Matters - Cape to Cape Grief Walk to D'Feet MND MND Week 2-8 May 2021 - www.mndawa.asn.au
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mndmatters
Volume 10 Issue 1 January - March 2021
Cape to Cape
Grief
Walk to D’Feet MND
MND Week 2-8 May 2021
www.mndawa.asn.au
Inside This Issue
Volume 10 Issue 1 January - March 2021
Note from the Executive Officer................................................................................................. 1
Note from the President............................................................................................................ 2-3
Welcome Dr Dev Nathani & Staff.............................................................................................. 4-5
Clients & Carers Satisfaction Survey........................................................................................ 5
Advisor Corner.......................................................................................................................... 6-7
VAD Implementation................................................................................................................. 8-9
Sophie’s Soapbox..................................................................................................................... 10-11
Sarah’s Fundraising Files.......................................................................................................... 12
Let’ Get Quizzical For MND ..................................................................................................... 13
Walk to D’Feet MND................................................................................................................. 14-15
Dive For Dollars........................................................................................................................ 16-17
Fundraising in the Community................................................................................................... 18
Walk to D’Feet MND Poster....................................................................................................... 19 Note from the
Cape to Cape For MND ...........................................................................................................
Grief is the price we pay for love..............................................................................................
Bereavement Support Group...................................................................................................
20-21
22
23
Executive Officer
Carer Toolkit............................................................................................................................. 24 Dear Members and Friends,
A Great Place to Stay............................................................................................................... 24
Carers Lunches........................................................................................................................ 25 It has been a busy three months since
Grazie Gift Hampers................................................................................................................. 26 Christmas.
Pamper Day.............................................................................................................................. 27
Thermomix Raffle..................................................................................................................... 27 We have all settled well into our new Carlisle
A Trip Down Memory Lane....................................................................................................... 28 premises and enjoying the extra space. We
ECO Early Learning.................................................................................................................. 29 have recently added video conferencing facilities
Condolences............................................................................................................................. 30 to the boardroom thanks to a successful grant
In Memory................................................................................................................................. 31 application from Lotterywest.
Support MNDAWA.................................................................................................................... 32
MNDAWA Events Calender...................................................................................................... 33 We have also purchased two telehealth units
Support Us With Your Donation................................................................................................ 34 due to the Lotterywest grant and installed them
into our two small offices. The office is open We have added a fourth Advisor to the team in
plan so this will allow staff to have video calls Perth.
with clients and carers in a quiet environment.
Motor Neurone Disease Association Board of Management
President: Prof Samar Aoun
of Western Australia Vice-President: Dr Rob Edis We have added two new staff members this
A South West Regional Advisor based in
Bunbury.
Treasurer: Helen Kraus year.
Unit 1/184 Raleigh Street Secretary: Hannah Ley
Carlisle WA 6101 An NDIS Coordinator of Support.
Member: Drew Bathgate Andy Jones joined the team as our Warehouse
Member: Maureen Bathgate Manager and has been very busy and An Occupational Therapist.
Phone: (08) 6186 4133 Member: Lachlan Haughey productive organising our equipment.
Member: Evan Battalis Added a grief counselling service.
Email: admin@mndawa.asn.au Member: Dennis Bertoldo Vivienne Travlos has very recently joined the
Member: Dr Loren Flynn team. Vivienne is an experienced Respiratory At the end of March, the board and I will be
Member: Melissa Cashman Physiotherapist and will be working 20 hours workshopping our strategic plan. Improving the
a week. Her skills will be a great asset to our life of our clients is at the heart of everything we
clients. I would like to thank the McCusker do and I look forward to making that happen.
Staff Ambassador foundation for funding this position.
Exective Officer: Andrew Hirst Kirsten Whitby
Accountant: Ling Lee Until there is a cure, there is care.
When I started with MNDAWA in January 2018
Fundraising & Events Manager: Sarah Wiley
MND Advisors: Joan Ellis, Leanne Bodley, Bree Martin, Honorary Positions we had 162 clients and today we have 197.
Hon. Solicitor:
Abi Crisp & Emma Evans (SW) A lot has happened in that time. Some highlights Andrew Hirst
Mr Peter Murray
Accounts Receivable & Administration Officer: Wendy Jones are: Executive Officer
Hon. Accountant:
Coordinator of Support: Jodie Nicks Mr Tony Silipo
Occupational Therapist: Sophie Nunn
Education & Support Group Coordinator: Anne Northall
Receptionist: Lauren Kraus Patrons
Warehouse Manager: Andy Jones Narelda Jacobs
Respiratory Physiotherapist: Vivienne Travlos Keith Potger, AO
Kim Hughes MND MATTERS Volume 10 Issue 1 - 1
MNDAWA hosted a successful Advance Grief for affected families by MND starts
Care Planning (ACP) workshop, called from the time the diagnosis is received. I
Plan Ahead, delivered by Palliative Care was pleased to know that many families
Western Australia. Over seventy people have already taken the opportunity to seek
attended, approximately half being MND the assistance of our grief counsellor,
families and half health professionals Leanne O’Shea. Our free grief counselling
including our MND Advisors. Topics sessions are making a difference and
discussed were “what matters most to you developing a compassionate approach to
in life; what treatments do you or don’t you the care of our families. Change and the
want at the end of life; and who will make accompanying experience of loss is part
decisions when you can’t”. All attendees of everyday life. These changes can come
said that they would recommend the with grief and a feeling of sadness and MNDAWA team attending the ACP
workshop to family and friends. The often have a major effect on our personal
proportions feeling confident/very wellbeing. I encourage the importance the issues we faced. It also enabled the
confident in completing the advance care of reaching out for support, we are here Advisor to highlight to [patient] so that he/
planning documents that are important for you in your time of grief and loss. The she got a better idea of how I was feeling
to them, rose from 18.8% before the strengths of the Association are in the and what I was going through. If we had
workshop to 67.4% after the workshop: compassionate support, connections and had this earlier, it might have stopped us
“I wasn’t very aware of advanced care understanding that come from the shared getting to the point we got to”. I refer you
planning, so I have found this workshop experience of MND. Bereavement support to the write up on the family carer support
very informative and will make a start and groups are planned to start in June and information online toolkit in this
talk to my family about end of life wishes”; this year, please see the details in this newsletter.
