all around the world. This is a global fight.
Our Ask the Experts at Florey Institute on 9 May was well attended and we heard presentations from Dr Bradley Turner on the state of play in international research and the current focus of his research group. Dr Peter Crouch gave a presentation on CuATSM and its involvement in ALS/MND, and an overview of the current trials being conducted in Sydney and Melbourne with this drug. These presentations were followed by Silvia Done presenting on the clinical trials process. Many questions were asked and responded to during the sessions.
After a lunch break and more discussion, attendees participated in a tour of Dr Turner’s laboratory, and heard short presentations from five groups of researchers about the work they are doing.
At the end of April it was with mixed feelings that we farewelled Peter Allen. Pete has worked with the Association for over 20 years, providing administration and finance support for the organisation.
Pete is moving into another phase of life and we wish him well. I thank him personally for all the support he has given me.
Until next time
Rodney Harris, CEO
Peter Allen back in 1995!
You will be aware that the Victorian Parliament will be considering a Bill to make provision for voluntary assisted dying in the coming months.
MND Victoria has a policy that we support patient’s rights in all things that are lawful.
We recognise that we represent a population that has a wide range of views, attitudes and positions on this and other legislation, and we have to represent a “broad church” of views when we engage in advocacy.
Our policy is a simple statement which may be seen by many as a non-position – sitting on the fence. However, the Association is of the view that our role is to adopt a neutral position on legislation that affects the rights of the Victorian community, and be able to advocate and ensure that any legislation that creates, varies or ends the rights of people in Victoria does not discriminate against people living with MND.
In relation to the Voluntary Assisted Dying bill, we have made a submission on the draft legislation to the Ministerial Advisory Committee, attended meetings and responded to questions posed by the Committee, and contributed to the comments on the legislation by Palliative Care Victoria. We have also met with representatives of Go Gentle Australia. Our communications at all times have been to ensure that people with MND are not discriminated against in this legislation if they choose to exercise the rights it creates.
If you are interested in information about the proposed Bill, the following internet links may be valuable, or search “voluntary assisted dying” on your search engine.
Voluntary Assisted Dying discussion paper -
Go Gently Australia - http://www.gogentleaustralia.org.au
Law Institute of Victoria - https://www.liv.asn.au/Professional-Practice/Voluntary-Assisted-Dying-Bill
Dying with Dignity - https://www.dwdv.org.au/
Calvary Health Care - https://www.calvarycare.org.au/blog/2017/04/20/victorian-voluntary-assisted-dying-bill/
Right to Life Australia - http://www.righttolife.com.au/
MND Information Session
Please visit our Information Services page to find out about our next Information Session dates.
Renewal of MND Victoria Membership
Have you renewed your membership for 2017?
You will have reveived a reminder if your membership is due for renewal. Please keep up your membership - we need you.
March of Faces Banner
The Victorian 'MND - March of Faces' banner series is based on an exhibition that began in the USA in 1997. It features photos of people who have been diagnosed with MND and is used for raising awareness, and in some instances as a memorial. View the existing March of Faces Banner on our website.
Please note: It takes 25 photos to make a banner so it can take a while until we have enough photos to create a new banner.
Over the past month our MND Advisors have been making significant contributions to the development and implementation of National Disability Insurance Scheme (NDIS) plans for our clients who are commencing the process of becoming a participant of the Scheme.
Much thought needs to go in to the development of your participant plan as many of the people working as National Disability Insurance Agency (NDIA) planners do not have experience of a number of conditions, particularly MND, and the disabilities it can create. They ignore the fact that you may already be using equipment from the MND Victoria Equipment Service or another provider and omit to put funding for these, and other items you may need in the future, in the plan. Our Advisors are able to support and advise you during your planning meeting to ensure that the plan reflects your current and future needs. The process of getting a plan review is arduous and fraught with issues so it is preferable to get the plan as ‘right’ as possible the first time. If provision for equipment and coordination of support (provided by your MND Advisor) is not in the plan then you will not be able to access these services from us.
