Shell’s MND Marathon

Reason for Running: Research

Friday 6th Sep

Research Symposium 

This month I attended the MND Aus/NZ Research Symposium and was beyond privileged to listen to dozens of scientists and health care professionals discuss their contribution to MND advancements. I have walked out of these intense days with a lot more questions than answers, but perhaps this is a positive asset. The questions mean there is direction, there are next steps to take, there is a tread to follow leading to answers. 

I was shocked at the complete disproportion in areas of research, with around 20% linked with patient quality of life and immediate needs. It once again raises the struggle I face as a person centred clinician in a medical field, where science and economic gain overrules humanity. It was cute to see women in STEM show giddiness over atrocytes and become passionate about glial cells being forgotten about, but I wanted to shake them and say “what about the people? Have we forgotten about them?” 

I would be lying if I said I understood everything that was discussed; for there was so much biochemistry talk that completely went over my head. I heard TDP-43 and SOD1 mentioned more times than I can count, but was pleased to giggle at jokes around T values, and be unashamedly nerdy when discussing trimetazidine to counteract hyperexcitability. (I won’t bore you with this today). Despite these fun acronyms, I felt overwhelmed by the thick content that felt impossible to chew through and my imposter syndrome hadn’t settled down. More than that, it made me question whether I held a place in the research field as none of the areas of study I want to pursue were even touched on.

The tone of the conference shifted when there was a presentation from PLEx (People with Lived Experience). After this followed a series of presentations from health professionals discussing inequitable access to care and a call for improved professional development. I have never been more proud to be a clinician and eagerly drank every word that was said. These past months my routine and lifestyle has focused around running for research and these are the studies I am honoured to be supporting. 

There was also a wonderful panel of scientists and MND advocates discussing new models and guidelines for clinical care where the range of questions truely highlighted the breadth of uncertainty. I want to highlight two specific moments of questions I had been internally screaming the whole conference. 

1. No person on the panel believes there will be a cure within the next 50 years. There is still ongoing debate around whether targeted treatment or cocktail therapy is more beneficial, and we are only starting to find biomarkers to track progression and drug effectiveness. There are so many pathways affected by MND yet the percentage they contribute to prognosis is varied between patients. Why are we investing so much into research that won’t be useful for people who have MND now? Why is quantity of life more important than maximising the quality of life for people with MND; ie improving their immune systems so pneumonia doesn’t result in hospital admissions and death? (to paraphrase)

2. How do we get more funding into health care? 

The answers go hand in hand; most funding bodies and philanthropic companies want to invest in something sexy and innovative. NFL biomarkers? Hot. A wheelchair for a patient rapidly declining in motor function? Boring. But it’s this ground up patient centred approach that makes research important. We know that NIV improves fatigue levels and prognosis from oxidation, yet we are still fighting for early education of NIV in clinics, specific markers of when it is appropriate to start, and the funding to receive a device. We know that people attending MND clinics with MDTs have improved quality of care, yet there are still hundred of patients without access to a clinic, attending clinics that don’t have the guideline recommended disciplines involved, or have to travel outside of their state to attend one. 

This research symposium has provided a stronger sense of hope that we are on the right track forward. On day 1 I worried if my passion and burning questions held a place in this field, but I know that this lack of representation for early education effectiveness and alternative quality of life focused treatments subsequents to my responsibility to highlight them. These questions are important because they are being asked in patient homes and hospital rooms, and I can’t wait to work alongside such brilliant minds to answer them. 

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Reason for Running: Ray

Friday 23rd Aug

Today is my final day working full time at Arcadia. I’ve had the privilege of a position where I support patients and families, and work amongst incredible teams of allied health, nursing staff, and specialists. I went into the role keen to specialise in neuro and upper limb rehabilitation, and spent lots of time with stroke and brain injury patients. I am leaving this role with such a deep understanding of the importance of family support and comprehensive education, and a renewed love for geriatric care. In honour of moving forward from this position, I’d like to talk about one of my MND patients I worked with. 

Around 9 months ago, Ray was admitted to the hospital I work at having just been diagnosed with MND. It was the first opportunity I had as a practicing occupational therapist to step into a different role. I was a part of the team that was involved in his initial plan and could actually make an impact in the way he and his support network approached and understood the diagnosis. Ray was a patient who knew next to nothing about MND and how it would affect him except that it would kill him. Like I have said so many times before, there is so much space that exists between diagnosis and end-of-life stages that deserve to be explored and filled up; and Ray deserved the right to know about his options. 