“Changes way of thinking - empowerment newsletter. I also refer you to the helpful
- assessing values now & in future”; write-up that our grief counsellor has I would like to attract your attention to
“Information on what is out there to help prepared on this topic for this newsletter. complete the annual satisfaction survey
with making decisions”. which will be sent out by post in June this
After a year of trial with regular training year and will also be available to complete
The implementation of Voluntary Assisted and professional development of Advisors, on-line. It is important that we know from
Dying (VAD) will be in place in Western the family carers’ support initiative, that both people with MND and their family
Australia in July this year. MNDAWA regularly assesses and addresses the carers, your experiences and your opinion
staff and Board members have sought support needs of family carers, is now of what needs to be improved. As you
to become more informed so they can embedded in the routine practice of have seen, the Association has taken into
help inform the MND community if, MNDAWA. Following interviews seeking consideration your previous suggestions
and when asked questions about the the feedback of family carers about their and increased the range of support
topic. Dr Rob Edis has kindly provided experience, positive views and already felt services and equipment, mainly funded by
a concise and informative summary benefits were expressed such as: “This philanthropic organisations for whom we
Note from the following an information session by the process really hit the mark in helping me are grateful.
health department, that you can read in address my needs and clarify actions”; “I
President this newsletter with helpful references to
websites for more details.
think it’s a brilliant idea. It is something that
should be repeated regularly and would
have helped alleviate (or prevent) some of
Finally, I would like to acknowledge
the hard work and skills of all who
provide care (MND Advisors- Abi, Bree,
However, one important note of difference Leanne, Joan and Emma; OT- Sophie,
Dear MND Community, to keep in mind here is that Voluntary NDIS Coordinator of Support - Jodie,
Assisted Dying is not part of palliative care and Respiratory Physiotherapist -
MNDAWA has certainly hit the ground practice which is defined as: “Palliative Vivienne) and other services within the
running in 2021. The team has settled well care affirms life, and regards dying as a Association (including Executive Officer
in the new premises of the Association normal process that intends neither to Andrew, Manager of Fundraising and
after the move late last year. It is of great hasten nor postpone death. It improves the Events Sarah, Education and Support
benefit for smooth operations to have the quality of life of patients and their families Group Coordinator Anne, Accountant
warehouse of equipment located on the facing the problem associated with life Ling, Warehouse Manager Andy, and
same premises which was never the case threatening illness, through the prevention Administrative Staff Wendy and Lauren).
before. The staff additions to the team in and relief of suffering by means of early I sincerely thank our staff, Volunteers and
terms of OT, NDIS Coordinator of Support, identification and impeccable assessment Board Members for their commitment and
a Regional Advisor based in the South and treatment of pain and other problems, compassion and the common vision to
West and more recently a Respiratory physical, psychosocial and spiritual”. work together as one team to drive forward
Physiotherapist have bolstered the There will be an opportunity to expand on a better quality of life for families affected
capacity of the Association to expand this topic in a future newsletter.
by MND.
these much-needed services to the MND
community. Palliative Care WA facilitators, Lana & Sabena, Prof Samar Aoun
Drew Bathgate, Maureen Bathgate & MNDAWA
President Prof Samar Aoun at the ACP workshop President MNDAWA
2 - MND MATTERS Volume 10 Issue 1 MND MATTERS Volume 10 Issue 1 - 3
Welcome Vivienne Travlos
Respiratory Physiotherapist
Dr Dev Nathani
Wow! What a wonderful start to being a part of the committed
MNDAWA team. My interest lies in helping individuals and their
families living with rare and rapidly changing neuromuscular
Dr Dev Nathani has joined the Perron diseases (NMDs) navigate daily life as ‘normally’ as possible,
Institute and Sir Charles Gairdner Hospital however that may take shape in each home. When mechanical
multidisciplinary motor neurone disease airway clearance devices such as the Cough Assist® first found
clinic. He has relocated from Canberra to their way into home care in the mid-2000’s, families living with
replace Dr Rob Edis who retired from the NMDs prompted me to find out more about many different
clinic at the end of last year. respiratory supports. My clinical, research and teaching work
has given me the privilege of learning from and with families how
Dr Nathani completed his medical degree the healthcare team may be able to help, what may be most
at the University of New South Wales in important and useful. My recently completed PhD explored the
2011. He went on to complete his Master of perceptions of young people with NMDs around uptake of life-
Philosophy (Medicine) at the University of extending ventilation. I look forward to sharing insights gained
Sydney in 2019, evaluating the role of nerve with the extended family of individuals navigating MND.
biopsy in modern neurodiagnostics.
You may be able to tell from my nautical terms that my family
“I’ve always found the discipline of Neurology enjoys sailing. Since COVID-19 has separated us from our
to be absolutely fascinating and had made “During my studies I became familiar with the family in southern Africa, one dream is to sail across with my
up my mind as a 14 year old that this was excellent work being conducted at the Perron better half and two daughters. For now, though, our daughters’
the way I wanted to serve the community,” Dr Institute and in Western Australia in general. musical, creative and early high school endeavours keep us
Nathani said. I am honoured to work with such esteemed out of mischief. I very much look forward shaping my role with
clinicians and researchers. MDAWA.
“During my training as a Neurologist, I spent
two years as a research fellow at the Brain “In the short time I’ve been here, Perth
and Mind Centre in Sydney where one of my seems a wonderful place to live and work.
supervisors was Professor Matthew Kiernan, My partner and I have already fallen in love
one of the world’s leading experts in MND. with the city and its people.”
“While there, I was involved in the MND
clinic and saw the immense value of having In his spare time, Dr Nathani enjoys trekking,
a multidisciplinary care model for the and for a couple of years he was a volunteer
management of MND patients. guide for Emu Trekkers in NSW. He is
especially looking forward to exploring WA’s Tell us what’s working or not working for you!