My Aged Care is another new initiative from the Commonwealth Government that can be complex and confusing for people trying to access aged care services. Recently I have had personal experience of complexities involved and strongly encourage those of you who are considering accessing residential aged care to speak with your MND Advisor/Coordinator of Support and seek their assistance and advice. They are highly experienced in both the disability and aged care sectors and therefore your best resource.
Speaking of MND Advisors, I am delighted to introduce Lauryn Matheson our newest MND Advisor/Coordinator of Support who commences in her role on 29 May. Lauryn will work four days per week and be based in Ballarat. Lauryn has gained considerable skills and experience from roles in health, disability and community agencies, her most recent being with NDIS as a Local Area Coordinator.
In April, we farewelled Vanessa McTackett our Information and Resourcing Officer. We wish Vanessa all the best in her new role.
I cannot finish my column this issue without mentioning our wonderful group of volunteers. MND Week and our Volunteer Week celebrations coincided this year. Many of our volunteers joined together on a tour of Old Melbourne Gaol followed by lunch and the presentation of service awards. We are most fortunate at MND Victoria to have 130 dedicated, committed, skilled and caring people who choose to volunteer with us to support people living with MND. Thank you and congratulations to you all.
As always we welcome, and thank you for, your feedback.
Manager Support Services
We welcome Megan Crellin into her new role as Manager Finance and Administration.
Megan has come to MND Victoria with a strong background in not-for-profit (education and health) as well as transport and engineering outside of not-for-profit.
When Megan is not ferrying her boys to basketball games, she loves to keep fit with walking, gym and gardening.
My MND story
By Sandra May Lucas
My mother was diagnosed after two years of tests. When she told me that she had motor neurone disease, I had never heard of it before.
As she had already had it for two years, she firstly noticed it in her legs. She was still trying to clean the house by climbing on furniture and then promptly falling off when her legs failed her. She was bruised and sore all over. I told her not to do that anymore and she promised me she wouldn't.
Not too many weeks later, she rang me crying because she was trying to get to the toilet and her legs wouldn't work and she didn't make it, she was mortified that she had to leave it to her partner to clean up. Mum was a proud, stubborn lady. She hated asking for help but that is what this horrid disease made her do.
After about two years, towards the end of her life, I went up to Queensland to see her. This vibrant beautiful lady had been reduced to an old lady that I barely recognised. She was no longer consuming much food, just drinking fluids.
She could still talk and make sense and we had a good time together. When she was confined to a motorized wheelchair, I purchased a sign for it. Having a wicked sense of humour, she giggled at it and hung it on her chair. It read, "warning, hits people at random". I loved my mum. We had such a great relationship.
She finally fell asleep in 1999. We thought we would never hear about the disease again.
Sadly my brother also got this horrible disease. His decline was rapid. He was diagnosed in late 2012.
He continued to live his life despite having problems with his hands. He would use his dead hand to rest on the vegetables he would chop to make soup for his girls.
My darling brother was also a proud, stubborn man who refused to let MND beat him. As he lived in Melbourne, I visited often. We were the best of mates. He loved a beer and although, I was not much of a drinker, I would share a couple with him. A caring wonderful brother, that I adored.
He loved his two daughters with all his heart.
As he declined so rapidly it was a shock to us all. Once I was helping him to the toilet and helped him to the washbasin, I turned my head to tell his dog to go away and my brother lost his balance and slid down the bathroom wall. Both my niece and I were there at the time.
And we tried to lift him but it was no use, he was over 6ft and had a solid build. We had to ring an ambulance to help, all the time he was telling us that he will get up himself. We put a pillow behind his head and led the paramedics into the tiny room. They also took a while to get him up.
We all decided that he would be better off in a motorised scooter. So when he got his scooter from the wonderful people at the MND Association in Melbourne, naturally, he went out on the road to test his speed. I was screaming at him because he was going to fast and leaning it on the corner, I asked him if he falls out of it, who was going to help him up? Sheepishly, he returned home and apologised to me with the biggest grin on his face that reminded me of my own sons delight on Christmas day.
