Neale Daniher: Fighting to fund the cure

Neale Daniher

Canterbury, Victoria

 

Living with MND

Neale Daniher, AFL great now fighting Motor Neurone Disease (MND), is ready to open up further about the disease and disability. MND is a swift and merciless disease, and Neale is matter of fact about what has changed for him physically in that time.

‘I’m fortunate, my progression is quite slow. There hasn’t been a great deal of physical change over the last six months. I am weaker in my upper body and arms, but even though it is obvious to me it is not easily detectable to those who see me often. I’m lucky, my legs are still good’.

MND is not just one disease – it is a group of diseases that effect the motor neurones that control muscle movement. Some are more progressive than others, and symptoms, progression and survival time vary. Neale acknowledges this, and yet remains positive. He has the type of MND called progressive lower motor neurone disorder, which in his case is moving relatively slowly.

This joke has weight: as we speak in his living room, Neale’s wife Jan is raking the lawn in their backyard.‘They tell me progression tends to be relatively consistent, and mine is slow. And it is now possible to live beyond the average life expectancy, which is between two and five years. The upside is, with MND I get a free pass on nearly all of the family chores’.

Despite the joke, MND hasn’t slowed Neale down.

 

Fighting ‘the Beast’ MND

‘I personalise the disease, I call it the Beast’.

In early 2015 Neale became the Patron and Vice-President of the Cure for MND Foundation. He joined Chairman Dr Ian Davis, who also lives with MND, as well as Patrick Cunningham (whose wife Angela has MND) and Angus Twopenny.

They didn’t start, small, successfully pulling off the largest fundraiser for MND ever in Australia. The Big Freeze – where sporting greats and commentators plunged into a container of iced freezing water in front of the MCG crowd and live on TV – was to raise $250,000. They smashed this target, raising $2,411,800 since June.

By bringing in the AFL community and packing out the MCG, Cure MND has done what no one else could: they made ‘the Beast’ relevant. Neale gave it a face, a name, and got thousands of people doing something about it. This is no small feat. MND is not an easy disease to talk about: it is not easy to explain, it does not lend itself to a pink ribbon or yellow daffodil, and it kills all it touches.

And there is also Neale’s work with Brewmanity, a not-for-profit that donates 10 per cent of its profit from hand-crafted beers to the Cure for MND Foundation.Neale hasn’t stopped with the AFL community. In October he toured Victoria for Daniher’s Drive – a four day fundraising extravaganza that took him – as well as 200 people in 60 cars – along the Great Ocean Road to Warrnambool, through the Grampians, and on to Bendigo, the Murray River and Albury.

On Saturday 28 November the Cure for MND Foundation held its inaugural Gala Dinner, headlined by Kate Ceberano with an estimated $150,000 raised.

The goal is clear: more money for more MND research.

That is because one in 180 deaths (yes, you read that right: one in 180 deaths) in Australia are due to MND. That means you are likely to know someone who is diagnosed with and will likely die from MND.

 

Making the funding pie bigger for all

Neale and Cure for MND are all about making the funding pie bigger. Cure for MND has raised over $4 million this year (including what was raised through the Big Freeze). Given the voluntary basis of the organisation, the majority of funds raised go towards making the pie bigger – they are invested in researching the cure and caring for those already living with MND.

Neale is thankful the Commonwealth is increasing the total funding available through the National Health and Medical Research Council (NHMRC). He is the first to acknowledge there are plenty of diseases and conditions requiring urgent medical research. But he is adamant it is not enough.

In late November the Federal Government announced it is increasing funding for MND research in 2016 to $2.5 million, up from $2.3 million in 2015. But while this is an increase in dollar terms, it represents a smaller slice relative to the overall size of the pie. This is because in 2015, MND research received $2.3 million of the $420 million invested in medical research (around 0.5 per cent). In 2016, it will receive $2.5 million of the $760 million invested (around 0.3 per cent).

‘We now get less than half of one per cent of the funding distributed. If we are to beat the Beast, we need more than that. And that is why we created the Freeze Army. In just one year, we have almost doubled what is available to fight the Beast’.

In late November, Cure for MND donated $1.75 million to MND Australia. Combined with the $3.32 million contributed by MND Research Institute of Australia, this brings the total available for MND research to $5.07 million – greater than it has ever been.

On top of the $1.75 million for research, Cure MND is making available $1 million to Neuroscience Australia and similar Australian organisations to assist Australian trials of therapeutic drugs. The goal is to find a treatment that may slow down the Beast. This is a way to bring real hope to those living with MND, as any research success story will take years to reach the market.

Neale argues that more funding is needed to care and support those living with MND now. And by investing in therapeutic trials (most of which occur overseas with few in Australia), Cure MND is funding Australia’s best and brightest researchers and clinicians. However, funding trials is an expensive endeavour. More funding is needed to beat the Beast.

 

MND in Australia

  • Approximately 400,000 people live with MND around the world, with around 1,900 in Australia.
  • MND may be diagnosed at any age, although it most often effects people between 50 and 60 years of age, with more men diagnosed than women.
  • Each day in Australia an average of two people are diagnosed with MND and two people die from the disease.
  • The average life expectancy of someone with MND from diagnosis is between two and five years.
  • It cost an estimated $300,000 to care for someone with MND per year.
  • MND is also known as Amyotrophic Lateral Sclerosis (ALS, known best in relation to the Ice Bucket Challenge).

CURE FOR MND FOUNDATION

The Cure for MND Foundation is a 100 per cent not-for-profit foundation. The goal of the Foundation is to live in world free from MND. The aims are to:

  • To cure: By funding the best and brightest research within Australia to identify potential treatments.
  • To care: By providing vital equipment and services to those living with MND in order that they may maintain independence, dignity, and an improved quality of life.
  • To make aware: By increasing the public profile of the disease to encourage the Australian community, as well as the government and pharmaceutical companies to join the fight against MND.
Playing the numbers game

MND has a numbers problem.