“I feel privileged to have the opportunity to famous national parks.
care for MND patients as part of the team at
the Perron Institute. Welcome, Dr Nathani! Motor Neurone Disease Clients & Carers Satisfaction Survey
MNDAWA’s annual satisfaction survey will be sent out in June this year. This will be posted in the mail and
will be available to complete online.
Andy Jones
Warehouse Manager It is important that we know from both people with MND and their family carers, your experiences and
your opinion of what needs to be improved by the Motor Neurone Disease Association of WA. Your
I joined MNDAWA in December 2020 after the recent move to feedback will assist the association in improving the services offered to you and other people with MND.
our new premises in Carlisle, it soon became apparent that I was
not just an employee but part of the MND family, everybody was The Association has taken into consideration your previous suggestions and increased the range of
so welcoming and helpful. support services and equipment. But if you do not tell us, we will not know what is working
(or not working) well for you.
In my role as warehouse manager, I am responsible for general
warehouse duties and equipment. We invite you to complete the surveys, one for the person with MND and one for the family carer. It is a
To obtain equipment please visit our website and complete the short survey and your contribution will be valuable. So please keep an eye on it early June.
online equipment request form.
4 - MND MATTERS Volume 10 Issue 1 MND MATTERS Volume 10 Issue 1 - 5
Advisor Corner:
Newly Diagnosed In times of stress your emotional well-being
is important. Distraction techniques can shift
your thinking, if for no other reason than
to balance the connection between mind
and body. Focusing on one thing at a time
may assist in calming your overwhelming
The impact on you at this significant time thoughts. Looking at what you are able to
of being newly diagnosed, can be all do in this moment of now, might be helpful
consuming. Speaking with our MND clients to maintain what you can control. Be kind to
and family members, has given us an insight yourself through this journey of
into some of the thoughts that can run havoc self-awareness.
in your mind. Shock and denial can come
hand in hand as your emotions travel a Your wish for privacy and independence are
rollercoaster ride. Some questions may be acknowledged with respect throughout our
keeping you awake at night. When is the interactions. Please do not be concerned that
right time to share information with family we enter your home to dictate to you. The
and friends? What is ahead of me and for my knowledge we impart to you will empower
family? How will I cope? Why me? you to make informed decisions.
If you are someone recently diagnosed with There is no right or wrong way for anyone
MND, this article may be of particular interest You will be invited to MND functions
to respond to this illness. Everyone will throughout the year. Understandably you
to you. For others who are familiar with our have their own personality traits and life
services and newsletter, perhaps a time of may be cautious about meeting other MND
experiences that will affect how you adjust clients. Let me clarify for you that our events
reflection. to this new situation. As MND advisors Carers Lunch Bunbury
are not dismal. There is much humour and
we will be alongside you to discuss your beneficial engagement for you and your
The MND association is in existence for the concerns and fears. In conjunction with
purpose of improving care and support to family at these events.
this, is supporting your immediate person
you, your carer and family members. You are in the home, being the spouse or partner.
not alone in this experience of MND. From the advisors team Joan, Leanne,
We extend our support to your loved Bree, Abi and Emma we send you all our
ones, understanding that they too will be There are three MND clinics in Perth. warmest regards.
I take this opportunity to explain to you the experiencing a level of anxiety. If living alone, One based in Nedlands called the Perron
role of the MND advisors, who with your we can work together to implement a plan clinic another at Fiona Stanley hospital
permission, will visit you in your home. that is in line with your views. and the third at Midland hospital. You
will have appointments with your MND
There are four advisors in the Carlisle office How much time is needed to process the neurologist specialist and be introduced to
and one located in Bunbury. We will support diagnosis is at your discretion. Sharing a team of health professionals within these
you individually for continuity of care, in the information with others may lighten the establishments. Advisors will continue with
addition to team support, if your advisor is burden. It is with admiration we witness education on MND and guide you at a pace
out of the office. We facilitate communication the resilience of people with MND, living that fits in line with your circumstances. It
processes to the best of our ability to their daily lives through the landscape is not unusual for us to hear the comment
advocate on your behalf. MND advisors of challenges. There is no yardstick for “we don’t know what to expect” We will
navigate the labyrinth of health services comparison to others to measure yourself endeavour to answer your questions with
that you will be introduced to through our by in this regard. You can only manage with empathy and clarity, to assist you in these
referrals. what is within your capacity to do so. times of uncertainty.
For people under the age of 65 years you
will be introduced to the National Disability
Insurance Scheme (NDIS) for people
over the age of 65 years, the Age Care
Assessment Team (ACAT) will be the model
of referral, both systems implemented for
community services.
Pamper Day
Christmas Lunch MND MATTERS Volume 10 Issue 1 - 7
6 - MND MATTERS Volume 10 Issue 1
Information on the Implementation of
Voluntary Assisted Dying in WA
Eligibility Criteria
To be eligible for voluntary assisted dying,
the person must meet all of the eligibility
criteria. Further Steps in the VAD Process Key points to remember
This includes that they: If found eligible for VAD, there will initially be (1) To access VAD, the person must undergo
3 “Nurse Navigators” (based at Fiona Stanley eligibility assessments by 2 independent
• are aged 18 years or over Hospital) to whom patients can be referred medical practitioners, most likely general
for further guidance, and for help in locating practitioners but may be specialists, (called
• are an Australian citizen or permanent a medical practitioner who has completed the the coordinating practitioner and the
resident who has been ordinarily resident in mandatory VAD training module and who can consulting practitioner). Nurse Navigators
Western Australia for at least 12 months then opt to be the “coordinating practitioner” can help in contacting eligible and accredited
to whom the First Request for VAD must be doctors. However, doctors and other health
• have been diagnosed with at least 1 made. practitioners have a right to conscientiously
disease, illness or medical condition that is object to participation in VAD.
