Read our September - October 2017 MND News to find out about the latest news and research!
Download the PDF version of this newsletter: MND News: September-October 2017 (PDF 2.7MB)
We are well into the new financial year, and fast approaching one of the largest transitions to the NDIS.
To support every person eligible to seek support via the NDIS, we have created and filled a new MND Advisor position, and have flagged the creation of two additional positions as we measure the impact of those areas coming on line over the next nine months.
We have written to all potential NDIS participants and highlighted the need to contact your MND Advisor as soon as you have any contact from the NDIA, the organisation managing the scheme. Early discussion with the MND Advisor will ensure that your needs and wants are accounted for in your initial plan of supports, and that we can get it right the first time. MND Advisors are available to help you and represent your needs and the issues surrounding the diagnosis of MND. Please remember that if you currently have disability aids and equipment from the MND Equipment Service these need to be funded by the NDIS and included in your support plan.
Our China adventurers will have returned and as I write this they are winging their way back to Australia. They have had a challenging time walking the Great Wall, reflecting on their links with MND through family and friends, and addressing the challenges that the walk has put before them. Their efforts to raise funds from participating in this adventure have been remarkable – they have raised just over $110,000! These funds are applied to the delivery of care and support for people with MND, and contribute to the costs of the MND Advisors, our Equipment Service, and our Information and Resourcing service.
Next year we are organising a walk on the Kokoda Track – will you challenge yourself to participate in this adventure of a lifetime and raise funds for the fight against MND?
As the summer is coming, so are our Walk to D’feet MND events. These are fantastic social events, bringing together families, workers and supporters to demonstrate their commitment to each other and the fight against MND. They are also great opportunities to raise funds, and seek sponsorship for your participation to support for MND services and research. Please look at our website – www.mnd.asn.au/walk – and register online. We have great new t-shirts for all registrants, and mechanisms to support your efforts to secure sponsorship and raise funds.
The Voluntary Assisted Dying legislation will be presented to parliament soon. We have continued our position of neither supporting nor opposing this legislation. MND Victoria represents a broad church of people, and we do not seek to press for either view. However, we will support absolutely the rights of any person living with MND in all things that are lawful.
Our community is about to be asked about another “rights” issue, in the postal vote on changes to the Marriage Act. I encourage everybody to vote in the postal survey.
Finally, our AGM is on Monday 16 October 2017. Our guest speaker is Professor Margaret O’Connor, who has been a member of the Ministerial Advisory Panel on Voluntary Assisted Dying. Come and hear about the progress of the Association, vote, hear Prof. O’Connor and meet up with old friends and new.
I look forward to seeing you there.
Until next time.
Rod Harris, CEO
Hello again. As I am writing this it is hard to believe that it is spring, the season of expectation, new growth and promise.
As in most of my recent newsletter pieces I am again writing about accessing the National Insurance Disability Agency (NDIA) for those of you who are under 65 and will still be under 65 when the NDIS rolls out to the area where you live. I am sorry to harp on about this, particularly for our other readers who have little or no interest in the NDIS however it is vitally important that those of you who have the opportunity to become a participant in the NDIS are aware of how to make the most of all it promises.
We know that our clients who are eligible for the NDIS are currently being contacted by a representative of the NDIS with the view to commencing the plan development process, in many cases even if they are not in a current roll out area. It is extremely important that you are well informed, have thought about how you want to live your life and what type of support you need to make this happen and live as well as possible. During your meeting with the NDIS planner you will be asked many questions. One of these will be about your ‘goals’. This is because all funded supports are assessed as to whether they are ‘reasonable and necessary’ to assist you to achieve your goals.
I strongly encourage you to engage in pre-planning with your MND Advisor as soon as possible to begin to understand the opportunities available through the NDIS and how to ensure your plan will provide for your needs. Your MND Advisor 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 NDIS planner. If you want to continue to have support from your MND Advisor then this needs to be identified in your plan under Support Coordination. 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 NDIS representative and given very short notice regarding the timing of their planning meeting. You can request that the planning meeting is conducted at a time of your choosing, in person, in your home and you can have any person you wish, a family member, friend and the MND Advisor at the meeting for support. Again I strongly encourage you to have the support of your family or friends and the MND Advisor. The NDIS is very new and most of the people working in the NDIS have little knowledge or experience of MND. They need guidance. It is difficult to have your plan reviewed in a timely manner if it is incorrect therefore it is best to get it right the first time. This is a lot more likely with good pre-planning and preparation supported by someone with expert knowledge to assist.
NDIS local area coordinators and planners are new to their roles. They do not have specific experience or knowledge of 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 information is available for you, just contact your MND Advisor.
There has been another staff change within the Support Services Team. To address the increased demands of the NDIS, State Council recently approved the appointment of a new MND Advisor. Leanne Conway, previously the Coordinator Volunteer Programs, has been appointed to the role. Leanne has already been working in this role in a temporary position since earlier this year to cover a period of staff leave. I feel confident that Leanne will bring the same dedication, commitment and skill that she showed as Coordinator of Volunteer Programs. I am delighted to welcome her as our newest MND Advisor.