Each day in Australia, an average of two people are diagnosed with MND. The catch is, an average of two people die from the disease each day.

The total number of those living with the disease isn’t going up, and this presents a challenge. How to make a convincing case to increase government funding?

Cure for MND has reached new heights attracting voluntary funding and donations, but securing greater government funding requires a different set of numbers: plenty of supportive voters or a killer business case, and preferably both.

I ask Neale how he feels about other successful campaigns to reduce and avoid deaths. For example, the Victorian Towards Zero campaign to reduce deaths on our roads from 249 in 2014 to zero, and national efforts to tackle lifestyle diseases such as Type 2 Diabetes.

Neale’s response is a reminder that he knows the public and remains a gentleman. ‘I don’t go down the road of comparisons. I’m not the only one suffering, and I don’t think people should only focus on my disease. That is why we are trying to build a larger pie – not take more from a smaller pie’.

But Neale does express his frustration.

He admits to being frustrated by the amount of waste in the health system, that appears to be built into the health system. He refers to the recent 4-Corners episode that investigated the way doctors feel pressured to over-diagnosis, saying ‘we waste billions through mismanagement and over-diagnosis, and then only give $2.5 million – only 0.3 per cent of available funding – to MND’.

And he admits being frustrated that preventable lifestyle diseases attract so much more research funding (though people can take measures to prevent them) than diseases that have no known cause, like MND. People don’t bring MND upon themselves, and when it strikes – and it can and does strike anyone – there are few measures they can take.

Neale’s point is that MND is here, it strikes one in every 180 people, and it kills. More funds are needed.

 

Thinking about the end

The majority of MND cases are sporadic, with no known cause. This means there is no identifiable reason why Neale’s body is failing him. The only thing Neale and his family can be sure of is that his body will fail.

‘I have sporadic MND – not the genetic kind. That gets my parents off the hook. And while I grew up on the farm, I left when I was still young and the doctors think it is doubtful my MND has anything to do with exposure to pesticides or toxins on the land. Until the doctors or researchers find out what causes MND, I’m not interested in speculating how I got it’.

‘I’m not at the stage where my wife has to cut up my food yet, although I’ll be fine with that when that day comes. But things are changing. It takes me longer to do things, and some things are becoming more difficult. I get others to tie up my shoes. And because my hands don’t work well anymore, I worry about some times and places. What if I were in a public toilet and couldn’t unlock the door?’

There can be little comfort in the fact that he has the slow-moving form of MND, for ‘slow-moving’ is a relative term. Stephen Hawking’s slow-moving ALS remains the outlier: most diagnosed with any form of the disease die between two and five years from diagnosis.

Neale takes Rilutek. It is the only drug currently available to have any impact on the course of MND. It may slow disease progression, and may prolong the average life of someone with MND by two to three months. But it does not come close to changing the end result. Neale’s life will end before his time. Neale is hopeful that the therapeutic trials that Cure MND are looking to support in 2016 may provide some new options for the treatment of MND.

I ask Neale his thoughts on Andrew Denton’s recent public commentary and current podcast series ‘Better off Dead’, where he explores the way we approach end-of-life care, assisted suicide and dying in Australia.

‘I saw Andrew Denton on Q&A. It was a good discussion. I’m not committed either way. I find that with these types of issues, the more they are brought out into the open and all arguments are presented, the better off society is’.

I ask about the practical realities that come with a diagnosis of MND. Wills. The different types of Power of Attorney. Decisions on end-of-life care. Neale looks less than impressed with these questions.

‘People think about death differently, and it is normal and natural to feel sad or sorry. But I think I am more emotionally fit if I focus on the short term. People who focus only on future outcomes miss the many opportunities for joy each day presents. I prefer to splash people today with hope and happiness. It is the way I go about things’.

Still, Neale answers my question forthrightly.

‘I have always had a will. As for the rest of it, I haven’t talked about my end-of-life care yet. It is yet to be done, and it will be, when the time is right. I’m comfortable with that. I don’t think there is any reason to talk about it prematurely. I’m not avoiding it, that time will come and I will confront it. But I don’t want it eating into my time now’.

 

Inspiring the rest of us

‘Our goal is to put the Cure for MND Foundation out of business. The Beast will keep laughing at us until we get more money. Beating the Beast is my motivation. I will fight it until I’m gone, and so the fight will continue without me’.

Neale is no stranger to the public spotlight. But this is the first time he has been interviewed by someone with yet another neurological disease that has no known cause and no current cure. There are many of us out there.

And to us, Neale is an example: not just of sporting prowess or how to fight a bastard of a disease, but on how to keep on living.

Surviving anorexia, depression and someone else’s suicide

 

Ashleigh Hill-Buxton

Collingwood, Victoria

Ashleigh is 25 years old. Petite, pretty and obviously a determined perfectionist, she is already an old soul. She overcame anorexia and completed one year of a degree in journalism, before dropping out of her second year when her ex-boyfriend took his own life. Two years later, she is building her first home.

 

Growing up with depression and anorexia

Mum is a family lawyer, and dad a truck driver. I am the eldest of their five children, with three brothers and one sister. I still live at home, but only until the house I am building is ready.

We were, and are, a happy family.

But I’ve always had depression and anxiety in me. As a teenager, I would sleep ten hours and wakeup tired with the world. I was formally diagnosed with depression back then, although I wasn’t medicated.

I have always been a perfectionist, and I was recognised as gifted in school. But in my quest for perfection and with my desire to be the best, I became anorexic. I stopped eating in my last year of school, after I fell out with my friendship group.

My mother helped me to seek treatment. At the end of that year she took a photo of me sitting on the beach. She took it from behind, and you can see every one of my vertebrae and most of my ribs. It is not a nice image. After that, my GP took me to a psych ward to show me where she would put me if I didn’t start to help myself. It worked. I slowly started to return to a healthy way of eating, and even now I feel lucky I recovered.