About June that year, he could no longer live at home, so he was transferred to Calvary Health.
There he made a great friend and together they would race each other along the corridors, terrorizing the nurses and staff. He had a lot of fun there.
Shortly before November, he lost his speech. He relied on a talking machine. He hated the hospital and wanted to be home but the rate of decline was so steady, sadly this was not possible.
As Christmas neared he was trying desperately to get home for Christmas dinner but he was too weak. I hated to see him so reliant on people for his daily care. I know he hated it too.
When he and I were on our own, I whispered in his ear. I told him that if he needs to go, it's OK. Your girls will be fine, I will be there for them. He died the next day. He took his final breath on the 28th of December 2013.
Here is my beautiful mum, Nancy three days before she died with my brother Steve, before he was diagnosed, and myself. Miss you both, terribly. I pray for a cure for this disease so that nobody has to die.
I also pray for my family who have a 50/50 chance of developing the disease.
Unfortunately this is not the end of our MND story. Another member of my family is suffering from this terrible disease at the moment.
She developed symptoms about a year and a half ago. Her swallowing has suffered and there is not much of her, she is very thin. She has been put in hospital a number of times with malnutrition because she only drinks milk coffee. We have discussed her having a PEG for feeding and she refuses to have one. She has a proud stubborn streak as well.
Recently she has lost the use of her right hand, she can no longer walk her beloved dogs. She still has her voice, knows what she wants and is too stubborn to take advice. She has always dressed to
the nines and has always been very beautiful. We also have a wonderful relationship.
More recently, she needs help to shower, so she has carers a couple of times a week. Even though she is very sick, she still acts and dresses like the lady she is.
This terrible disease has robbed me of my mother and brother and soon another family member.
As you will have worked out, we have the inherited form of the disease. I believe the first person who lost his life in our family was my mum’s uncle Ted. I never met him.
There are 20 members of our family left, who all have a 50/50 chance of developing symptoms. I don't want to see my three children, five grand children, three nieces, one nephew and my other siblings suffer with this fate. I don’t want to see anybody suffer this fate again. I pray for a cure every night.
A HUGE thank you to everyone who got involved and attended our Day
of Hope & Remembrance and Ask the Experts events! #NeverGiveUp
Geelong Day of Hope
The Geelong Day of Hope and Remembrance was held on Sunday, 7 May at St Luke's, Highton.
Thank you to guest speaker Peter Simko from Rock Off MND and Rev Ian Parton for leading the service.
“We celebrate the selfless individuals around our country who channel their civic virtues through volunteerism... devoted to a cause bigger than themselves.... Volunteers help drive our country's progress, and day in and day out, they make extraordinary sacrifices to expand promise and possibility.” ~Barack Obama, 2016 April 8th, quoted from The White House Office of the Press Secretary
National Volunteer Week (NVW) is an annual celebration to acknowledge the generous contribution of our nation’s volunteers and is held during the second week of May. Established in 1989, National Volunteer Week is the largest celebration of volunteers and volunteerism in Australia, and provides an opportunity to highlight the role of volunteers in our community and to say thank you to the more than 6 million Australians who volunteer.
This year, our NVW celebration was held at the Old Melbourne Gaol where thirty of MND Victoria’s
volunteers enjoyed a guided tour of the Watch House and Gaol followed by lunch at the Old Court House.
Years of Service awards were presented to the following people:
2017 Volunteer Week Celebration
Group photo (top), Ian Parton 25 year award, Barwon Support Group
and Marie Healy 10 years our recently retired Hairdresser
It is with sadness that I report that our long-time volunteer Elaine Smith died in April. I am sure that many of you would have had dealings with Elaine over the years.
Elaine untiringly and continuously gave her time to MND Victoria for more than twenty five years. Elaine was a quiet achiever who went about her work efficiently and effectively without needing continual management or recognition. She was a stickler for the fine detail (she would certainly know if you moved something in her work space) and had strong organisational skills. Elaine readily lent a hand when needed.