Vale Sue Sweeney
Some of you, I am sure will remember another of our MND Advisors, Sue Sweeney with warmth and fondness as we all do.
It is with a heavy heart and great sadness that we share news of the death of our colleague and friend, Sue Sweeney. Sue died on Saturday, 26 August peacefully at home with her two sons, Tom and Ben, her sister, brother and close friend by her side as was her wish. Sue was 61.
We farewelled Sue from our team at the end of 2015 as she headed off to retirement with lots of plans which included much travel. Unfortunately, just prior to commencing her retirement Sue had become ill. Although receiving constant medical care Sue still fulfilled her dream of traveling to Canada and the USA on an extended holiday.
She had a wonderful time. Earlier this year, however, the medical treatment was no longer able to keep her well. At the end of August, at home, in the company of her beloved sons, sister, brother and very close friend I am very sad to advise that Sue died.
Sue was an integral part of our team for more than four years. With her bright and sunny personality, excellent skills and experience and dedication to improving outcomes for people living with MND she was a valued colleague, friend and resource for us all.
Sue, with her sense of fun, courage, caring and commitment, will be remembered fondly with warmth and admiration by all whose lives she touched. She was indeed a very special lady. The world is a darker place without her here.
Keep safe and warm during this changeable weather.
As always we welcome your feedback.
Julie McConnell, Manager Support Services
Renewal of MND Victoria Membership
Have you renewed your membership for 2017?
You will have received a reminder if your membership is due for renewal. Please keep up your membership—we need you.
Next MND Information Session
Please visit MND Victoria Events for further information
Hello everyone. It is with mixed emotions that I write this. After seven years as the Coordinator Volunteer Programs, I have decided to step down from the role and take up a new position as MND Advisor. While my new challenge is very exciting, I am very sad to leave ‘my’ volunteer team.
I would like to say thank you to all the volunteers past and present who have been part of this amazing team. Over the past seven years you have delivered close to 50,000 hours to the Association in such a variety of ways and we are very grateful.
It has been a pleasure and a privilege to work with a group of people who on the whole, make my job easy. It is not often you can say that you love your job, but for the past seven years I truly have. But… the time has come for a new challenge.
So, for my final ‘pearls of wisdom’ I leave you with the wise words of Dr Seuss ...
“Oh the wonderful way you’ll feel, you hear? If you just go out and volunteer …
A bird … a worm .. a guzzle-bivvit, Could all use some help if you’ll just give it;
You might say “No! Not! No Way!” “I’ve nothing to give—not today anyway!”
But you’ll see if you look deep inside of you, You’ve lots to give! It’s true! You do!
Leanne Conway, Outgoing Coordinator Volunteers
Travel reimbursement is offered to all volunteer roles
Volunteers needed in the following areas:
Bendigo, Bundoora, Campbellfield, Caulfield, East Melbourne, Elsternwick, Essendon, Noble Park, Seddon, 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).
Thought 2417 from John McGlade’s daily journal
About seven years ago I was diagnosed with a slow form of motor neurone disease (MND). For most people such a diagnosis would be horrific, but, true to form, I saw this as an opportunity to be free. To be free from domestic expectations like mowing lawns, fixing cars and carrying out the garbage. I saw this as an opportunity to focus on my real work, since a teenager, as a visual artist.
Over time my legs became weaker and I was often tripping over my own feet and gave up driving. Eventually I had to use an electric wheelchair, which was exciting, particularly on speed 5 (Only used on the freeway!).
However I did not expect what was next to come, I was slowly losing my speech and with that, laughing uncontrollably at basically everything. Most people, even doctors, would say, “What’s the problem? It’s better to be happy than crying at the slightest remark”.
But they didn’t understand the extreme inconvenience and inappropriateness of this tendency that lead to so many crossed wires with my family and friends not to mention shopkeepers! My speech was precarious enough but add to it my laughter at the slightest eye contact made it completely indecipherable to others, although I understood it perfectly well and marveled at their incompetent hearing or questionable intelligence. Trying to maintain decorum when responding to a serious matter from my partner with me grinning in her face. Trying to get words of calm out, caused no end of storming out of rooms. Crossed wires indeed, it was my forte when I spoke. For example, I would ask for “a slice of toast please” and my daughter would respond “Dad, why it so necessary for you go to Mexico and why now?” I would be incredulous at such responses and when I would protest I didn’t want to go to Mexico I would be reprimanded by “why didn’t say so, if all you wanted was the remote?”
My utterances were perfectly clear to me but obviously others were hearing them not as I understood them. This impasse was eventually solved by an iPad with a talking app. I now assumed I was finally out of the woods because iPads would have no wires; but there must be at least two wires in my iPad because it often, unprompted, would spontaneously blurt out, at full volume, something I said in all private confidence to my partner, of an explicit nature, the day before, despite copious erasing’s; once to an old lady getting her New Idea at the newsagent!