But anorexia is not the defining story of my life.

 

Surviving someone else's suicide

Dean died on 17 March 2013.

We first met in primary school, and then years later when I was 21 and he was 23. We had lost touch through our high school years when I went to a private secondary school and Dean to a public one. I knew he was nuts when we re-met, it was obvious. But it didn’t matter.

The thing that I loved, that I needed, was that Dean understood the darkness in me, the ugly parts of me. He understood the girl who had once chosen not to eat, the girl who felt the darkness in the world. I was drawn to him.

And Dean was good at love. Flowers, letters… He would have walked across broken glass for me. And he was fucking handsome. Blue eyes, muscles, scars galore. A smile that was both sad and happy... and that smile is how I knew he was broken.

Dean was a self-harmer, and he abused alcohol and drugs. He was diagnosed with depression and bipolar disorder, and took Effexor for the former and Seroquel for the later. He saw a counsellor a few times, but those sessions had little impact. He went for me, not himself. He preferred to fight his battles alone.

He became my world when I was with him. I wanted that, at first. I thought I could keep him afloat. But soon I was sucked down. Soon, it wasn’t my choice. He said he couldn’t exist without me, and I thought he might attempt suicide if I wasn’t there. He took over my life.

God, the battles that we had… I spent my time trying to fix him. I was hell bent on trying to save him from himself.

We were together for 18 months. Our song was ‘Wicked Game’ by Chris Isaak, and the lyrics tell you everything. ‘The world was on fire and no one could save me but you… I never dreamed that I’d lose someone like you’.

It was always tempestuous, and sometimes dangerous. The number of times I scrubbed blood out of the carpet... (Ashleigh shakes her head when she says this, remembering the practical reality of looking after someone who didn’t want to live).

Dean stayed away from substances when I was with him. I wouldn’t tolerate them. But when I was not there he went straight back to them. And so I watched him decline. By Christmas 2012 I realised the toll the relationship was having on me. I started to pull away.

At the end of January 2013 Dean slit his wrists in the bathtub because I wanted to sleep after an exhausting day at work instead of visiting him. He sent me a goodbye text, so I threw on some clothes (there was no time even for underwear) and drove to his house, calling 000, his mother, anyone on my way. We found him unconscious in the bathtub.

That was one of the toughest nights of my life. I accompanied him in the ambulance and to the hospital. He refused to be sedated or to let anyone stitch his wounds. He refused all help.

Dean spent more than three weeks in the hospital, and I visited everyday after work. I didn’t want to, but I felt I had to. And I came to hate my life. I knew I couldn’t help him and I needed to start helping myself.

Those close to me knew that before I did. My parents wanted me to distance myself from Dead long before I did. While they were sad to witness what was happening to Dean, they could see what it was costing me. At this point, my siblings and I had almost no relationship, and I wasn’t close to my dad either. My mum was at the end of her rope. Everyone was extremely concerned for my wellbeing.

I drove him home from hospital. At least, I tried to. In the car I told him that, now that he was out of hospital, our relationship needed to be on hold while he focused on his health. Dean tore open his bandages right there in the car, opening his half healed wounds. I turned the car around and drove him straight back to the hospital. But the hospital wouldn’t take him. So I took him to his father. Days later he ended up back in the hospital after more self harm.

His father called me and told me to stay away from his son. I agreed; I knew the relationship was toxic. Dean didn’t stop trying to contact me, but I didn’t respond. I needed to heal.

After he was discharged again, he ended up living at a friend’s mother’s house. His parents, who were divorced, couldn’t (or wouldn’t) look after him. His parents were divorced, and they had spent a lifetime looking after Dean. They were at breaking point… They didn’t know what to do with him.

One Friday he called and called and called until I answered. He told me to visit him. I said no. He threatened to jump in front of a train. I didn’t know what to do, so I hung up and I called both my mother and his. My mother took my phone away from me for the night. I understand why, she was trying to protect me. Dean kept texting throughout the following day, but I remained faithful to my mother and did not respond. I did, however, contact his friend and tell him to look out for Dean. The friend went to check on him, and reported back that he was ‘drunk but fine’.

I didn’t hear from Dean on Sunday, and I was surprised but pleased. I thought he might be coming out of it. But at 3:30pm that afternoon, Dean’s mother called. I was at work and I didn’t answer, but she kept calling. Then his father started calling. Eventually I went to the bathroom (we were not meant to take calls at our desks) and answered the call, and his mother’s partner said there was something they needed to tell me.

‘I’m really sorry that Dean has passed away’, he said.

I hung up. I lost it. I collapsed in the bathroom sobbing. My manager took me home, and I stayed in bed with my best friend and mother crying for the next two days.

At that point I didn’t know how Dean died, but I imagined it.

There was guilt. Profound guilt. He needed help, he needed saving. And I didn’t help him, I didn’t save him.

I later found out that Dean overdosed. At first they weren’t sure, as the scene looked suspicious. I had to talk to police and tell them what I knew. It was traumatic. The autopsy confirmed that he had taken 250 pills – Effexor and everything else he had around.

I have not spoken to the friend who deemed Dean ‘drunk but fine’ about it. There is nothing to say.

But I did speak at Dean’s funeral; I was determined to.

The funeral was terrible; funerals for young people are terrible. And no one really understood. His father came the closest, saying ‘Dean had a cancer in his mind’. Everyone else just kept referring to a ‘tragic accident’. But it wasn’t an accident, Dean took his own life. And although his absence causes other people pain, I think he is better off... Dean hated being alive.

 

Being an old soul in the adult world

Dean is dead. We buried him. But that doesn’t mean he is gone, and it definitely doesn’t mean the grief is gone.

Most people I knew had never liked Dean, and they didn’t understand my grief and why I mourned him. They thought he met the end of the path that he had so obviously chosen.

And that is when I started to battle for my own life.