advanced, progressive and will cause death; An independent second “consulting
Dr Robert Edis (Neurologist) and, will, on the balance of probabilities practitioner” will then be engaged and will (2) The MND Clinic neurologists are available
Vice-President MNDAWA cause death within a period of 6 months (or confirm eligibility and that the VAD request is for their advice if requested by patients or
12 months for neurodegenerative); and, is both voluntary and competent. the coordinating medical practitioner or
Voluntary assisted dying (VAD) is the term causing suffering that cannot be relieved in a nurse practitioner. MNDAWA advisors can
that has evolved in Australia in recent years manner that the person considers tolerable Either one or both of these Drs may then be give information but the discussion must be
to refer to the legislated assistance provided the “administering practitioner” of the VAD initiated by the patient.
by a health practitioner to an eligible person • must have decision-making capacity in substance causing death (this may also be
with a terminal illness and intolerable relation to voluntary assisted dying a Nurse Practitioner, particularly in a rural (3) The 10 basic steps in the VAD process
suffering to end their life through access to setting). are outlined in an Information sheet on-line
specified medication. “Voluntary” indicates • must be acting voluntarily and without from the Health Department (“Overview of
that it is the person’s voluntary choice, and coercion After a third request for VAD is received; the process” at
that he or she is competent (has capacity) to a prescription will be made for either the www.health.wa.gov.au/voluntaryassisteddying)
decide access to VAD. • must have an enduring request for access oral medication to be obtained from the
to voluntary assisted dying single Statewide Pharmacy site to be taken (4) There are strict safeguards that apply
With the VAD implementation starting in July by the patient orally; or the administering to the VAD process, including information
2021 in WA, The MNDAWA Board members, Discussing VAD in relation to MND and Dr will obtain the Intravenous medication, requirements, oversight and supervision,
Advisors, general staff and neurologists assessing eligibility depending on the choice of the patient. mandatory reporting and requirements
attended a briefing and Q&A session by WA regarding prescription, disposal and safe
Health on March 10th so they can better By the WA VAD Law, only medical and nurse The place of death will be mostly in the storage of VAD medication.
inform the MND community. Good planning practitioners are permitted to bring up and person’s home with the support from their
progress has been made by the Health discuss VAD with patients; but the MNDAWA family; otherwise, it can be in a participating (5) These requirements are quite onerous
Department with Information Sheets on every Advisors are also permitted to discuss VAD if hospital, hospice, or nursing home (RACF). on the participating Drs and Nurse
aspect of the process now available the patient raises the subject first. However, However, some services will not participate Practitioners with no medical practitioner
on-line for interested patients and families everyone will be informed about their in VAD if it does not align with the purpose or funding assistance model yet in place. (costs
and health professionals palliative care options. values of the service (but it is anticipated that may have to be borne by the patient). The
www.health.wa.gov.au/voluntaryassisteddying they will continue their care in tandem with mandatory on-line VAD practitioner Training
The MND Clinic neurologists will have the independent VAD practitioners). Module will be available in June 2021 for
This article summarises some key points. a role if requested, in giving an opinion interested medical practitioners.
on eligibility to VAD (including through There is no reference to VAD on the person’s
Telehealth interviews) based on the patient’s Death Certificate to protect the privacy of
competency and a prognosis of a likely death the patient and the family. A VAD preference
within 6 - 12 months. This is an advisory role cannot be included in an Advance Health
only and takes into account a knowledge of Directive.
the patient’s type of MND (ALS; progressive
bulbar palsy; flail arm or flail leg; primary
lateral sclerosis); rate of progression;
and forced vital capacity in breathing; but
relies ultimately on the judgement of the
experienced MND neurologist.
8 - MND MATTERS Volume 10 Issue 1 MND MATTERS Volume 10 Issue 1 - 9
Shower stools and shower chairs
Shower stools and chairs are designed for people Sliding transfer bench
who have poor balance or cannot stand for long
periods in the shower. It is preferred that showers have level access for
wheeled devices such as a commode. If there is a
Shower stools tend to have a smaller frame which shower hob and it is not possible to have it removed,
suits smaller spaces. a transfer bench positioned over the hob may be of
Shower chairs provide stability and back support use. This enables the person to sit on a seat which
and have drainage holes in the seat to allow water to can slide across, bringing them into the shower
pass through. recess. The person may require support to lift their
legs up and over the hob as they move across. This
Both are available with or without armrests. Armrests item can also be used over a bathtub.
make it easier to transfer from a sitting to standing
position.
The frames typically have height adjustable legs to
cater to individual needs. In sitting, ensure your feet
can be comfortably planted flat on the floor as this
provides stability. If your feet are dangling above
the floor, then the seat is too high and should be
adjusted. Handheld shower hose
A removable, handheld shower hose makes it a lot
easier to clean your entire body. Adjusting the height
of the shower head makes for a more comfortable
water flow for those who sit for showering. Being
able to remove the shower head enables you to
direct the flow of water toward areas it would not
otherwise reach as easily.
Sophie’s Soapbox Bath mit
For those who experience weakness in their hands,
DON’T DROP THE SOAP maintaining a grasp on a flannel can be difficult.
Consider using an elasticated mit as this means you
Regular showering is important for maintaining will not have to grasp anything. These are available
personal hygiene, however for those who at most chain supermarkets and pharmacies, I found
experience fatigue and mobility issues, it can Shower commodes a 2 pack of them at Target for $4.
become an arduous activity. Some of the key issues
experienced by people with MND that impact on A mobile showering commode provides a greater
showering tasks include fatigue, limited tolerance level of support, and simply put can be likened to
for standing, reduced strength and balance, and a waterproof wheelchair. The seat has an aperture
impaired fine motor control. (opening) and so can also be positioned over a Soap dispensers
toilet, eliminating the need for additional transfers
There is a plethora of equipment available to between toilet and shower. There is a range of A dispenser can release soap at the press of a lever,
enhance safety and support energy conservation. features that can be selected depending on what designed to be used one handed. There are also
Here are some examples of equipment and you require. For those who struggle to maintain an automated dispensers that pump out soap when
strategies to promote safety and independence in upright trunk position, a ‘tilt in space’ function can be motion is detected directly in front of it. This can be
showering. used to tilt the chair back slightly, which increases more efficient than manipulating heavy canisters.
postural support. A padded pressure care seat can Such dispensers can be used for soaps, shampoo,
be used to improve comfort, especially for those who conditioner, lotions etc.
sit for longer periods of time.