Such outbursts would be as much of surprise to me as the old ladies of the town who suddenly were presented with a totally new idea from my closed briefcase!! I then got a replacement, a smaller iPad I could fit into my pocket but this one talked too fast, for people to understand and I couldn’t alter the speed it spoke!!! I have, of late, turned to hand gestures with no wires attached.
As a published poet, loss of my speech is a double whammy because I can’t recite my own poetry at the monthly, local poetry meetings. However I have won the poets cup many times because of my actor friend, John, reading on my behalf (He also read my PhD presentation in 2015).
The habit of outsourcing has also extended to my painting and sculpture. Through the local men’s shed I have developed a friendship with Brian who does all my wood–work to my designs. Some of these constructions I then photograph and print out on A4 card and apply to the canvas because my fine hand skills are not what they used to be! I even designed a wheelchair friendly easel, which Brian duly made; no crossed wires with John and Brian!
Having just reached 10 years post diagnosis I wrote the below email to friends and family so this opportunity to "tell my story" came at just the right time. To put the email in context I was diagnosed with MND in June 2007 age 36, 2 weeks before I was due to fly out to Mongolia on holiday. First thought "[email protected], [email protected]!k, [email protected] ". Second thought " how will I end it when the time comes?". Third thought " ". Fourth thought " ". You get the drift?.
There have been many more thoughts since that time and most of them far more interesting. I have been fortunate in that my progression has been quite slow, so much so that following my diagnosis I was able to continue working as a clinical psychologist and living on my own for a further 7 years. I have had the luxury of time to adapt to the loss of abilities and the changes that MND has brought to my life. In terms of what I can and cannot do, at the moment I use a powered wheelchair for mobility but am able to self transfer to and from bed, toilet and lounge chair. My speech has deteriorated but is still intelligible which means that not only can I continue to talk with friends and family I can also use voice activated software to write emails, comments on Facebook and poetry. I have problems with the texture of some foods, however, for the most part, I continue to eat what I always have and have strangely discovered a taste for crumbed brains! I'm sure there's irony in there somewhere. I have tried a VPAP machine but found that it just didn't suit me and I still seem to sleep better without it. I no longer live on my own having moved to my parents' "little piece of paradise" 3 years ago, where we all rub along together quite nicely. All in all I'm doing relatively okay, am grateful that I have had more time than I know most people living with MND have, and plan on doing what I can for as long as I can. How long this will be and how I will feel when it comes to the process of dying I just don't know but what I do know is that I will have good, no great, people around me when it comes.
While I am living, however, I spend my days hanging out with sheep, chickens and cows, with lady bowlers and "senior friends" from View Club. Morning tea on the verandah with mum and dad and afternoon chats with my "shower ladies". Keeping up and catching up with family and friends. Massages and haircuts. The monthly newsletter for the bowling club and digital photo albums. Birdwatching (a duck just flew into the tree outside my window), lap-topping, reading and sometimes, sometimes just watching the world turn.
MND has taken some things away, wrought many changes but also given me much, including time to think about what "my life" is, how I choose to live and one day leave it and to remember all the 'yesterdays', live as mindfully as I can in the 'presents' and still look forward to the 'tomorrows'.
And that brings us quite neatly to the email below ...
Well people here we are; 10 years post diagnosis and despite the pretty crappy odds I'm still here so "YAY ME!". I'm not going to say that it's been a walk in the park, which actually would be quite nice right about now; because quite frankly MND sucks. Thought about mentioning the things I can no longer do just to be upfront and honest about what having MND means but, while challenging, they are only the back story not the whole story. There are obviously a whole lot of things I can no longer do, BUT, and it's a big but - and no, not that kind of big butt smart arse (you know who you are) - this life with MND has brought many things, with ironically, time being one of them. Time to sit and watch and think. About the nature of things and the meanings and mysteries hidden in them. About who I am and who I am not. About what defines me and what doesn't. About what I can live with and what at some point I may choose not to. About my own thoughts and where they come from and where, if anywhere, they might be leading me. I have had the time to follow my musings and ponderings and as a result have discovered much about hermaphroditic jellyfish, the history of birdsong in Australia, elements of the periodic table, how to get to an out-of-the-way restaurant on a cliff in South Africa, Darwin's origin of species and the beginnings of time. I have sat with Ratty on a river bank, spent time with a Swedish man called Ove, woven carpets with Afghan women, solved crimes with Sherlock, swum with otters in Scotland and gone back to Hogwarts for the 5th time.
I have discovered that being able to run and walk and dance, which I do miss and have grieved the loss of, never really did define me and that not being able to do them has not diminished me. I won't lie and say that I wouldn't be lined up with the best of them if there was a way to get these things back, but for me the things that matter most are the things that I can still do. The things that are joyful, that bring smiles and laughter and leave me with a sense of contentment. Thinking about what those things are they are mainly the "little things"; the feel of the sun on my skin, the winter chill in the air, the smell of smoke from the fire, identifying a new bird, the briny taste of oysters, watching a 3-year-old's passion and enthusiasm for life and the collection of moments that make up a life. And always, always people.