I flirted with death. I thought about dying… I imagined myself in a train wreck. I imagined driving my car onto train tracks, or jumping in front of a train when I was waiting to catch one to work. I just lost the will to live. I had suicide ideation, but I wasn’t suicidal. Suicide means an active wish to die. I was more passive… I just didn’t want to live anymore.

My relationships with other people, including my siblings, went downhill. My mother pushed for me to see a psychiatrist and to take medication. She was convinced there was something wrong with me, and I started to think so too. And so after Dean died I took Prozac for a year.

There is a difference between grief and depression. But for a while I was a mess of both, all mixed up together. I was angry that people didn’t understand – I was broken. To this day people hold that time when I was angry and sad against me. The biggest problem people had with me was my lack of filter. I just didn’t care about the little things anymore; the polite pleasantries we are all supposed to conform to. I didn’t have the energy. Even today, I rarely have the patience for them.

The death of someone young is different. There is depression and grief, of course. But there is also a feeling of injustice, of someone gone too soon…

But the death of someone you loved intimately is different too, someone you loved and tried to save. I grieved for Dean, I grieved for our relationship, and for what might have been. But I also grieved for my failure to save Dean, for the fact that I was still here and Dean wasn’t. For the fact that no one could have saved Dean except himself, and he didn’t want to. And I felt guilt. For there is a guilt to surviving, to being the one left alive.

Seeing the psychiatrist didn’t help, and ultimately the drugs didn’t either (although I think the fact that I went along with what the medical profession has to offer gave other people comfort).

Instead, I learned to help myself. I take joy in the little things these days – I cook, I exercise, I read, and I spend time with my friends, especially Liana. The day I realised that the friends who had stuck by me were true friends was wonderful. Liana is my best friend, but more like an older sister. I can’t imagine my life without her. She is one of the few to understand why I am still sad, and why I still need to talk about it.

And that is what brought me back to where I am now. I collect happy moments, and I don’t focus on what is in my head.

And perhaps most importantly, I acknowledge what has come before. I live by this Lemony Snicket quote: What happens in a certain place can stain your feelings for that location, just as ink can stain a white sheet. You can wash it, and wash it, and still never forget what has transpired – a word which here means 'happened, and made everybody sad’.

I still think about Dean. He is the ink stain on my white sheet. The pain has passed, but the memory remains. People think that the door of that chapter of my life is closed, but that door is warped now… It will never close fully. I have had no contact with Dean’s family. Our contact ended naturally. I think they know I still visit his grave.

I stopped taking the drugs a while ago. My mum doesn’t know I am not medicated… She will find out when she reads this interview. I told my grandmother a few weeks ago. And I hope my family knows I would never put my them through what Dean put his through.

I think the question of whether to take medication is a personal one. For me, medication is only a temporary solution to a lifelong problem. And so I am trying to live my life with a lifelong solution. I was anorexic as a teenager, and depressed as a young adult. I need to find the right path for me.

My new partner, Kinsleigh, is seven years older. He works at the bank too, and when we met I told him I was fucked up… But he still thought I was cute. He had a rough start to life and has a maturity that I crave. His sister committed suicide nine year ago, and so he understands. He sees the dark in me, and for that I am grateful. He just lets me be.

Kinsleigh’s birthday is 17 March… the anniversary of Dean’s death. And so I have come to terms with the fact that Dean will always be with me. Everything he did made sure of that, although I sometimes wish he hadn’t.

 

Where I am going now

Like all good things, I am a work in progress.

I am beginning to understand that just because this happened to me doesn’t mean I am worth less.

For anyone feeling like I did, I want to let you know that you shouldn’t be afraid to let people know you are back to your old self, or not, as the case may be. Because an experience like mine, it stays with you.  My time with Dean is a part of me. To have never experienced that time… I would not take it back.

As for the future… I love Kinsleigh. But if I have children, they might end up like me. And that is ok. Because I will teach them that they can come out the other side. Just like I did: I am now a functioning adult, and I do adult things (she says, laughing).

I would like to finish my degree, but there is no time. I am building my first home from scratch... But in the future, yes, I would like to go back to university.

The good thing about my story is that I have come out the other side. It is possible. I now have mental strength that many people don’t have, and my perspective is different, because I know how real, how permanent, loss can be.

And I understand that I have a choice, we all do. It took me a while, but I chose to live.

Living and training with ulcerative colitis

Kane Picken

Elderslie, New South Wales

Kane is 35 years old. He is a husband, father, son and athlete. At 31, he was diagnosed with ulcerative colitis. Even though he looks healthy, the disease fundamentally changes his life – adding pressure to relationships and limiting daily activities, sometimes to the point of being unable to leave the house.

 

Falling sick the first time

I was living in Toronto in Canada with my wife, Diana, and training hard for the Louisville IRONMAN. It happened all at once, it just came over me. I’d gone out for a run on the trails, and all of a sudden I needed to go to the bathroom. So I did, right then and there in the bush. There was blood.

I lived with it for a few weeks, dealing with it myself. I didn’t really want to engage with it. I was a fit guy training for triathlon. I didn’t feel – or look – sick. But a pain started in my left side and it didn’t stop. Finally, I told Diana that I needed to go to the hospital.

Diana’s best friend worked at the hospital and fast-tracked me through. They did a bunch of tests, and I was diagnosed with ulcerative colitis that night. They gave me pain relief and told me that in addition to the colitis, I was dehydrated from the training. They then told me to taper back my training, which I didn’t like.

I recovered, and I thought I could still do Louisville. I had been training for it, after all. One day when the temperature was high – too high to work outside – my employer sent us all home. So I went for a run. But as I was running I realised that I was overheating and I couldn’t train properly. Later, at home, I grew cold (even in the 40C heat). I was hallucinating by the next morning, and by lunchtime I knew I needed to go to the hospital.