These ideas are just a drop in the ocean of what is available. Everyone has their own unique
routines, preferences, abilities, and bathroom environments. An occupational therapist can
provide assessment and recommendations for interventions, particularly around bathroom
modifications, strategies, and equipment prescription to support individuals to optimise safety
and independence in showering.
10 - MND MATTERS Volume 10 Issue 1 MND MATTERS Volume 10 Issue 1 - 11
2.Social Media is your friend.
Asking for money can be hard, although
it is important to remember that you are
asking for money to help someone else, not
yourself! But social media is a great way
to collect donations without having to ask
someone directly! I recommend posting
about your event / fundraising activity every
couple of days (and more often in the week
of the activity).
“Only 10 sleeps until XYZ. Please support
me and help to raise much needed funds
for Motor Neurone Disease WA. Everyday
in Australia 2 people are diagnosed and 2
people pass away from MND. MNDAWA are
there for people when they need it the most,
right here, right now!”
Sarah’s Fundraising Files: 3.Every cent counts!
I often get told “I’m not a fundraiser, I You do not have to raise $1 000’s to be a
wouldn’t know where to start” then suddenly, successful fundraiser. If everyone on our
with a few pointers, they have exceeded their database raised just $30 a year ($2.50 a
wildest fundraising dreams! month, 57c a week, 8c a day) we would have
enough money to run our services each and
Everyone can fundraise. Fundraising every year!
should not be scary. Fundraising should be
enjoyable!
Imagine what we
could do if everyone
Here are my top 3 fundraising tips to get you
started.
1.What do you and your friends / family raised 20c a day?!
like to do?
Generally, you will be asking people you
know for money so have a think what you
would enjoy doing as a group. There is no
point in organizing a movie night if you and
your crew NEVER go to the movies. But
every Sunday a group of you go to the park
for a picnic and have a mini cricket match;
Charity Picnic and Cricket - $10 donation
per person and everyone brings a plate.
Hold a raffle whilst you are there (ask
local businesses for prizes) and sell MND
Merchandise
(Email: admin@mndawa.asn.au for more info.)
12 - MND MATTERS Volume 10 Issue 1 MND MATTERS Volume 10 Issue 1 - 13
Walk To D’Feet MND
Our signature event, Walk to D’Feet MND, the Burswood Park Board, Optus Stadium,
is back in May but we need you! City of Perth, Main Roads and the Town of
Victoria Park for their support of this event!
The Perth walk marks the commencement of
MND awareness week, which is recognised For the second year Walk to D’Feet MND
throughout Australia from 2 to 8 May 2021. Geraldton is being held on Sunday 16
May 2021. Walking 4km along Geraldton
Our Perth walk will be held in Burswood foreshore.
Park again this year on Sunday 2 May 2021.
Everyone who did the walk in November last Thank you to the City of Greater Geraldton.
year was very impressed with this location so
we are very excited to be back at Burswood Our Bunbury walk is back for the fourth year
Park this year. on Sunday 30 May 2021 at the beautiful
Koombana Bay! This 4km walk goes along
The 5.5km route starts at Burswood Park, the foreshore and around the inlet before we
goes past Optus Stadium, over the Windan turn around and come back again.
Bridge, through East Perth and over the
iconic Matagarup Bridge before heading Thank you to the City of Bunbury.
back to Burswood Park. There is also a 4km
option for those who need it. All walks start at 11am but the “walk villages”
will be open from 9am for registrations and to
Our thanks go to Brightside Live, Hertz get into the Walk to D’Feet MND spirit.
Australia, Yahava Koffee Van, Rotary Club
of Como, Street Hassle events, Wasamba, Information on how to register for this year’s
walks will be on our website soon.
FUNDRAISING It costs over $1,000,000 a year to support
We rely heavily on your fundraising as your local people living with MND and Walk to
registration fee simply covers putting on D’Feet is our largest fundraising event in
the events! When you register you will get the year! This year we aim to raise $40,000
your own fundraising page which you can from Walk to D’Feet MND Perth, $10,000
personalise. A personal story is always a from Bunbury and $5,000 from our Geraldton
winner when it comes to fundraising. event.
You can share your page on social media
or via email and ask people to donate to VOLUNTEERS
you that way! Or why not get your friends We are always on the look out for volunteers
together and put on some small events to to help with our walks. Jobs include parking
raise even more money… a sausage sizzle marshals, registration, raffle ticket sellers,
in your street or maybe a virtual quiz night! route marshals plus lots more.
Call Sarah on 6186 4133 if you want any
ideas or to discuss fundraising. Please email Anne on
Anne.Northall@mndawa.asn.au or phone
6186 4133 if you would like to volunteer.
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15
Dive For
Dollars
Rottnest
2021
Our favourite weekend of the fundraising year -Dive
For Dollars Rottnest!
On Saturday 6 and Sunday 7 March 16 brave souls put
their fears aside to jump out of a plane and raise $50,000
for MNDAWA!
The weather wasn’t kind to us on the Saturday but
thankfully the clouds blew over and our jumps were able
to happen, albeit 3 hours late!
We are grateful to all our jumpers but a special shout out
to Judith Harvey, who is living with MND, and fulfilled a
dream to see the island from the sky, having spent years
researching the Rottnest flora.
Sunday’s weather couldn’t have been better, blue skies
and not a cloud in sight! Thanks again to everyone
who jumped but we would like to acknowledge Graham
Bullock who is also living with MND! His support crew
of over 30 people were able to watch his incredible
achievement and there wasn’t a dry eye between us all!