New people, old people and strange people. Let me explain. Let's start with "strange people"; these are those who, strangers at first, I've met on trains and buses - and at train stations and bus stops - in the supermarket, on the street, at work, in hospitals and all places in between. Some I met only in passing and never saw again, some became nodding acquaintances and others became "new people". New friends. Great friends. Even canine friends. To all these new friends, thank you, I hope you know who you are.
And "old people"? This motley crew includes all those people who were in my life pre-MND, are still in it now and have made it and me what it is and who I am. Childhood friends who have become much more hands-on in the friends department, always make me smile and laugh and despite their fears haven't broken me yet!! I have come to know more about you and you have become so much more dearer to me than I think you know.
Distant friends whom hearing from makes me smile and brings them closer. Neighbours who went above and beyond and at all hours of the day and night. Work-friends who became friend-friends and who never anticipated that making me breakfast, hitching up my trousers, wiping up my tears and being my own personal support group was in the job description. You made work a great place to be and are always in my thoughts. Friends who checked in on me, made me bacon sandwiches, chauffeured me hither & thither, picked me up when I fell down, stopped me falling, took me on adventures and shared their homes and families with me. Words are simply not enough to thank you for all you have done and continue to do.
And family, both near and far. Family who do what families do. With love and humour. With care and the patience of saints. Family who have allowed me to keep my "Lou-ness", the mix of things that make me, me. Even those bits that can be quite challenging. Yes, despite my serene and saintly appearance I can be stubborn, impatient, opinionated and a little bit stroppy. I have been known to spit the odd dummy, be a little too demanding and I still say stupid things sometimes. MND has not changed that but it has given me the time to reflect on these, to say sorry when I need to and to work on being better. MND does not give me a free pass on any of these things.
Finally mum, dad and little brother (making myself cry now). You have made me who I am, given me what I need to live this life, including a home I always knew I could come back to, and the freedom to live it on my terms. I love you all for all that you are and all that you do.
Along the way there have been tears of sadness, quite a bit of swearing and moments of frustration but there have been many more tears that come from others' care and kindness, tears of excitement and happiness and much, much laughter. I have literally rolled on the floor - and under a table - with laughter; a memory that always makes me smile and one which I shall carry with me until the end on my days. In fact I have also almost laughed myself off the toilet (thanks mum), off the lounge, into my car and to the point of not being able to breathe. Maybe I should just stop laughing? I think not. And on that note I shall bid you all a fond farewell for now and wish you a life well lived.
These legends have raised over $110,000!!
“Good day today. Very busy!! Just got back to the hotel. Visited Tiananmen Square, had lunch then spent a few hours in the Forbidden City. Such an amazing place! We did some tai chi which was very humorous ... went to a circus to see a show which was really cool. Had dinner and everyone is now ready to crash!”
The lack of coffee had affected half the group so we made the small walk to grab a Starbucks coffee to start the day ...
We then went to see The Temple of Heaven which is a nice big park with a huge temple as the centre piece. In the park is a large outdoor gym that is home to some incredibly fit and strong elderly locals... They certainly put all of us to shame!
Next stop was a visit to a local family's home where they taught us to cook dumplings. We were then treated to a lovely local feast for lunch which included our amateur looking dumplings!
From there we got onto a rickshaw and took a ride around a local village. It was certainly eye opening!
We then went and met a "cricket fighter". He told his story about the cricket fighting culture in China. These crickets are worth thousands of dollars and people bet on 2 crickets fighting each other... they are known to gamble cars and houses on these fights... We got to met his pride and joy nicknamed "Tyson" after Mike Tyson. It was one huge cricket!
He also showed us his turtles, lizards, rabbits, cockatoo's and other talking birds ... It was a very unique experience to say the least!
We then came back to the hotel where a few people went to find massages and the rest had pizza and fried chicken for dinner.
An early start awaits tomorrow as we start on The Great Wall!
This morning was an early start as we had a long morning in the bus ahead. We tackled Beijing's rush hour which was an experience in itself.
After about 3 and a half hours we arrived at a tomb site where we visited some incredible underground tombs. This one in particular was home to a Qing dynasty emperor.
Learning about the long history of China has been so fascinating for everyone!
We then went and had lunch. A couple in the group are already over the local cuisine so they got stuck into some Pizza Hut they kept from the night before...
Once we got back on the bus nearly everyone had a nap. After another hour and a half we were at an entrance to The Great Wall!
The views were instantly breathtaking and we climbed up and down some very steep restored parts of the wall. This was an incredible experience for everyone. We got to our finish point far quicker than anticipated so we decided to go on further. As the sun started setting we got off the wall and proceeded to our accommodation for the night.