They told me I was severely dehydrated again. Then they put me in the ICU. I had a pipe in every hole: a catheter, tubes, needles. They said I was at risk of organ failure, and they thought I was dying. I even got rigors and was shaking off the table. At no point did I think I was dying, although the rigors were doing my head in. Because of them, I couldn’t even lie still for the scans.

I stayed in intensive care for two days, and in hospital for a week. I am a fit man, with a resting heart rate of 50. To this day they don’t know what happened to me. They told me I am a medical anomaly; they even wrote about my case.

Still, the doctor said it was all my fault, that I shouldn’t have been training. That was a big turnaround for me. I was fit, I had done triathlons before and I was training for an IRONMAN.

And colitis isn’t my fault.

There is no known cause or cure for ulcerative colitis (or Crohn’s disease, which it is similar to). But I think stress plays a part, at least it did for me. When I first got sick I was stressed: I was training hard and living in a country I didn’t want to be in. And maybe it has something to do with genetics as well. My cousin has IBS, and my grandmother died of complications with her bowel.

 

Learning to live with it

I never even knew what ulcerative colitis was until I had it. Apparently it hits males at around 30 or 50. I was diagnosed at 31, right on the money.

I can tell some good war stories. Actually, I have some disgusting stories to tell. My younger sisters cringe. But unless I bring it up, colitis isn’t a topic we talk about. I don’t think it is because anyone is embarrassed, I think it is because they feel sorry for me. I don’t like that.

And it helps me if I can tell them the truth, that I had to run to the car today and shit in a box.

It is always the worst in the morning, but the morning is when I train. That has meant some pretty bad moments. When I was younger I was pretentious. If I was this sick then, I would have necked myself. Now, I’m used to it. I’ll shit anywhere. I’ve lost count of how many times I’ve shit myself – this year has been hard for that. We’ve had to buy a port-a-loo, and I wear nappies. It isn’t pretty.

I know I have a chronic disease, but I really could do with less shit.

 

Taking the meds

I’ve had all sorts of drugs. I hate prednisone, I think it is a cop out drug. It has ruined my teeth. I’ve also had hydrocortisone.

At this point I feel obligated to disclose to Kane that I carry a prednisone script in my handbag. My neurologist gave it to me after an unfortunate trip to the emergency department for an MS relapse, and I now don’t go anywhere without it. Kane does not look impressed.

I want to be med free. As a kid, I didn’t even want to take Panadol. But I have been in a flare since November 2014, and so there are still drugs.

I receive Remicade via intravenous injection to put the disease into remission. Deciding to try that was a big decision. I previously took a similar drug, but it didn’t work for me. When taking that I could barely walk, I had to crawl instead the pain was so bad. Remicade is a new drug, with only a few years’ research behind it. But the real problem is that if you stop and start taking it, it doesn’t work. That means I will be having an injection every month for the rest of my life, although my doctor said I might be able to move it to every six weeks.

Hospitals make me anxious, being locked up in there is a nightmare. But I believe in doctors. They have helped me – but only the ones that treat the person, and don’t just do whatever a textbook says to do. My doctor has done a phenomenal job with me. I feel looked after.

And so I take the medication she prescribes, but is frustrating. Taking medication reminds you that you are sick. At the moment I take seven different medications. Some of them are up my arse. It isn’t fun.

I saw a naturopath. I believed in everything he said, but I was too sick at the time for what he had to offer to help. Still, I think the more natural stuff I take the better off I will be.

I watch what I eat too, I know what makes me sick. Beer was a side passion of mine, but now I am doing myself no favours if I drink it. It is hard to give up, like so many other things.

 

Looking after myself

The guys say to me that I look fine. And when I look at myself in the mirror, I do look fine. Even with this flare, I tell people I am at 85 percent, that I am healthy. I am well enough to train, and well enough to work. But it is hard.

At the moment, the hardest part is the urgency. If I’ve got to go, I have to go. Right there.

I’ve had all sorts of tests, including a sigmoidoscopy, where they insert a camera to take a look around. The tests are physically invasive, they require an enema first, and I end up having to take the day off work. I love the anaesthetic though. I’m almost addicted to that part, when there is no control and no pain.

I was diagnosed in Canada, but we moved back to Australia because I was unhappy there. The weather, my job, and of course the colitis. I think our quality of life is better here, although my current job doesn’t give me the satisfaction that I thought it would.

Everyone thinks it is my training that is making me sick. It isn’t, I can tell. My health has improved since I started training. Sure, you can overdo training sometimes. But for me, it helps. My intention is not just to do it; it is to win. I’m competitive, and people around me know that. And the training is good for my mental health, it is how I manage stress. My dad can attest to that – if we don’t do our training we get antsy. Years ago my dad took me for my first adventure race at Oberon, and after that I could smile again. I then did a novice triathlon, and I was hooked. It is addictive.

With the colitis, I’ve tried to get away from triathlon. I played cricket for a season in nappies. But I was so worried about needing to go in the middle of the cricket field I couldn’t concentrate. It was the worst season I ever played. I was wearing white, for Gods sake. And out there you have time to think. Thank god it never happened on the field.

I read Beyond Training by Ben Greenfield. It has helped me to just get on with everything.

You know, I lost another pair of underwear this morning. It just happens. But for the rest of the run I was fine. People shit themselves all the time in IRONMAN. I’ll just be one of the boys. But I don’t even think about it during a race. I think it is the adrenalin – it overcomes the urge to go.

 

Thinking about my family

My son Dante is three years old. Having him is where it all changed for me. I didn’t fear death until I became a father. With Dante, I feel a sense of responsibility, he is so precious.
And I don’t want Dante to have colitis. I’d feel 100 per cent guilty if it ever happened to him.

I feel bad for Diana that she is so close to her Canadian family, and I brought her to the other side of the word. I just wasn’t happy in Canada. I couldn’t make money there, as carpenters don’t work in the winter because it is too cold. Diana works hard here, and the long hours and my limited activities does impact our family life. I wish we had dinner together as a family each night. I get to eat with Dante, but Diana often isn’t home.