We will be jumping again on 5 & 6 March 2022, which is
a long weekend so why not make the most of it and enjoy
a staycation on the island!
Registrations will open on 1 May but please call Sarah on
6186 4133 if you would like more information!
MND MATTERS Volume 10 Issue 1 - 17Fundraising in the Community
Want to hold a fundraising event for MNDAWA?
MNDAWA relies heavily on the generosity and support of the community to enable us to continue
our vital family care and support services.
If you would like to fundraise for MNDAWA or discuss ways in which you may be able to support
us please contact Sarah, our Fundraising and Events Manager on 6186 4133 or
Email: admin@mndawa.asn.au.
If you have organised a fundraiser and would like your story shared in the newsletter please let us
WALK TO D’FEET MND
know.
THANK YOU!!!
REGISTER ONLINE:
We have many generous groups and individuals who fundraise for us throughout the year and
we always like to mention those who raise awareness and funds for people living with MND in the
community.
We would like to thank the following for their fundraising and donations:
www.walktodfeetwa.com.au
Our Blackbird preview screening fundraiser
was held on Wednesday 17 February 2021
Walk in Honour, Walk in Memory, Walk in Hope
at Luna Palace Windsor Cinemas, 110
people attended, and we raised $3000.
MNDAWA’s largest
SUNDAY
Tina Ingraham for organising Run for MND
at Leighton Beach on 20 February 2021 over community event
100 people took part and they raised $3562.
Perth Hash House Harriets Blue Dress Run
2 MAY raising vital funds and
awareness to D’Feet
was held on Tuesday 2 March 2021 and BURSWOOD PARK
raised $1775. This annual run is in honour
PERTH
Motor Neurone
of their beloved life member “Waddles” who
Disease
sadly lost her battle with MND 20 years ago.
SUNDAY
16 MAY Registrations
GERALDTON FORESHORE (early bird until 9am - Monday 12 April)
Adult - $25
SUNDAY Child - $10
Fur Baby - $10
30 MAY Family - $50
The second ‘Playing Through for MND’ Golf (2 Adults & 2 Children under 16)
Fundraising Day was held at Araluen Golf KOOMBANA BAY FORESHORE
Resort on Friday 12 March. We are pleased
to share that just over $6000 was raised BUNBURY Walk t-shirts, Socks, Dog
on the day and much fun was had by all. A Bandanas and other merchandise
massive thank you to the team at Araluen, available to purchase online
along with all our supporters and participants
on the day. The next ‘Playing Through for
MND’ event will be held on Friday 29 October
2021. Feel free to email Trudy Renshaw at route suitable for all - 11am start
tpow87@gmail.com or contact 0413 891 885
if you’re keen to be involved and have a
tee-rific time!
10 - MND MATTERS Volume 10
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19Cape to Cape For MND Day 4 - Gracetown to Margaret River Mouth
A soft and sandy 17.5km today and we officially
passed the halfway mark at the Margaret River Mouth.
On 20 March, 16 fundraisers headed down to Cape The day started with our usual preparation strapping
Naturalist to start their EPIC adventure walking the of feet, magnesium oil and of course coffee. Many of
Cape to Cape track for MND! us expecting that this would be the day we would ‘find
our legs’.
The group have been training for over a year for this
trip of a lifetime and spirits were very high! We have challenged ourselves physically and
supported each other to get through some tough
Cape to Cape Diary: sections.
Day 1 – Cape Naturalist to Yallingup It has only been 4 days, yet it feels like we have been
Just the beginning... together for weeks. There is something really special
about a group of people who come together with a
8am, bright eyed and bushy tailed ready to bus our shared purpose or experience. We have laughed and
way to the start of our epic adventure. 1pm, 4 wee cried as a group and shared the emotional stories
stops and a 5 hour bus journey the 16 arrived at Cape that have brought us all together, forging some lasting
Naturaliste, ready and raring to go! friendships, on a journey like no other.
Day 5 - Margaret River Mouth to Boranup Forest
I’m not sure any of us were prepared for what lay
ahead but the views, camaraderie and finishing 26km was never going to be a stroll in the park but oh
sunset chased all the aches and pains away! what a day we had. Hills, caves, ocean, forest, stairs,
sand, sore toes and aching muscles. Today we saw it
15km, 3 sore toes, 5 dodgy knees, 2 broken Achilles, all and we feel blessed to live in such a beautiful part
1 March Fly bite and a lot of chafing (luckily there was of the world.
a suggestion that lip balm has several uses). Roll on
Day 2. Loved ones were close today as we fought through
the pain. It’s incredible what the body can achieve
when the mind is willing.
Day 2 - Yallingup to Injidup Day 6 - Boranup Forest to Cosy Corner
‘Plans do Change’
Is there any greater show of “mateship” than walking
After a rocky start we headed out for another gruelling in someone else’s footsteps to make the beach walk
but rewarding day. Today brought changing terrains, that little easier?
multiple dolphin sightings, some challenging beach
walks and the most unforgiving surf breaks. After 7km past Karri trees and in the cool of the forest,
like lines of elephants holding tails the team walked
For those of us that chose to swim, we experienced along 8kms of gruelling beach followed up by up and
the full power of Mother Nature as we navigated the down and up and down and up... you get the picture,
strong currents and dumping waves and got spat out. for a final 6km.
Back in Margs we enjoyed recovery time by the pool Toes are taped and backs are sore but we have
and bonded over shared story telling and precious memories to last a lifetime and more love in our hearts
memories shared of our loved ones we have lost to than we ever thought possible on a 7 day hike with
MND. strangers!
Together we reflect.....how can something so Finally, singing on the bus on the way back to the
challenging to the individual...seem so effortless? hotel. A true show of camaraderie mixed with a little
bit of delirium following 114km of hiking over the last 6
Simple answer.....because we have each other! days.
Last day tomorrow but truly none of us want it to end!
Day 7 - Cosy Corner to The End (Cape Leeuwin)
“Simply the best”
Day 3 - Injidup Beach to Gracetown The last day was always going to be interesting.