Around 2 months prior to Ray’s admission, I attended the first MND NSW Education for Health Professionals, Carers and Family Members days. It was a great learning opportunity for myself and so many other allied health workers within this space to consider new methods of treatment, various resources readily available to us, and most importantly ways to approach patient and family care. The progression that MND NSW has made within the last few years is insane - education modules catered to health professionals and family members specifically, access to equipment loan pools, ongoing community connection events to decrease loneliness, regular fundraising opportunities that contribute to research, and a sense of direction for those newly diagnosed. Ray was also the first patient that I linked in with MND NSW and it was amazing to see how attentive the staff were in their follow ups with both myself and Ray. 

Lots of my job has involved discharge planning from hospital and setting people up to be as independent as possible. Unfortunately, I see a lot of cases where patients are not set up enough to return home and the waitlist for the services + resources they need is too long. Yesterday I had one of many family meetings where I unfortunately had to recommend a lovely man with normal pressure hydrocephalus move to permanent care. It is a really hard conversation to have and a really sad conclusion to be drawn, however I know that if early intervention and future planning had occurred then this may not have been the outcome. 

As I say goodbye to this position, I welcome the new opportunity to specialise in “Chronic Disease Palliative Care” where my exposure to and capacity to work with patients with MND will increase exponentially. Almost everyone I tell about this position is a bit taken aback by my glee for this role (palliative care is a jump scare to most) however I hope this will be a job where I can educate so many others on the quality of life that occurs within the palliative space. My 2ish years at this hospital has shaped who I am as a clinician and I am so excited to keep learning. 

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Reason for Running: Unanswerable Questions

Tuesday 13th Aug

I am a part of an MND Support and Information group. Originally I signed up to receive information about MND research and people’s experience, but I have become quite drawn to the statements of concern from many members and family members. Sometimes I will see big questions that I know the answers to and think to myself; how would I navigate a diagnosis like this if I wasn’t a health professional? The truth is that I would be absolutely clueless, just as most people are. 

Most of the time however, I will see big questions that I don’t know the answers to. These questions are what I think about when I run because these are the questions that deserve an answer. These are the questions that shouldn’t have to be asked in the first place. 

“I have so badly let my husband down…I put him in hospital. He waited 22hrs in emergency for a bed, went 3 days without a shower, his food was put in front of him with no one to feed him”, 

“He has lots of choking episodes…what happens when all these muscles fail completely? I am too frightened to ask the Drs.”

“I just feel like a huge burden on everyone as I can do very little on my own”

“Knowledge is powerful, but I find it so sad that while we are at our lowest we have to fight the hardest” 

“I have a 7-year-old daughter…how do I go about telling her that Daddy is going to die?”

“What do you even write in a birthday card that is likely to be her last?” 

This week’s blog is short because these words speak for themselves. I think I could create a full time job for myself by replying to every blog post, but what these families are searching for most of all is to know they are not alone. These families deserve answers.

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Reason for Running: Sara (p2)

Monday 29th Jul

Within the MND space, I have learnt about many different government systems, funding bodies, and policies. Today is all about the National Disability Insurance Scheme (NDIS) - as learnt alongside Sara. 

One of the greatest analogies I have heard about the NDIS is that it is like a plane taken off in flight without the wings finished. This principle of the NDIS and what it sets out to do is fabulous; I can truely say that it has changed the lives of thousands of Australians and Bill Shorten has done such great things through it. I can see how great it is for the younger generations to receive early intervention and be empowered to maintain and grow their independence. However, we all know that anything government related is always going to have holes in it. The quality of service was lacking for Sara due to the ever changing nature of MND. 

“Choice and control” are words that we hear every 3 seconds in the disability space - all we aim to do is empower our participants to be involved in their decisions and care. What about the times when people aren’t able to speak and it takes 5 minutes for them to type one sentence? What about the urgent hoists required when mobility takes a hit and participants suddenly can’t get out of bed? How are people supposed to be empowered? Motor Neurone Disease is so different because there truly is no set prognosis and timeline, and therefore it makes the planning and advocacy space so difficult. It’s why I push for early education and making space for difficult conversations within my role. 