I often shake my head and wonder what I did to deserve this. I don’t want to become a burden. I’m glad I am the one that got sick, I don’t think I could handle it if I couldn’t help Dante or Diana. It is easier to deal with it myself. But things do get to me. Like the colitis. I fight back, but it is hard. I can be angry, even though I don’t often show emotion.

The biggest thing for me is that I don’t want anyone to feel sorry for me. I don’t need it, and I don’t want it. Even though people don’t realise how sick I am, I can still compete against healthy athletes.

I always think of my family when I am out riding or running. And I wonder what I would be like if I wasn’t sick. But I have to keep pushing forward, I think that is how to live my life.

 

Planning for the future

Last time I was there they raised the idea of removing my large intestine and inserting a j-pouch (otherwise known as an ileal pouch-anal anastomosis). A j-pouch would connect my small intestine to my rectum and I could control my stool. It could be that, or a colostomy bag on my abdomen. That would get rid of the colitis. But it would have its own problems.

I’d rather just continue as I am now. I’d rather be dead than have a bag. I can’t picture myself living with a bag on me. I’m not embarrassed – I just don’t want it. I refuse, I just can’t see it happening. People think the j-pouch will improve my quality of life. But for me, it will just change one problem for another. I just don’t see it happening.

The thing is, until you get sick, you don’t appreciate life. I look back and I think it was all pretty easy, until colitis turned my life upside down. Now I don’t take anything for granted.

There have been other issues to. In April the doctors found polyps. I’ve never been scared before, but I was scared then. Polyps can be cancerous. If they ever find more there, or there is something wrong with them, I want them cut them out. It was nerve-wracking… they took photos of my insides. But I had another sigmoidoscopy in October and the results were good: the polyps are not cancerous and there is improvement with the colitis.

And so I’m in training again. I’m aiming Western Sydney 70.3 this weekend (a half IRONMAN), and I’m on track to make the start of IRONMAN New Zealand in March 2016.

I’m determined. To this day I have never been well enough to make the start of an IRONMAN. But I picture myself running down that final IRONMAN strip. It has eluded me so far, but I will get there. Maybe even to KONA. I’m going to get there if it kills me.

Anyway, I don’t feel that I will die. But maybe that is because I just do what I need to to get through each day.

After interviewing Kane I look up his medication, Remicade. Is decreases the ability of his immune system to fight infections (like Gilenya, my own medication for Multiple Sclerosis). The list of potential side effects is long and depressing, and includes infections such as tuberculosis and developing lymphoma or other forms of cancer.

Living with MND on the other side of the world

 

Frank Lyons

Rozelle, New South Wales

Frank is almost 63. He was diagnosed with Motor Neuron Disease (MND, or known outside of Australia as ALS) a year ago. Born in Scotland, he has been married to his childhood sweetheart Rae for 41 years. Frank can no longer speak well, and he emailed me his background before we met at his house. He now uses an iPad and app to communicate, facilitated by his wife.

 

Moving to Australia

Frank: I was born in Scotland in 1952, the eldest of five children. My sister moved to Australia in 1981, and my daughter in 2006. I have other Australian relatives from my great grandmother, who emigrated to Australia in 1925. And so I always wanted to come to Australia.

In 2007, Rae and I were sponsored to work in Australia. While we did not expect to stay permanently, we have been very happy living here. My daughter Ruth lives close by. But Scotland will always be home. My son still lives there, and we returned last year for his wedding. But now, with MND, we are planning a final trip there in March 2016.

 

Being diagnosed with MND

Frank: Not a lot of people know about MND in Australia. It is a little better understood in Scotland, where prominent football players have been diagnosed with the disease.

My symptoms appeared in late 2013, when I first experienced a slurring of my speech and had difficulty swallowing. Soon afterwards a neurologist told me that I had had a minor stroke. I saw a speech therapist, but after several months there was no improvement and I started to lose weight. I then saw a new doctor, and he referred me to the Brain and Mind Institute at the University of Sydney. 

Frank and I are sitting on the couch, and Rae sits on a free floating chair. Frank is propped up in the corner of the couch, his iPad on his lap. He is positioned to look at both Rae and I, but he can choose to gaze at the spectacular view of Parramatta River. He does so as Rae starts to speak.

Rae: I knew Frank was ill. We went to see the Archibald Prize in August 2014, and I could see by his stance – his posture looked curved – there was something wrong. I thought it might be Parkinson’s disease or Multiple Sclerosis… I never thought it could be MND. It was a shock.

Frank: We do not know what causes MND, but I think stress played a role. The final six months of 2013 were overwhelming. I found out my brother had cancer, and Rae and I returned to the United Kingdom in October 2013 to support him – a year before I was diagnosed and around the time I started showing symptoms. Also in the same month I found out that I would be retrenched before Christmas. My brother then passed away in December. I was, however, then lucky to start with my current and very supportive employer, in April 2014.

When told the diagnosis in September 2014, we were about to return to Scotland for my son’s wedding. My doctor later admitted that he nearly didn’t tell me the diagnosis before we left. But confirming the diagnosis gave me the chance to tell my children. It was such a struggle to have to tell them. We did not tell anyone else until after the wedding, but many friends could see that there was something wrong.

After the diagnosis, the only thing I could think of was that 90 per cent of people with MND last between two and five years. I felt like giving up. I told my wife that ‘we are going home’. I suppose I took the same view as my brother had when it became clear that his chemotherapy was not working: he stopped treatment to spend his final time with his family.

 

Adapting to life with MND

I have had consistent and helpful support in the year since my diagnosis. The family is no stranger to neurological disease and movement disorders – my daughter-in-law Hannah has Fibromyalgia, my ex brother-in-law has Multiple Sclerosis, and I have two cousins and an aunt with Cerebral Palsy. And I was given clear support and advice on how to live with MND at the Brain and Mind Institute.