Another Chinese banquet, a few beers and some story telling from each person in the group rounded out an unforgettable day!
"To start our second day on the wall we were greeted with toast, butter and jam along with some very strong Nescafé coffee. This may not sound that fantastic but for the whole group it was the greatest thing ever. There is only so much local cuisine you can eat...
After 2 hours on the bus we did a small warm up and stretch before heading up a huge incline to get onto the wall. This certainly kick-started the hearts!
From the moment we got on the wall we were all speechless. The scenery was unlike anything we'd imagined. The whole day was on thin, unstable and rocky ground with the odd very steep stair case. One quote was "these are not stairs, they are fences"!
So whilst everyone was taking in the surrounds they also had to be cautious with their footing. It made for very fun trekking conditions.
We stopped for lunch in an old watch tower. This was a good chance to refuel and get out of the very hot sun!
We continued on for another two and half hours before reaching the village we are now staying in.
A cold shower, a few well earned beers and a really nice banquet rounded out another amazing day.
An early night for some whilst others are learning the art of Chinese paper cutting from a local master!"
"Today was hot! We trekked a part of the wall that was quite touristy but very
We had a 2-2.5 hour steep uphill climb that really tested everyone's legs and heart rates. We posed for many photos along the way. We are becoming accustomed to the amazing views but they certainly don't get boring!
Once at the top, depending on who you are, it was either a daring and exhilarating descent or a cautious and safe trek down.
We finished the day a bit earlier than expected because everyone is awesome and pushes themselves.
We had lunch then a 2 hour bus trip to another hotel. Everyone is getting some well deserved naps on these lengthy trips!
We rested for a couple of hours before taking over a local pizza store. Fair to say we all took 'all you can eat' to another level!
An early night before we do it all again tomorrow!"
"So today was quite a laid back day. During the hour bus trip to the wall we were taught a bit more Chinese language, including how to say and write our names in Chinese!
We arrived at a very touristy part of the wall. It was very smoggy so the views were just about non existent! We walked up a very long and steep part that woke us up ...
Once that was done it was a nice cruisy stroll to finish our time on The Great Wall.
We got back on the bus, ate Subway and headed back to the hotel.
Most people rested for a few hours. A couple of us jumped on a bike and went for a ride to some local basketball courts where we joined in a pick up game.
We all went to dinner then most of the group kicked on at a roof top bar.
A small sleep in is planned before we head to the local markets tomorrow!"
"We had been told today was the best day of trekking and also the toughest. It sure didn't disappoint!
We started with a very testing uphill climb through the jungle. It started steep and just kept getting steeper... To make it that bit harder we were dealing with 95% humidity. It was very sweaty work!
Once we got to the wall we were greeted with some very broken parts and lots of overgrown trees and scrub. We had to really concentrate with every step.
Before we started the day we were told we were going to see the best views for the whole trip today. Unfortunately it was very hazy/smoggy so we couldn't see much below us!
After lunch we made our way to a famous part of restored wall. In the past it has been visited by The Queen and in more recent times Michelle and Barack Obama.
We walked down a part known as The Heavenly Ladders. It is 600 steps straight down from one watch tower to the next. It is famous for people racing up this section... For some of us that's an instant challenge so once we were at the bottom 3 of us 'raced' up the 600 steps. Completely and utterly exhausted is an understatement...
We kept trekking up and down the hills until we finally reached the toboggan ride. A 5 minute fast descent down the mountain in a toboggan was the perfect way to end a gruelling but very amazing day!
There was a great sense of accomplishment amongst the group this evening.
Another Chinese banquet followed by massages for half the group and an early night for the rest capped off a very memorable day."
These legends raised over $110,000!!
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
Support services for carers of people with MND
MND - The Community Responds - Bendigo
MND Victoria invites you to a seminar on Motor Neurone Disease (MND) for health and community professionals.
9am – 4pm, Friday 17 November 2017
All Seasons Hotel, Fernery Room, 171-183 McIvor Rd, Bendigo, Victoria 3550
Featuring a keynote presentation by: Dr Caron Chapman, Consultant Neurologist
‘Motor Neurone Disease: phenotypes, progression, treatment and management’
The program includes a series of presentations by a range of MND specialists, question time, panel discussion and interactive workshops.
More details will be released in the near future.
To find out more and to book visit:
PO Box 23, Canterbury 3126
Tel: (03) 9830 2122
Freecall 1800 806 63
Fax: (03) 9830 2228
BREATH STACKING STUDY
By Dr Graeme Bertuch OAM
Recently, people who have a neurodegenerative disease have been invited to participate in a research project called “Lung Volume Recruitment [LVR] in Neuromuscular Disease” being run by Austin Health. Diseases such as Duchenne Muscular Dystrophy, spinal cord injury, and Motor Neurone Disease are covered by this category. Some of our readers may have been approached to participate. The aim of the study is to find out if LVR or “breath stacking” as a type of deep breathing exercise improves how well people can breath and cough. Difficulty taking deep breaths and coughing are two common complications for people with neuromuscular disease, leading to shallow breathing leading and to stiffness in the lungs and ribcage. LVR, or breath stacking, is a simple and inexpensive therapy that may help overcome stiffness, loss of lung volume and reduce the chance of respiratory infections. A type of resuscitation bag is used to help get and hold maximum amount of air into the lungs before exhaling. This is then repeated as a deep breathing exercise. The trial is to see if strength of cough and lung volumes can be improved over a period of time.