Over the years, Elaine had many volunteer roles. In the early days, she was involved in the organisation of the yearly fetes held at the old Caulfield premises and spent quite a number of years on the newsletter mail-out team. Her last role was managing all of our merchandise and Christmas cards, as well as being “packer extraordinaire” for anything that needed posting.
Elaine loved everything royal so was the perfect candidate to present flowers to the Duchess of York when she met members and friends of the Association at Caulfield Town Hall in December 1994.
I am sure Elaine performed many other duties over the past twenty five years – probably too many to name. Throughout it all she did it tirelessly and willingly and we will be grateful for her service. She will be missed.
Leanne Conway, Coordinator Volunteer
Travel reimbursement is offered to all volunteer roles
Massage – Volunteers needed in the following areas:
• Caulfield South
• East Melbourne
• Meadow Heights
• St Kilda
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”.
Support services for carers of people with MND
- Carers Victoria - (03) 9396 9500 www.carersvictoria.org.au
- Carer Gateway - 1800 422 737 www.carergateway.gov.au
- CareSearch - www.caresearch.com.au
- MND Victoria - (03) 9830 2122 www.mnd.asn.au
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/
In February 2017, MND Victoria launched a brand new initiative Come walking, get talking, a walking group for informal carers of people with MND, such as family members and friends.
The walks were held at Fairfield Park, Brimbank Park, Royal Botanic Gardens Melbourne and the Mordialloc foreshore. Conversation followed naturally and the participants met at a café to talk further after each walk.
Feedback from the walks included:
“I enjoyed very much the walking time with other carers. I can share my feelings with ... family and friends but it is much easier for me to open my mind to the person who is in the similar situation with me.”
“The walk and talk event was well organised by MND staff particularly selecting a peaceful location and who made everyone feel welcome. Personally, I found great benefit in slowing down”
By Dr Graeme Bertuch OAM
Doctor ..... I’ve just been diagnosed with MND! What can I expect?
In this article we are taking a tour through the multiple presentations and posters from the Dublin Conference in December 2016. Here we were presented with extensive information from multiple researchers from around the world and we will examine some articles that may challenge some of our established tenets. This is up to date information and will give some insight into latest management of MND. As in the last newsletter, the Dublin conference presentations are nominated by the prefix C followed by the number on the programme. The poster presentations are prefixed by P followed by the number in the programme. Some information is quoted from a conference in May 2016 held at the University of Milan in Italy [prefix Encals].
Let’s start by looking at Multidisciplinary Clinics [MDC’s]. Certainly these clinics coordinate care through a multidisciplinary approach but do they make any difference to life span for a person with MND?
Disciplines of physiotherapy, occupational therapy, dietetics, speech pathology, social workers, respiratory physicians and even neurologists are available at an MDC. A coordinated report can then be forwarded to community contacts to assist in the wider management of the patient. A poster from Harvard Medical School, [P384] made the statement that “MDC’s enable people to live longer and have an increased quality of life.” The poster was looking at the cost to the community of providing MDC’s. However a Cambridge University study [ P386] compared patient groups before and after establishing an MDC in 2005, and essentially found no significant increase in survival between the 2 cohorts. However there was a greater referral for NIV [non-invasive ventilation] in the “after” group.
A Canadian study [P391] showed a more accepting attitude to life extending measures as MND progresses made easier by attending MDC’s.
Apart from the obvious muscular weakness and possible difficulty in swallowing, there are other complex changes that can occur. Each person affected could experience these to a greater or lesser degree, such is the weirdness of MND. Let us start with cognition! Wikipedia defines cognition as “the operation of the mind by which an organism becomes aware of objects of thought or perception. It includes mental activities associated with thinking, learning, memory judgement, and evaluation, reasoning and computation, problem solving, comprehension and decision making”. Cognitive impairments have been shown to occur in up to 55% of patients with MND in a study from the University of Edinburgh [Encals P 58] and behavioural symptoms in 15%. A study of decision making in regard to management [P302] showed cognitive defects can cause problems when it comes to decision making about such measures as taking Riluzole and NIV while adopting more aggressive measures for end of life choices. A study [P66 Encals] from Germany showed relevant decisions were made with respect to treatment, but a more aggressive stance was taken with end of life decisions such as ventilation and termination of other treatments if in terminal decline. This also extended to Assisted Dying, a choice because of availability in Europe.