21km with sore legs and feet, full hearts and a steely
Following the slowest day known to man on day 2, determination...
day 3 started with an extra 8km walk... taking us to
our 2nd longest day for the week and 22km. Beautiful, challenging, breathtaking and hilly. All with
the lighthouse in the distance. Slowly getting closer
Sand, boulders, hills, wind and a few sore toes but and closer.
without doubt the best day so far!
We walked in memory of many loved ones today but
Friendships have been firmly formed and the talk hold one person closer.
about loved ones lost today will forever be imprinted in
our memories. How incredibly special! Vale Mark.
22km is no small feat but knowing why we are doing Friendships will last a lifetime. Memories will last even
what we are doing keeps us plodding onwards. longer.Grief is the price we pay for love
can also grieve things they long for but never got.
• Grief touches everyone; it doesn’t discriminate
Motor Neurone Disease
Online
across age, gender, income, religion or culture.
Grief and mourning are necessary.
• Grief is on the inside; mourning is on the
outside. Grief is an internal response to a
Bereavement Support Group
loss, including the thoughts and feelings we Join us as we support each other and discuss some of the ways the loss of a loved one to MND
have. Mourning is an external expression of
those thoughts and feelings. Crying, talking, can affect our lives.
writing, painting, running, and making music are
examples of mourning.
• To be bereaved refers to the experience of loss The purpose of this group is to provide information about the grief process; to share
Supporting our MND community over the last that comes from the death of a close relation or experiences; and to alleviate the feeling of isolation.
couple of months has highlighted the importance friend.
of grief and the need for support, education • Mourning is an essential part of the healing
and connection within our community. Grief is a journey. This group will be facilitated by Leanne O’shea our grief & bereavement counsellor from the
very natural and important response to loss and • Mourning is a learned skill.
caring for someone with MND and navigating • Rituals where people mourn together are a South West Grief & Loss Centre and will run over six sessions.
the illness. Loss will occur as you adjust to the powerful part of the grieving and healing process.
diagnosis, disease progression and daily lifestyle When: Mondays
changes. There’s no one way or right way to grieve or
mourn. 14/6/2021, 12/7/2021, 9/8/2021, 13/9/2021, 11/10/2021 & 8/11/2021
Grief is the emotional response to many losses
we experience and allowing yourself to express, • There are no easy formulas for dealing with
explore and observe your grief will develop grief.
self-awareness, the importance of growing your • Each person has their own experience of living
connections, the trust of community and the TIME: 3.00 pm to 4.00 pm online via Zoom
with and growing through the process.
safety of a listening ear. Grief evokes feelings, • There is no fixed timeframe for grieving or
pain, questions and understanding. mourning
“Grief is not a disorder, a disease, or a sign RSVP: By 1 June 2021
Apart from one on one free grief counselling
of weakness. It is an emotional physical and sessions available to our clients and families, Phone: 6186 4133 or email education@mndawa.asn.au
spiritual necessity, the price you pay for love. MNDAWA is also developing support groups for
The only cure for grief is to grieve” Rabbi Earl A. members who are bereaved from losing a loved Please advise name & email address of person attending
Grollman, Ph.D. one to MND. This important program allows you
to maintain contact with our organisation along
The way in which we manage loss is with other members experiencing the same loss Though grief and healing has its own pace, professional support can facilitate this difficult
very important, as it can greatly affect our and shared experience. You are not alone in journey.
relationships and self-care. We may initially navigating your emotions of grief and connecting
feel like we can cope on our own, but feelings with us for support is one of our most basic
of grief can catch up with us. Grief is a natural human needs. I encourage you to be open to MNDAWA offers free grief support programs to carers, families and loved ones who have lost
phenomenon, a process and a journey we support. Our bereavement support groups are
must be willing to travel. In order to move with someone to MND. Our experienced bereavement counsellor provides support in a calm and
confidential, compassionate and safe for you
MND we need to be willing to take the next step to share your stories; helping others to do the supportive setting, we will help you understand the grieving process and teach you ways to
forward. We need to grieve the loss before we same.
can accept it. manage grief and find the strength to heal.
Allowing yourself permission to grieve and
A few tips to help you navigate your personal develop awareness at all stages of MND is
grief, supporting family and friends. For further information on the support group please contact:
important to your wellbeing; therefore remember
• Grief is normal, painful, and messy.
l am available to all MNDAWA families for grief Leanne O’Shea on 0407 995 978
and loss support. Please call the office on
• Love and grief are a package deal and are 6186 4133 or Leanne directly on 0407 995 978 to
always intertwined. We can’t love without grief or “Grief is not a disorder, a disease or sign of weakness. It is an emotional,
schedule your sessions. Also available afterhours
grieve without love. and on weekends – upon request. physical and spiritual necessity, the price you pay for love. The only cure
• The only pain that can be avoided is the pain for grief is to grieve.” Earl Grollman
that comes from trying to avoid the pain. Leanne Oshea
• People grieve many things (not only the death
of someone they care about). People grieve the MNDAWA Grief Counsellor
loss of a job or their health, a former home or
community, the end of a partnership, children
who’ve moved out, the death of a pet, ecological
destruction and other global tragedies. People MND MATTERS Volume 10 Issue 1 - 23Online Toolkit for Family Carers now available
Carers and Past Carers Lunches
Family and friends play an important role in caring for their loved ones who have MND. MNDAWA
is delighted to announce the release of our online toolkit to support MND family carers and provide
them with a ‘one stop shop’ for information and resources. Our last Carers Lunch was held at Catalano’s in Victoria Park on Wednesday 31 March
2021.
Based on research, the toolkit has nine sections that provide information and relevant links for
carers. It supplements our existing supports for carers (e.g., through our MND Advisors and other We would like to invite carers and past carers to come along and enjoy a meal together
supports provided by MNDAWA) and will allow carers to look for information in their own time. in a supportive environment and share ideas with each other about caring for someone
Please also discuss your support needs with your MND Advisor. with Motor Neurone Disease.