Recently I received good news that Bill Shorten has created a ‘specialist pathway’ in the NDIS for people with NDIS, so plan revisions and change of circumstances will be seen to by people who understand the condition. I truly hope this is an effective change. 

One of the best parts of working with Sara was the family she created with her carers and the way we were able to collaboratively work together. This was made possible by having consistent carers via NDIS funding with an abundance of communication. The NDIS set up of encouraging individual management enabled Sara to meet people prior to deciding they were right to join her team and be flexible with the hours of care she utilised. For people in the ‘My Aged Care’ space, there is a lot less choice over what support staff you have and control over the consistency of seeing regular carers. Having the same staff meant Sara often didn’t need to waste any breath talking about what she needed because we already knew. She didn’t need to constantly educate staff on correct sling positioning or how to use equipment for her specific body type. She knew us and we knew her, and it brought so much joy to the home. 

Right until the end, we were able to stay with her in the hospital and palliative care unit to provide the most intimate type of care without direction. I have never been more surprised than the times I looked into Sara’s eyes and knew exactly what she was asking for me without even a gesture or facial expression. 

I sat in on a few NDIS meetings with Sara and it was always surrounded by some very emotional days. The stress of fighting for what she urgently needed to stay alive and the disappointment when it wasn’t given to her broke my heart. It was frustrating to have spent so much time preparing and gathering necessary documentation from allied health staff that wasn’t even read prior to the meeting. Sara asked for me to speak on her behalf in some of those meeting when she was too breathless and too emotional - however what if there isn’t a support person with sufficient medical knowledge present? How are we supposed to advocate then? What I wish to see is NDIS workers who have substantial knowledge on health conditions and their practical implementations. I want time to be allocated so necessary documents that allied health have put hours into forming will be read and considered prior to meetings.

Most of all, I don’t want basic care and human dignity to be such a big fight.

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Reason for Running: Sara (p1)

Monday 15th Jul

I was privileged to work with Sara in 2022 for around 6 months. It was a time where I provided the most personal type of care, and was involved with her family and health team. Therefore, there is a lot I can say about my time with Sara that will amount to a few different blog posts. Sara once again taught me so much (as you will read) however the most special part was the way she opened her home to her carers and built a beautiful extended family for her daughter. It is one of my greatest joys to still be a part of her life. 

As per, I want to take a person centred approach and tell you about Sara before I dive into her journey with MND. Sara was a British woman who worked as a nurse and WHS officer for nursing staff. She raised a gorgeous daughter who continues to grow more strong, intelligent and kind. She was an avid horse rider and had 4 gorgeous horses when I knew her. Some of my favourite moments with Sara were spent at the stables, dying her hair pink and braiding it, and watching her nephew dance to Lilly Allen to her. There was always life in the home because of who Sara was - and it was her approach to having a palliative condition that assisted my understanding of what palliative care should be.  

Often we assume that palliative is a scary word because we associate it with the act of dying. I use this example often in my role to help families understand “palliative care”: picture a shoelace, then picture the little tagged bit at the end of the shoelace that keeps it from fraying. The section of that tag is the “end of life” stage, where there is active dying (i.e. morphine pumps, unrousable, and saying goodbyes). The whole rest of the shoelace is filled with life and opportunities, even with a palliative diagnosis. There is so much that can be filled in those spaces and good quality palliative care should focus on bringing about meaning and opportunity during whatever length there is and empowering patients to maximise their quality of life with intention. 

I want to touch on the idea of autonomy and choice when faced with a condition that strips you of so much control over your life. As mentioned, horse riding was meaningful to Sara and she made sure she would still participate in this as able. At first, this looked like having a custom saddle to support her body as her posture and control was affected. As her muscles weakened and stiffened, it was essential that she has specialised support to prevent injury and utilise the muscle strength she still did have. With lots of hard work, she was able to receive a hoist that brought her from her wheelchair up onto her horse - insane! As incredible as this is, I can’t help but think of all the other people with MND who firstly don’t recognise opportunities like this can exist, and secondly don’t have the funding to do so. (More on the NDIS later…). When she stopped riding, we got ramps around the stables so she could watch her daughter ride, and finally we brought her beloved horse down to the palliative care unit during her final days. The team at MonaVale Palliative Care Unit truely went above and beyond and I can’t thank them enough. Right until the end Sara harnessed the opportunity to do what she loved even though it looked different. 