The most common cognitive disability is Initiation Apathy which causes difficulty in self-generation of thoughts and speech. Executive dysfunction is also a related problem. Cognition changes seem to occur early in the development of more acute onset MND before motor deficit. [P300]. Females tend to have different coping mechanisms to males [P301] being much more negative and using denial. Females also have a much higher incidence of bulbar onset and this may have something to do with this finding. Thinning of part of the brain called the cortex which is the outer layer of neural tissue of the cerebrum can be associated with cognitive impairment seen in language, social cognition, and episodic memory][P312].
Emotional lability was found in 35% of a group of patients from Dublin [P314] and this was mainly in males where crying or laughing occurred but these patients were not found to have any difference in cognitive, behavioural and psychological status over the other 65%.
Depression and Fatigue
On the surface, these could be closely related but there are some important factors during development of MND that differentiate them. There has been shown to be an increase in depressive symptoms for the first 2 years after diagnosis [C26] with a higher risk of depression before and after diagnosis. [Swedish study Encals P65]. This probably reflects the all too often delay in diagnosis and limited understanding of the disease by the newly diagnosed patient. A large study from London [P320] found that around 11% of patients developed depression and almost 14% anxiety, with females having a higher anxiety rate but depression about the same percentage male/female. Bulbar onset and fatigued patients had higher anxiety scores. Motor disability did not predict depression, but a respiratory disability did. Anxiety was more related to quality of life and motor disability. Fatigue is an interesting symptom in MND. Fatigue can be related to depression and in fact that is one of the things your doctor will ask you about if he/she is looking at making a diagnosis of depression. However fatigue is common in MND and only occasionally due to depression. There is a rise in energy needs occurring alongside worsening glucose clearance, which may lead to weight loss because lipids are then used for energy requirements. The skeletal muscle of patients becomes energy hungry [notice the constant fasciculations and spasms!]. This energy hunger is being investigated by Dr Shyuan Ngo from the University of Queensland [MND Advance Dec 2016].
I believe that this high energy requirement and a subsequent alteration in glucose/energy metabolism leads to fatigue more so than does depression. In a study from Liverpool [P381] fatigue was found to be more common in limb onset MND and in patients with neck weakness, fasciculations and cramps. It did not show a significant correlation with bulbar involvement or ventilation impairment. This finding of fatigue is almost certainly due to the constant fasciculations in limbs that are not paralyzed. Once muscles are denervated they don’t have the same frequency and strength of fasciculations, twitches and cramps [personal observation]. The muscles that aren’t paralyzed in the flail limb variants still fasciculate, spasm and cramp. This would also support the energy hunger hypothesis above!
Home exercise was shown to help in maintaining respiratory function [P367] in the early stages of the disease. This was compared to a control group who only had “standard” physiotherapy and the improvement was maintained for 6 months. Bulbar and lower limb function was also better maintained. Another presentation from Holland [C63] showed that aerobic activity was only good for patients with slow disease progression and a spinal onset. The idea was that exercise will help to avoid cardiovascular deconditioning and disuse weakness.
Survival and PEG Tube
Now let us get to the crux of the matter and what makes a difference to survival. Riluzole can add a couple of months on to the count, and so far it is the only recognized medication on the NHS for MND, but more of medications later. Gastroscopy and PEG placement is almost mandatory for patients with bulbar and rapid onset MND [P349]. A PEG tube is best inserted prior to significant weight loss and with these patients can lengthen survival. It certainly streamlines management making feeding and medication much easier to administer. In patients with preserved bulbar function, weight loss greater than 5% and decreased FVC [respiratory function test], a report showed increased mortality [C48]. PEG may slow weight decline but does little to influence survival in these patients [P345]. This would also apply to limb onset patients and slower forms of the disease. So it would seem PEG tubes are not indicated for every patient!