Reports from the Dublin Conference from 2016 [2 studies] found “positive physical benefits and an unanticipated psychological benefit” and an “increase in voice volume and a help in expectoration of lung secretions”. MND/ALS is a diverse disease with different progression rates. So will breath stacking be universally helpful? It may well be early in acute onset ALS and more chronic forms such as flail limb and upper motor neurone variants, but later in the disease process with limited upper limb mobility and weakened chest and abdominal muscles probably not. We will await the outcome of this interesting trial.
For this edition of our investigative and social welfare magazine MND News we have exclusive rights to a BLOG on the MND crime scene from MND Research. This article looks at exposing the crime wave that has killed Mr Motor Neuron and his immediate family and support staff.
In Australia it seems that there exist branches of the crime syndicates responsible for these horrific crimes. Extensive investigations have unearthed fragments of genetic evidence and have also implicated toxic proteins packages in the demise of the Motor Neuron family. Accumulation of TDP and FUS proteins in their bodies poisoned the Motor Neuron family leading to an early demise.
The jury is still out on the cause of this pathologic protein appearance. Are there tight jeans involved or are there other causes? In the case of Mr Chamorro from Guam, a toxic environmental poison, BMAA, was fed to him leading to an early death. He had no known genetic identifiers. Using a Translational Symmetry approach, does a similar process occur in the Motor Neuron family demise?
Are toxic packages of amino acids and peptides delivered from the dark underbelly of the BlOME? This is speculative but deserves investigation. The biome has been implicated in other crimes such as inflammatory bowel diseases, Parkinson's Disease and autoimmune disorders. Tackling the criminal groups in the large bowel hideout has eradicated the difficult Clostridium Gang.
Extensive research into antidotes for these poisons are occurring but to date little of significance can be offered to the Motor Neuron family.
Now onto our exclusive report from Investigating Officer Sarah Thompson writing the Blog for MND Research.
Motor Neuron murder mystery: who killed Mr Motor Neuron?
By Sarah Thompson, MND Association UK
First published in mndresearch.wordpress.com
This blog is a fabricated story inspired by the current knowledge of MND.
Today, we wake to news that Mr Motor Neuron (one of the brightest stars in Hollywood) has been killed. A very specialised actor, he was well known for his lightning fast reactions and action-packed roles, often playing characters that had very important messages to deliver.
The alarm was first raised at 2am, when Neuron was found dead in the kitchen of his house by the cleaner, Miss Phagocyte. Dr Riluzole was called and attempted CPR, but nothing could be done to revive him. Early speculation is that he may have been poisoned with a highly toxic protein substance. Neuron’s bodyguards (hired from the prestigious company MicroGlia) have also gone missing, leading many to believe that they too have been murdered.
Ms Glial, who was Neuron’s PA since his career started, was thought to be at the property last night. However, despite being seen after 2am this morning, she is currently nowhere to be found and is being actively sought for questioning by the police.
Possible witnesses are currently being sought; it’s believed that his neighbour, Mr Calcyclin, was walking his P.75 breed of dog and may have vital information which he is giving to police at the Chaperone police station.
Rumours had been circulating that Mr O2 (Neuron’s agent) had put a lot of pressure on Neuron to complete the filming for his latest movie, and that the resulting stress may have contributed to his murder.
Some of Neuron’s family members are considered dangerous, especially his nephews C9orf72 and ATXN2 who are both members of the notorious ‘repeat expansion’ gang. He also has family connections to the FUS, SOD and TDP cartels (whose recent changes to the lucrative jean manufacturing industry had caused friction in the exclusive ‘Cellular Hills’ community).
Despite Neuron’s many film successes in recent years, one passer-by we spoke to earlier commented that Neuron’s home had been in decay for some time. He described plaster falling from the walls, cracked windows and an overgrown garden. However, the responsibility for this decay is disputed by the owners of the management company, hired to look after the estate, Mrs Ciga Rette, Mr Electro Field and Mr Pesti Cide. They point to other estates they manage showing no signs of decay and no one being murdered. They are currently unavailable for further comment.
Thousands more police (from many countries) are being drafted in to help with the investigation (operational code name: International Symposium on ALS/MND), which has become an international collaboration in an effort to find the murderers. One division of investigators is called the Project MinE task force, currently looking into the months preceding Neuron’s death.
A reconstruction of events will be filmed this afternoon and shown tonight on Crime LA. It will feature the award winning ‘iPSC’ theatre group reenacting the hours before the tragic murder, in the hope that it will bring new information to light.