But I struggled to listen. I was in shock; maybe I still am. My wife and I have never experienced any major illness, and there is nothing I can do to get back to how I was. I am challenged by the necessity of adapting to a new lifestyle and taking new medications. Sometimes I agree to try a new drug or a new way, but then I give up. The deterioration of my speech, combined with my difficulty swallowing, lack of appetite and large weight loss, at times make me question why am I doing this. Nothing will actually make me better.

Frank is emotional, and this makes it more difficult for me to understand. Much of this interview is in Frank’s own words, but words emailed to me before I met him. I have used these words to fill in the story he told me in person.

At this point, I decide to ask their thoughts on the Australian healthcare system, which they are now intimately acquainted with.

Frank: I see my neurologist every three months, and I have a clinical nurse Margie on call if we need her. She is always available, and has great knowledge and empathy. I have never been admitted to hospital, I have always been a day patient.

Rae: It has been hard navigating a new system – it is not what we are used to, and we have no background knowledge. We have found the Australian system to be confusing, especially the difference between public and private. We have private healthcare, but we often feel that we pay more for no extra care or service. We have learned to call and ask for help. Looking back, I think we left it too long before we asked for help, that was the result of our confusion understanding who to talk to and what the process was.

Now we receive support from palliative care, community care and occupational therapist, with speech therapist, dietician, respiratory care through the MND clinic. At first, we always had different people coming to our home to help, and there was no consistency. Now we have a permanent person, who comes once a month, and it is better.

Frank: I have technology to help me speak, which is good, but it is not the same as talking. This just depresses me at times. I take many medications, including Rilutek, which is the main medication for MND (and in Australia is available through the Pharmaceutical Benefits Scheme). I also take medication to manage my saliva management, hypertension and blood flow.

I have a PEG tube (I later looked this up. PEG stands for Percutaneous endoscopic gastrostomy, and refers to a feeding tube in the abdomen, used when oral feeding is no longer an option) as I can no longer swallow. I had lost a great deal of weight, and cannot eat much more than soft eggs, soup and liquefied food. The new protein I use in my PEG has enabled me to put some weight back on.

I have a B Pap machine to assist my breathing at night and an electric pillow lifter, as I can no longer lie down. Rae and I no longer sleep in the same bed together... there is simply not enough space for Rae to sleep comfortably.

Rae: I think Frank could eat a little more than he does, but he chooses not to. It is psychological. He chooses not to use the thickener that is added to water to help him swallow. I know he stays hydrated through the PEG tube… but I miss the company at the dinner table. Being able to try new food and cooking together was a real pleasure. It is another part of our life that we have lost.

Frank: MND is more variable than I thought possible, and no one else experiences it in the same way. For me, it is hard to eat. I don’t want to. It is depressing.

The first time I couldn’t swallow it was very scary. It happened in the middle of the night, and I could barely breathe. I don’t like going to restaurants any more either. I can’t eat the food – I’ve had to spit it out in the past – and I have no appetite. And I can no longer enjoy a Guinness or a gin and tonic.

Not being able to speak is exhausting. I can use the iPad, but it is not the same. MND NSW has free communications apps to help people communicate. The artificial voice sounds robotic, but if you upgrade and pay you can choose the accent that speaks, although there is not a Scottish one! But it helps me at work, and in this interview. I can pre-program questions and comments.

Rae: I miss Frank’s voice. We could have recorded Frank’s voice and programmed that into the app, but now we can’t. When he still had his voice we didn’t know what we would need.

We have engaged with MND NSW. We attended an information evening, but at that stage we both felt we were not ready to face up to things.

We are usually always together when we leave the house. We no longer walk, we drive everywhere, and we have a disability parking permit. Frank has to wear a collar to keep his neck up, but that creates its own problems, as it restricts his breathing and swallowing so he sees no reason to go out. It is a catch-22. We found a collar with a new, experimental design from a university in the United Kingdom, but it has not been able to get enough funding to be made yet.

Frank: It affects the family as well. My daughter, Ruth, is very strong, very independent. She doesn’t say much about MND, or the future. She talks about how to manage on a day to day basis, but none of us talk about the future. She has other stresses in her life as well. Her partner’s mother has cancer, and he is living overseas to care for his mother at the moment. Ruth has a lot to deal with.

Rae: Frank was feeling very low earlier this year. Depressed, and maybe angry. He has never been the type of man to show his anger or argue back before… although now he can’t physically argue back anyway. Francis and our daughter-in-law Hannah flew in from Scotland to surprise Frank in July. It was beautiful.

 

Planning for the future

Frank: People expect me to be in a wheelchair, but I still work part time. My employer has been fantastic in many ways. They pay for a return cab each day so I can make it to the office. When I was first diagnosed I emailed everyone in the office. One colleague told me that she had a relative with MND. In hindsight, working for this employer has been a good outcome.

But even though I have this support, I will be retiring given my condition.

People have a negative perception of MND. I am normally a positive person: you can’t just sit in the dark the entire time. But there are dark days. I get frustrated. I think that is selfish. But living with MND is hard. I have no motivation to do anything, and although I know that is so hard on Rae, I struggle to change. They say only one per cent of people with MND live for ten years.

My life is at an end, but it has been a good one.

I ask if their roles have changed since MND entered their lives. Rae laughs.

Rae: As far as home goes, I do everything. I know Frank keeps most of his energy for work, but I get very frustrated when he does not even make a cup of tea. Frank could make an effort to do more, and people tell him to try and plan, but Frank does not recognise the need, he thinks ‘why bother’.

I do tend to nag him but call it ‘tough love’. I try to motivate him. But he has said many times ‘I just don’t want to be here’. Before he got the PEG fitted he wasn’t eating and we had a constant battle of wills. I once asked him if he was deliberately not eating as I knew he just wanted to fade away. His reply was an emphatic ‘no!’.