Survival and Ventilation
Non invasive ventilation (NIV) has been the major treatment shown to increase survival by up to 12 months. NIV reduces the symptoms of hypoventilation and improves the quality of life [C65 & Motor Neurone Disease handbook P135]. Initiation can be a problem in the cognitively impaired and those with poor social support. Invasive positive pressure where a tracheostomy is inserted is rarely used in Australia and diaphragmatic pacing [P330 electronic stimulation of the diaphragm] has limited usefulness. Breath Stacking [P323], which is blowing into a lung volume recruitment bag, a bit like blowing up a balloon, can help with maintaining lung compliance and also in secretion clearing and coughing. This is usually initiated by the physiotherapist.
Survival and Pharmacology
Medications in the pipeline to treat MND are many. Let us look at a few mentioned at Dublin that are in the news. In Italy [C62] a trial showed that cannabiniods [the medicinal extract rather than the good stuff!] is efficient in treating spasticity. None of the participants withdrew from this study and 55% showed improvement. Botulinum toxin [Botox] is effective for cramps [P112] and riluzole can decrease excitation at nerve endings and increase life for those with MND by a couple of months. A Chinese medical formula potentially showed promise in extending life [P253] BuNaoGao [BNG] taken for 4-6 months was shown to increase survival by greater than 4.5 months for each month of taking BNG. This was measured over “historical controls”. Interesting but worth looking at, it’s just that those Chinese concoctions are so hard to take! The study was done in Lexington, USA. The Japanese are keen on edaravone [C89] a free radical scavenger [antioxidant] but a study in Istanbul [p258] showed no difference to survival time. In Boston, a trial of Inosine which promotes high urates [the acid that causes gout] was hoped to increase the survival of patients because it has been found epidaemiologically that people with high urates have longer survival. Other significant drugs under trial are Copper-ATSM now being trialled in Sydney [see previous MNDRIA newsletter and our previous MND Vic newsletter about our own Dr Peter Crouch], and newer medications that get harder to pronounce such as rasagiline [already used for Parkinson’s disease] and masitinib [C98] which regulates neuroinflammation.
So what measures increase survival at present? It would seem NIV is the most significant option available. PEG tube placement for Bulbar onset and Rapidly Progressing MND can make a difference, Riluzole can help a bit with life extension but also can have side effects and therefore affect quality of life and BuNaoGao looks promising and needs follow up. What can we use for troublesome symptoms? For the persistent fasciculations, spasms and cramps, little seems to make much difference so perhaps medicinal cannabis may be worth a trial when it becomes available.
This is only a fraction of the information presented at the Dublin and Encals Conferences. I have tried to glean the bits that we can understand and leave the technical stuff for the geeks!
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.
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).
ALS Quest - a survey looking at risk factors for MND
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
You don't have to be a genius or a visionary or even a college graduate to be successful. You just need a framework and a dream. Michael Dell, 1965-
As most of our readers know, the first full week of May was MND Awareness Week and for me this is a time to reflect on how this disease impacts people long after their loved one dies. Just recently I was talking to someone whose husband had died from MND many years ago, but it is only now that she feels able to actively promote awareness and participate in fundraising activities. On the other hand some people start fundraising within weeks of their family member or friend being diagnosed. Regardless of when they start, it is always inspirational to me to hear their stories and it makes me even more determined to ensure that MND Victoria supports them in every way we can to ensure they are successful. And that success is not measured in dollars, but rather in helping them achieve the goals they set for their event.
It’s now almost four months since Daniel Woodrow joined the Fundraising team and his commitment to supporting community fundraisers reflects his desire to raise funds so that the association can continue to deliver care and support services to Victorians living with MND, as well as investing in research.
Thank you again for all your efforts – from holding Drink Tea for MND events at home or your workplace, to participating in Challenge Events such as Run Melbourne. The funds you raise are vitally important as they help ensure hundreds of people in Victoria living with MND are able to live the best life possible as their disease progresses.