Her preparedness is another indicator of why I believe education and empowerment are foundational to the way we provide care. She worked with her team to determine what were non-negotiables in her care, even when the conversations around dignity of risk were challenging. (For my non-health care friends, dignity of risk is the understanding that anybody with capacity is able to make a choice regarding their care, even if it is against medical advice, knowing the consequences and accepting them). For example, Sara decided she did not want to be PEG fed and accepted the risk of choking. When she eventually lost use of her arms, she preferred to have us manually feed her so she could still enjoy the pleasure of food and taste. 

This extended on a day to day level as well; with Sara having to consider the impact of activities on her physical and emotional capacity. MND impacted Sara’s breathing, and therefore her energy. MND impacted her muscles, and therefore brought pain and fatigue. MND impacted the way people interacted with her in the community and her physical access to places. At first this looked like one day on and one day off, with activities followed by rest. As time went on the ratio increased and days with events needed a few more days of recovery; thus requiring the added mental load of prioritising what she wanted to do and planning her days and weeks in advance. 

Palliative care is one of the most special things we can do for each other, and it is also one of the most misunderstood areas of health. It was my time with Sara and the way she navigated this period that solidified my desire to work in this area and empower others to fill their space with quality of life. This Sunday’s 24km run had a special Lilly Allen tribute to Sara; more to come on her next week.

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Reason for Running: Robert

Monday 8th Jul

6.5 years ago I started working as an aged care community worker. I always knew health care was where I belonged, and this was my first opportunity to test that theory. One of the first clients I was privileged to encounter was Robert - a man with Motor Neurone Disease.

Who Robert was is the most important of this. He was a husband, a father, an uncle, a grandfather. He was an engineer (and a damn good one). He was an avid traveller and active man. He was a man with a great sense of humour and insane determination. Robert was one of the many people who reminds me to be person centred in my job and see who people are rather than what their disability limits them to. He taught me how to care for others (and to put more money in my superannuation). 

Robert had lost his speech, which completely changed the way I thought I should work with someone. At the time, I was not as patient and am continuing to learn holistic consciousness of another. I have since learnt little changes; such as letting people finish typing on their speech to text dictation devices rather than not prematurely guessing the phrase to “make it less work for them”. I was so blessed by Robert writing me a letter of life lessons and frequently preparing travel stories to tell me via his iPad; knowing that each letter was immense strain on his muscles. I hold those words close to my heart.

As an 18 year old girl, it was definitely daunting to be introduced to a completely new world of health care; especially one that is palliative and neurodegenerative. I inquired about the health and medical related elements and answers were easier to come by as I was surrounded by professionals. Subsequently, this knowledge was for my own understanding and didn’t directly impact my wellbeing. However, this new world is vastly different to patients and their support network; they are learning things they do not want to have to know. Many of my non-health care friends and family are completely unfamiliar with sara steadys and hoists, with thickened fluids and aspirations, with PEG tubes and BiPAPs. Not only do families have to learn all of this, they also have to learn what they need to learn and learn where to find this information and learn how to make sense of medical jargon. It’s a minefield!! Education as a cornerstone of quality health care is something I will always advocate for, and this is exactly why.

Thank you Robert for your grace as I learnt and being one of my greatest teachers. It is an honour to remember you and a privilege to fight for a cure on your behalf.    

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A bit about me

Monday 1st Jul hello!! i’m shell - an occupational therapist with a background in motor neurone disease care and a big passion for comprehensive palliative care. i have been so privileged with work with and care for clients with motor neurone disease and support their families as best i can all the way from diagnosis to end of life. this had lead me to see such powerful and urgent gaps in our health industry; access to timely funding for preventative allied health, knowledge on progression and prognosis, support programs for families, customised equipment for activity participation, and most importantly a cure. i have been running for a few years now and some parts help me understand how it may feel at times to have MND; the stiffness in the body, difficulty breathing, heavy levels of fatigue during the days, and missing out on other activities you love to do. i hope every kilometre i run is a chance to remember my wonderful patients and advocate for a end to MMD.  Share