Despite a number of theories and mounting evidence, it remains unclear who killed Motor Neuron and how.
Have you experienced medical issues or other difficulties in seeking care on your return from medical travel?
If so, we would like to hear from you.
Research project: What, if any, difficulties are faced by medical travellers upon their return home?
We are currently seeking research participants who can participate in our study. This is an international collaborative research project, focusing on Australia and Japan, that explores how patients who travel abroad for medical care may be better supported upon their return home. Monash University is taking part in conducting research in Australian contexts.
As medical tourism has grown around the world, so have the number of the reports highlighting the adverse outcomes from undertaking medical care abroad. Health and safety risks associated with medical tourism have become a major concern to researchers, medical professionals and policy makers worldwide. Due to a scarcity of empirical research on medical tourism, your participation is invaluable in highlighting what patients have experienced following travel to another country or jurisdiction.
Should you have any inquiry into our study, please contact us:
Chief Investigator: Professor Alan Petersen
School of Social Sciences, Faculty of Arts,
Second Chief Investigator: Dr Maho Omori
School of Social Sciences, Faculty of Arts
Every day I am reminded how families impacted by MND want to do whatever they can to help raise awareness and funds so that other families can continue to access the care and support services MND Victoria has been providing for 36 years.
In the last MND News I highlighted some of the comments from families who had used our services so that they could continue to live as independently as possible for as long as possible. Today I’d like to highlight and thank every one of you who makes it possible for us to continue delivering care and support to over 400 Victorians living with this disease every day.
For those who have been receiving our MND News for several years, you will be aware that we will soon hold our annual Walk to D’Feet MND at Princes Park, Carlton. This is our major fundraising activity of the year and we are planning for it to be bigger and better this year. We will have Razor the Raptor from Real Dinosaurs there to entertain the children and start the Walk (https://www.facebook.com/RealDinosaursAustralia).
There will also be Cinder the Clown, face painting, sausages, coffee and lots of MND merchandise.
Our goal for the Carlton walk is to have 2,500 participants all wearing their Walk to D’feet MND t-shirts surrounding Princes Park and very importantly to raise at least $200,000 for care, support and research. We can only do that with your help. So now is the time to register, set up your team and start fundraising.
Are you going to attend the Celebration of Champions? This year we want to celebrate our Walk to D’feet fundraising heroes at a “Thank you” celebration in April 2018, time and venue to be confirmed. The Celebration of Champions will be open to anyone who raises $2,000 at any of our Walks – Lakes Entrance, Rosebud, Carlton, Bendigo or Geelong. Everyone who raises $2,000 will be invited. For families and teams one invitation will be provided for every $2,000 raised. This will be a great opportunity to meet with other heroes and share your fundraising stories and more. So please help us to reach this goal for all those impacted by MND yesterday, today and tomorrow.
P.S. Please read earlier on in this online newsletter about the awesome China Walk to D’Feet MND team who have recently returned from their Great Wall of China Trek if you haven't already done so. At the time of writing these ten individuals have raised $110,000. You can also read about next year’s adventure walk – the iconic Kokoda Trail.
So thank you very much for your amazing fundraising. Can I please encourage you to continue supporting MND Victoria this year because Until there’s a cure ... there’s care.
Kathy Nightingale, Manager Fundraising
Around the State
On 6 September we teamed up with Dr Brad Turner from The Florey Institute of Neuroscience and Mental Health to present an MND information session to Uni High students. Brad’s presentation made such an impact that the students continued discussing MND for the rest of the day!
Ashley’s BIG shave for MND
By Donna Greenhill
My father (Ashley’s Pop) Bernie Cook was a builder who lived in Walwa for most of his life. He and his wife Carolyn had a plan for their retirement and so about 6 years ago they bought a very dilapidated house in a lovely part of Wangaratta and proceeded to renovate. At the beginning they would travel to Wangaratta each weekend to begin the long arduous task of demolishing and rebuilding. This went on for a couple of years until Bernie decided it was time to fully retire from building and concentrate his efforts on their own home. They sold their house in Walwa and settled into a now half completed house in Wangaratta.
By early 2016 Dad had put all of the finishing touches to the house that he was the most proud of and began settling into retirement life, visiting his children (2 sons and 1 daughter, 7 Grandchildren) in Walwa and Melbourne and relaxing in his new home. Around September 2016 I began noticing a bit of a change in Dad’s speech. I spoke to Dad every Sunday on the phone, it was becoming slurred and I was concerned that he may have suffered a slight stroke, voicing my concerns to Mum who was not overly bothered because she had not really noticed a change (we put this down to her living with him every day). My brother who was very close to Dad was also becoming very concerned.
By early November Mum and Dad were beginning to worry. Dad’s use of his arms was becoming limited, he was having trouble lifting his arms to shoulder height and battling to get a fork full of food to his mouth. He also stopped talking to me on the phone, letting Mum do the talking (this was rare).
