Carers Week 2026 | Robyn's Story 

Firstly, our thoughts are with you all on this unexpected journey. None of us have chosen to be a part of this "sh*****t show" and it drastically changes all our lives.  When I start to feel sorry for myself, I remember that my husband of 46 years, is living with MND every second of his life. I can still function, I am healthy and I can still have a "short break" from everything and I am very grateful for that.   

It's certainly not the retirement adventure we envisaged. But, again, we are grateful we made it to the age of retirement and have enjoyed a few years of travelling and experiences we both worked hard towards. Tragically some of you are facing this sh***t disease far too young and that's NOT FAIR! (We think we are far too young to be facing it too!!)

My hubby, Dick, was diagnosed with slow progression ALS in July 2023, but, retrospectively, we have no doubt some symptoms emerged at least a year before. He underwent numerous medical appointments, physio /chiro treatments, scans, MRI's, etc, a back operation before the "drop foot" symptom really triggered the assumption that his condition was neurological and probably ALS. 

Once diagnosed we both wanted all our family and friends to know what was happening.  We realised that the news would filter out, at some stage, and we wanted everyone important to us to be informed by us.  

We have never wanted to know everything about MND and we do not talk about it much. We have found it easier to cope this way and only find out what we need to know at the time. We are endeavouring to live our lives as "normally" as we can. Whilst MND is always there and drastically affecting our lives, we have chosen not to let it dictate every one of our feelings or thoughts, when possible.

Dick has previously participated in a couple of Trials. He wanted to help with researching a cure or other assistive treatments. For the first 6 months of one Trial, the medication administered caused no reaction, but once the "real medication" was provided, he experienced some severe symptoms that may or may not have been attributed to the medication, and treatment ceased immediately. 

The research team were always accessible, very helpful, caring and are working extremely hard to discover a cure. Quite a few Trials required more frequent visits to Melbourne and living 4 hours from the hospital it wasn't practical to participate in those. 

Dick’s condition originally deteriorated slowly, from walking with a limp, to walking with a stick, but as his balance and mobility deteriorated, he required a walker and then a wheelchair, but still with the ability to transfer. However, in the last 3-4 months he has deteriorated rapidly and now requires the assistance of a lifter to transfer and is a full-time wheelchair user.  He requires full-time accessibility to a carer and is unable to perform many functions we all take for granted. 

His hands and arms have deteriorated significantly and he now has limited use.  So far, his swallowing is okay, but he has trouble getting the food to his mouth. His breathing, whilst deteriorating slightly, he doesn't require oxygen etc.

Dick has been able to retain his positive outlook on life and is still great company, even though he, no doubt, feels frustrated by his lack of independence and loss of his previous lifestyle. He often says, "it is what it is and we can't change it".  

Thankfully, we have lots of friends and family that continually visit, ring, offer and provide assistance and bring a lots joy into our lives. This has been invaluable to us both.  

We have found that there is a lot of support there for us. A special thank you must go to the wonderful team at Calvary Bethlehem in Caulfield, our local GP, and medical team, the Uniting Aged Well, the Home Care Provider team, the Palliative Care team and everyone else who has and are supporting us. Carer’s Gateway is another wonderful association who are there to assist. 

Whilst I am Dick's full-time carer and on call 24/7, I am still able to attend appointments, attend to any errands required and find some short-term respite (up to a couple of hours at a time) to catch up with a friend, attend yoga, gym or just go for a walk and a coffee.  

Dick is currently going through the process of Voluntary Assisted Dying. Thankfully, NSW provides a compassionate, supportive process that is relatively quick and easy, if you are fortunate and/or unfortunate enough to be eligible. We hope the Tribunal sees fit to approve this application. Whilst it is a decision we don't really want to think about, it is comforting to us that Dick has the choice, if approved. 

I am very grateful to be associated with the MND carers support group in Victoria and NSW. We live in Moama NSW on the Victorian border. Whilst Victoria cannot provide all their services to us (ie equipment hire), they are wonderful to deal with and have offered me so much support at various times. MND Victoria has also provided many opportunities to attend lunches and other functions.

MND NSW also provide lots of support and we have borrowed many items of equipment through their Association. The latest is an electric wheelchair which has improved Dick's comfort and support. 

Andrea, (MND Victoria Carer Program Coordinator) and Lisa (our designated MND coordinator (from Victoria) are, in our opinion, invaluable to us and the Association. They are both wonderful, compassionate and helpful ladies. They offered us some unexpected and much appreciated support when we faced some extremely frustrating challenges in transporting Dick to the Calvary Bethlehem Hospital for some respite and assessment. Dick is unable to transfer into and out of our car now so the only way he can go anywhere is in a wheelchair taxi (or similar vehicle) or, as was suggested to us, a Non-Urgent In-Patient transport. Unfortunately, neither the Victorian nor the NSW service would transfer or venture across the border. We will forever be grateful for Andrea’s and Lisa’s assistance. 

Thank you again to everyone who has been supporting us on this journey (hopefully I haven’t missed anyone) and we send our love and hope to everyone facing this sh***t disease.