If you are a carer or past carer and would like to attend any of the carers lunches please
contact the office via email: admin@mndawa.asn.au or phone: 6186 4133. Please advise
name, phone number, email address.
The next carers lunches are planned for:
1 Friday 16 April 2021, 11.30 am to 1.30 pm Mia Cucina, 1/45 Northside Drive, Hillarys.
Please RSVP by Thursday 8 April 2021.
2 Wednesday 19 May 2021, 11.30 am to 1.30 pm, Tree of Life Café, 31 Sholl Street,
Mandurah. Please RSVP by Tuesday 11 May 2021.
3 Wednesday 9 June 2021, 11.30 am to 1.30 pm Oakover Grounds, 14 Yukich Close,
Middle Swan. Please RSVP by Tuesday 1 June 2021.
MND Global Day Function
The toolkit is available from the home page of our website – www.mndawa.asn.au or directly at Every year the International Alliance of ALS/MND Associations celebrates 21 June as the
https://www.mndawa.asn.au/family-carer-support global day in recognition of ALS/MND. A disease that affects people in every country of
the globe.
We’d love to hear your feedback on the toolkit, especially if you think there is additional information
or resources we can include. Please complete the feedback form on the website to tell us about Motor Neurone Disease (MND) is a global problem. It does not discriminate on the basis
your experience. of race, ethnicity or demographic. It is a devastating disease that affects over 350,000
of the world’s population and kills over 100,000 people every year (International Alliance
of ALS/MND Associations). For every person diagnosed with MND, the impact of the
A Great Place to Stay disease will be forever felt by their loved ones.
WHY 21 JUNE? June 21 is a solstice – a turning point – and each year the ALS/MND
community undertake a range of activities to express their hope that this day will be
We recently went on a family holiday and booked into the Ramada Hotel in Dunsborough. another turning point in the search for cause, treatment and cure of MND.
This hotel location and facilities were excellent for my wife who has MND. This year MNDAWA will be holding our global day function at the WA Museum Boola
Bardip in the Perth Cultural Centre.
We had a great room on the ground floor with all disability requirements. We were able to use all
the ground facilities via her mobility scooter. My wife was able to follow the grand kids using their We invite clients and their carer to join MNDAWA for lunch on Monday 21 June 2021 at
scooters on the paths and follow them down to the playground. This was great as she was fully 12.00 pm. After lunch you are welcome to wander around the museum at your leisure.
inclusive in everything we did.
Registrations are required for this event so please RSVP by Tuesday 1 June 2021 via
The grounds including the pool area were all on one level and very accessible for my wife. Access email: admin@mndawa.asn.au or phone: 6186 4133. Please advise your name, phone
into the pool was easy with a handrail and big area steps so carers can assist. The pool was the number, email address and any dietary requirements.
perfect depth and brilliant for exercise or just moving around. The grounds also had free BBQs
where I could cook and all the family could play on the grass, kicking a football. Very enjoyable.
The staff were excellent and very helpful.
I would recommend the Ramada as a great get-away.
Geoff
24 - MND MATTERS Volume 9
10 10Issue
Issue41 MND MATTERS Volume 10 Issue 1 - 25Grazie Gifts has partnered with MNDAWA to help make a difference in the lives of
people suffering MND and their families.
Purchase a gift from their MNDAWA gift collection and they will donate a percentage
of the proceeds to Motor Neurone Disease Association of WA.
Suitable for many occasions, treat yourself or a loved one while supporting
MNDAWA.
Please use the following link to access the website:
https://www.grazie.com.au/product-category/operation-medical/mndawa/
1.Sweetness- $60 delivery not included 2. Thinking of You $100 - delivery not
- $5.00 donation to MNDAWA included -$10 donation to MNDAWA
Always wanted to own a
Thermomix????
How about the chance of owning one
for $25?
Our Thermomix raffle gives you a 1 in
200 chance of taking home a brand
new Thermomix plus a cooking lesson
from Michaela Carr.
To purchase tickets please email
Michaelacarr@hotmail.com
3. Afternoon Delight $120 - delivery not 4. Let’s Share- $150 delivery not
included- $15 donation to MNDAWA included- $20 donation to MNDAWA
26 - MND MATTERS Volume 10 Issue 1 MND MATTERS Volume 10 Issue 1 - 27A Trip Down Memory Lane
The Motor Neurone Disease Association’s
annual street appeal in 2003 collected twice
as much money as the 2002 appeal because
of help from people such as Joy.
Joy runs a craft group that raises money for
the association and is a volunteer visitor to
people living with the disease.
Joy was also on the association’s Board and
used to travel to lend support to her parents
on weekends.
During our office move we came across “When you have been exposed to the
some old newspapers, files and photos so devastating effects of MND first-hand, you
we have decided to cover some of these want to do everything you can to raise funds
in our newsletter under the heading “A Trip to support MND patients and assist the
Down Memory Lane” association’s ongoing research into this cruel
disease”, she said.
This article is about Joy Diver, who spent
many years volunteering her time to MNDWA Joy has been part of the association since
since its inception and made a significant it first started meeting once a month in a
contribution over the years by raising funds church hall.
and being an active member of the Board.
Joy sadly passed away last year during “I really don’t want others to lose their family
COVID and her family held a memorial or friends to MND like I lost my father,
service in March to celebrate her life. defeating this disease really has become my
mission”, she said
This is an article that was published in the
Stirling Times on Tuesday 13 January 2004 “Everyone needs support, now there is a lot
and was written by Pamela Medlen. more support and care available to people
and carers”.
Joy’s Mission to Help
The 2003 appeal raised $6500 for the
One woman’s experience with motor neurone support of people who live with the disease.
disease has driven her to raise money for
research into the disease.
Joy Diver’s father died from the disease
(MND) 20 years ago and she made it her
mission to do something about it.
10 - MND MATTERS Volume 10
28 9 Issue
Issue41 MNDMATTERS
MND MATTERSVolume
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