At this stage Dad began going to his doctor trying to find out what was going on. She sent him for tests for a stroke, no stroke. He went back the following week, blood tests for something else, all negative. Over the course of these couple of weeks Dad was deteriorating at a rapid pace.
On 28th November Dad visited his GP one final time. She was shocked at his deterioration and sent him straight to outpatients at Wangaratta hospital.
That afternoon my brothers and I received a call from Mum saying Dad had been admitted to hospital and the doctor seemed to be confident that Dad had MND but was unable to diagnose.
We then had the wait for an appointment with a Neurologist in Albury which was not until Dec 5th.
That appointment confirmed our worst fears and he gave Dad a time frame of 2 months. Dad passed away the following Wednesday Dec 14th, aged 72 years.
Ashley, being the eldest grandchild and very close to his Pop, took this very hard so after having being hassled for months about how scruffy his hair was, Ashley decided that he would shave it and raise funds to help find a cure for the disease that took his beloved Pop. He started up a My Cause page and set the date for July 1, to be held at the Border Walwa Football Netball clubrooms after a home game. The response from Ashley’s, family, friends and the local community donating to his Facebook page was amazing, that reached almost $3,000 and also on the night raised more than $2,000 being from a tin Ash had passed around, proceeds from the after game meal on the night and people throwing in money to do the shave.
His football mates all rallied together and put in $600 to shave his chest and eyebrows as well so they came off as well.
Ashley and his family would like to take this opportunity to thank everyone that donated and also that made it to the night at Border Walwa Football grounds to show support. A special mention to the Border Walwa Comittee and members and Federals Football Club for sticking around and showing support that night. The support that came from such a small knit community was amazing and we can't thank each and every person enough for their donations.
The final tally reached a total of $5,135, more than Ash's original goal. [Family photo below]
Walk To D'Feet MND
Christmas Cards 2017
Microsoft is building eye tracking tech into Windows 10
Microsoft is building eyetracking tech into Windows 10 Microsoft is introducing a new accessibility feature that allows users to control their PC's with just their eyes. Using third party hardware like the Tobii Eye Tracker 4C, you will be able to navigate your Windows 10 PC with just your eyes, including the ability to manipulate windows, type out sentences and more.
"Borne out of a Microsoft hackathon challenge inspired by former NFL player Steve Gleason, who suffers from ALS (amyotrophic lateral sclerosis), Eye Control enables disabled users with compatible eye tracker devices to operate Windows 10 PCs through gaze alone. "
I have been diagnosed with MND for nearly five years. In that time my feet have become of such a shape that ordinary shoes will just not do. Ha ha, I thought, here's a chance to do some useful internet shopping as opposed to the frivolous shopping I normally do.
I tried the local stores and the slippers they sell will not accommodate my feet - let's just say I'm not a candidate for trying on Cinderella’s slipper. I tried Australian internet sites which do have some clothing for people who have challenges with dressing but lets face it they're a bit depressing. I'm not a mauve or brown girl.
So I came across a site in Canada which caters for people with a range of health problems. You are able to search by your disease or your actual problem for instance wheelchair bound. I found some slippers which are so comfortable and warm, are very easy to fit due to 3 multi adjustable velcro flaps that secure across the top of the foot (my feet have been toasty all winter).
I also have a lined cape which has allowed me to venture out in Ballarat all winter. I like to think I look like a superhero without the underpants on the outside. Ughhh.
Anyway, I managed to get my cape and shoes and pay the postage for under $200. Postage is $60 American dollars and there are always sales. You are able to buy clever trousers which you can put on in your wheelchair. Also back fastening tops.
I hope this is helpful to some of you who are experiencing difficulties finding appropriate clothing. The web address is www.silverts.com. Good luck shopping.
- Marion McCabe
Saturday 11 November, University of Sydney
Donations were made in memory of
Research in Memory
Estate of the Late Dorothy Jean Mahler
Estate of the Late Violet Minnie Meddicks
Estate of Late Norma Shirley Estella
Estate of the late Dudley Barton Adams
Trust and Foundation Donation
Joe White Bequest
Support Group Donations
Ballarat Branch Sportsmen’s Association
Luib Club of Wonthaggi Inc
Lodge of Eyclid
The Country Women’s Association
Royal South Yarra Lawn Tennis Club
St Francis Xavier Parish
Rotary Club of Grovedale
Rotary Club of Prahran
Edgewise Insurance Brokers
Lorraine Lea Linen
Blue Illusion Australia P/L
MND Victoria members are invited to contribute personal stories, anecdotes, letters, or ‘Handy Hints’ to the newsletter. We cannot guarantee that all contributions will be published as this is dependent on available space, but every effort will be made to do so.
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
Coordinator Operations: Alia Turnidge
Coordinator Equipment Service: David Harkin
Equipment Officers: Kathy Walker
Coordinator Volunteer Programs: Vacant
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