Around The State
Wandin Park Equestrian Event
On 18-19 March 2017 Australia’s best equestrian riders competed in the Wandin Park International Horse Event. Entry was by gold coin donation to MND Victoria. A huge thank you to the seven volunteers who helped out on the day.
Thank you to Wandin Park for supporting MND Victoria again this year and raising $4,000.
Innerwheel Fashion Show
Inner Wheel District A62 in Victoria have been supporting MND for the last three years; in the first two monies went towards MND research, and this year and next year, money will be going to assist people with MND now, to make their lives a little more comfortable.
The Inner Wheel Club of Bairnsdale held a fashion parade on April 29 in the St. Mary's parish hall to raise money for this worthy cause. Rachel's of Bairnsdale provided 75 items from their new autumn and winter collection. Some models were provided by Rachel's and some came from the Inner Wheel club.
Clothes from casual to formal were shown with the finale being some glorious wedding dresses and evening attire. A wonderful afternoon tea was provided by club members and thoroughly enjoyed by the 140 people in attendance. Just over $3,400 was raised which was a superb effort. This money, together with other smaller fundraising efforts throughout the year, will be going to the district treasurer soon, to be then forwarded on to MND Victoria.
Recently we received $372.55 as a result of having an MND Merchandise box in the Torquay Pharmacy. We appreciate the support of the owners of the Torquay Pharmacy for having an MND Merchandise box on display in memory of Darryl Lacey, as well as everyone who contributed.
Geelong Walk to D'feet MND
The annual Geelong Walk to D’Feet MND took place on Sunday 26th of March.
A huge congratulations and thankyou to our fantastic Geelong community who help grow this event each year. It was an amazing sight to see hundreds of people all dressed in our white Walk to D’Feet MND t-shirts gather at Barwon Valley Fun Park in Belmont. We had many people go the extra mile with their choice of outfit and even had a number of fury friends join in the festivities.
After final registrations were complete we had a couple of speeches and some music from a local school band.
The participants got on their way walking as one along the figure 8 course. With a number of enthusiastic kids leading the way we all completed 2 laps and finished with some more socialising and too many sausages that were being cooked by some of our fantastic volunteers.
Not only did the day bring a great amount of awareness in the Geelong area to MND, a total of $32,000 was raised. This is an amazing effort to all involved and we can’t thank everyone that participated and donated in one way or another enough.
We are looking forward to next year’s event already!
Susie Harris Memorial Fund Car Show
The Susie Harris Memorial Fund held its 6th annual Car Show on the grounds of St Leonards College on Sunday 30th April. The day was a stunning success with over 180 cars on display and over 400 people through the gates, all being given a flyer about the Susie Harris Memorial Fund and MND. Everyone was able to enjoy not only the huge range of cars but also the band playing on the main stage, BBQ in full swing and barista working overtime. It was great to see so many families enjoy the event especially all the children playing on the late Susie Harris Memorial playground at St Leonards. It was a sensational family day that not only raised over $10,000 profit but also raised awareness of MND.
Michael’s 50th Birthday
Photo: Vasiliki, Foti, Kate, Michael, Sophia On April 29th a great time was had as family and friends celebrated Michael Karamitos’ 50th birthday. Instead of gifts Michael asked his family and friends to give a donation to MND Victoria in honour of Filanthi Lizardos who died from MND in 2015. At the time of writing over $14,750 has been raised through this event. When added to the $64,000 raised in 2015 this brings the total to almost $80,000; a remarkable acknowledgement of how much Filanthi was loved by all her family and friends.
Whittlesea Secondary College Basketball
MND staff member Daniel joined the students vs teachers basketball match at Whittlesea Secondary College. This was part of a week long fundraising spectacular at the school raising funds for MND Victoria. Daniel also gave a presentation on MND to around 70 students in the auditorium before three teachers had the pleasure of having a bucket of iced water thrown on them.
Vicsens Never Give Up!
Claire writes, “This group of strong fierce Vicsen women decided to take on the world in the game of softball at the World Masters games in Auckland in May 2017. We played teams from New Zealand, Canada and Italy to win a bronze medal. It is tradition that each team exchanges an item at the end of the game as we shake each other's hand in appreciation and in the name of sportsmanship. Usually the items comprise of something small in acknowledgement.
Our team decided to do something meaningful and purchased a large number of the "never give up" bracelets to support funding to curtail this beast of a disease. With pride we handed over the bracelets to many softball teams from different countries to increase awareness, and raise funds in memory of my much loved uncle who was taken way too soon by MND. The support from the Vicsen team meant the world to my sister and I, in loving memory of John Ryan- RIP.XXX”
Challenge yourself in 2017!
Challenge events are a great way to accomplish something for yourself and also a great way to fundraise for a cause close to your heart.
Over the years a huge amount of people have found an event they feel is a challenge where they can accomplish something great and also raise funds for MND Victoria. These funds are so important to those living with MND. They provide care and equipment to help provide a good quality of life.
In the remainder of this year we have four events taking place. We encourage people to enter and join our relevant My Cause page to raise funds. Everyone who joins receives one of our ‘Run to Beat MND’ running singlets. We want you to be a part of our team! Whether you have a family member, friend, colleague with MND, or just want to make a difference to all those living with this horrible disease, 2017 is your year to make a difference.
Do it for yourself and do it for those living with motor neurone disease.
Visit our Upcoming Challenge Events page to get started.
2-12 September 2017
From time to time, MND Victoria is approached by companies who provide supports and services suitable for people living with MND. While we have no professional affiliations with these companies, we recognise that this information may prove useful to you. Several companies in Victoria provide services in vehicle modification to create wheelchair accessibility.
Recently, we were contacted by Freedom Motors Australia, a company working in the area of vehicle modification for disability, and agreed to publish this information on their behalf. MND Victoria recommends you seek advice from your Allied Health Professional before going ahead with any modifications to your vehicle and to also consider a range of companies to select the best provider for your needs.
“I would like to introduce our two companies Freedom Motors Australia Pty Ltd & Freedom Access Vehicles Pty Ltd.
Freedom Motors Australia Pty Ltd modify vehicles for Wheelchair accessibility via a low floor rear access conversion. The vehicles are modified at our major production facility here in Sydney and we modify these vehicles for clients from all over Australia, whether it be for Private use / Community Transport & or Wheelchair Accessible Taxi use.
Our sister company Freedom Access Vehicles Pty Ltd is also a very well respected modifier of vehicles such as LDV ,Toyota Commuter, Toyota Hi- Ace, Toyota Coaster, Mercedes Benz Vito Mitsubishi Rosa Bus , Mercedes Benz Sprinter plus many other vehicles. These vehicles have varying fit outs dictated by the customer’s requirements and are generally utilized for transporting more than one wheelchair occupant at a time. The fit outs consist of a Braun Electro / Hydraulic lifter plus a full range of product which includes seating, hand rails and side steps for easy entry plus many other innovative products.
We have been converting vehicles in this way since the mid 90’s for customers from all across Australia. You can see the testimonials from many happy customers on our Web sites listed. The Freedom Group are registered NDIS providers Australia wide.
Both Freedom Motors Australia & Freedom Access Vehicles pride ourselves on quality and providing a product to suit our customer’s needs. All vehicles are modified by qualified trade professionals. We also offer a professional mobile service facility and our service technician Dimitri is widely recognized as the best in the business.
We look forward to further discussions and we await your reply should you require further information. Upon request we can arrange for a demonstration of one of our modified vehicles for you at either our premises or yours. We can be contacted on 02 96734033 or FREECALL 1800672437.
Garry J Dale
National Group Sales Manager
Freedom Motors Australia Pty Ltd & Freedom Access Vehicles Pty Ltd"
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
Please submit copy for our next newsletter by July 6, 2017.
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
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
Support Service Officer: Alia Turnidge
Coordinator Equipment Service: David Harkin
Equipment Officers: Kathy Walker, Alia Turnidge
Coordinator Volunteer Programs: Leanne Conway
Coordinator Information and Resourcing: David Kerley
Information and Resourcing Officer: Position currently vacant
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