People have dropped away. All of a sudden, they don’t call anymore. Frank can’t talk anymore. And there are other ways, like email and text message. I am a member of a women’s fitness club and I am very fortunate to have made friends, which is a great outlet and they are all very supportive. This helps me immensely.

This is clearly distressing for both Rae and Frank. This brings them both close to tears, and I admit, myself as well.

Frank: Rae and I, we had planned to retire and travel. But I just want to go home now, to Scotland. Rae wants to stay in Australia.

Frank stops at this point. Perhaps he has nothing to say, or perhaps there is nothing to say for a man whose body – but not mind – is failing him.

Rae: We don’t talk about the future. There is no cure, so we focus on managing each day. But we have to look at the dark side. We need to talk about a carer’s plan, our future lifestyle, and Frank’s wishes.

I was offered carer’s support, but I am not ready. Perhaps in the future I will be.

Frank: I do not want to think about what will happen when I get worse. Even going home to Scotland is a challenge, I have to consider whether I should give up the lifestyle I have in Australia, even though it is expensive. 

My attitude puts stress on my wife and daughter, I always put myself first. While I have had to change my lifestyle to assist me, and I have the support to continue to do that, it is still a challenge. I have a terminal illness for which there is, at this stage, no cure. I have to deal with it, but I am trying to do it my own way.

The continuing decline is the biggest challenge. Rae and I adapt, but sometimes I struggle. Physically, I know I am what I am, but emotionally, I just want to go back to the way I was.

I want to go back to who I was.

Frank and Rae hug me when I leave. They do not have many friends here as most are back in Scotland. I think they enjoyed my company, even though I am a stranger.

Coming to terms with Parkinson’s disease

 

Rob Miller

Burwood, New South Wales

Rob was diagnosed with Parkinsons disease in 2010, when he was 49. He is now 54 and adapting to life with the disease. He has been married to Philippa since 1988 and they have three boys. When he opens the door and welcomes me into his house, I notice that he displays two signs of Parkinsons disease a rigid walk and masked expression.

 

The thing about Parkinsons disease

The thing about Parkinson’s disease is that you are unlikely to be aware that you have the disease for a long time, after the neuro-degeneration has well and truly begun. Not that anything can be done to halt the disease. The thief in the night!

Occasionally my left arm would shake during exercise. I mentioned this to a friend and he mentioned it to his wife, who happened to be a doctor. She sent me straight to a neurologist.

I had no idea that the the neurologist would tell me I have Parkinson’s disease. It was a shock. I was hoping there was nothing wrong, or at least, it was something less sinister.

I went to the morning appointment alone, and I was tying my shoelaces at the end of the examination when the neurologist told me. It was an ‘oh’ moment. But I continued about my day, it didn’t occur to me to change my schedule. I’m a lone wolf in that way, I just do what needs to be done. The news didn’t start to hit home until that afternoon. I felt confronted. Frightened. Alone.

Philippa knew about the appointment, but had to work that day. I hadn’t told my children. I’d simply put the appointment in my diary and turned up when I was supposed to. Philippa came to subsequent appointments. At those appointments we always talked about controlling the symptoms, but never about my prognosis.

Parkinson’s disease is a movement disorder and is linked to greatly reduced levels of dopamine being produced by the brain. As there are no tests to definitively diagnose the disease, other alternative diagnoses need to be ruled out. This can be difficult, as some symptoms can be confused with being tired or ageing.

I do take drugs, but the more they are used over time the less effective they become. I take a dopamine agonist Pramipexole which mimics the effect of dopamine produced by my brain. One of the potential side effects is compulsive behaviour, including hyper sexuality. I haven’t experienced that, unfortunately (he said, laughing), but my neurologist still asks whether I have every time I see him. I also take Levodopa, an artificial dopamine.

 

The impact on my work

I told two close friends, Andrew and Chris, before anyone else outside the immediate family. I just blurted it out at dinner one night, about a month after the diagnosis. Their reactions were quite touching. They were shocked, of course, as well as supportive. But the basis or our friendship is our friendship – not the fact that I have Parkinson’s Disease. I think they are looking out for me without being obvious. They judge how and when to bring it up, and they take their cue from me as to whether I want to talk about it or not. I tend not to bring it up, it is just the way I am. I think this is something for me to deal with and no one else.

I then informed my fellow Principals at the firm of my diagnosis a short time later, and even made a joke that the Parkinson’s would play havoc with my putting. My news, and my attempt at humour, were met with a respectful silence. I think it is because of the nature of the disease… people don’t understand. If you say you have terminal cancer, well, everyone knows that doesn’t end happily. But a neurological disease? Few people know what it means.

The first concrete decision I came to was to work less. I was a patent attorney. It was a perfect career for me, a marriage between writing, engineering and law. But I began to experience difficulties performing my work to the standard I was used to, and it was clear that work would only become more difficult.

I moved to a four-day work week, and there was a definite winding down. I became selective about the clients I dealt with and the projects I worked on. I took Wednesdays off, and it was a joyous day I looked forward to each week. I went for walks, I played golf, I explored parts of Sydney that I hadn’t seen. It was great fun, and quite rewarding and therapeutic.

A little over a year ago, I decided to cease work altogether. I went from four days to none at all. I realised that the time had come. It was becoming difficult to concentrate at work, and sometimes clients and colleagues would ask if I was alright. It was perfectly clear that I wasn’t capable of doing the work I once had, and this caused me a great deal of anxiety.

And so I left. I went cold turkey; I chose not to keep up contact. I think that once you have left, you have left.

I threw myself into renovating our beach house. The renovations had been going on for a while, but I became more engaged in the process. It felt like I was on holidays. But in the months after that, when everyone went back to school and to work that feeling ended. My wife and I agreed that it was my turn to do the household chores and all that she had done before. I took on a more domestic role, and I even took a few cooking lessons.

But as this year has worn on, I have begun to miss the adult world. I’ve taken up playing bridge. It is an intellectual game, and I like that. Exercise is my constant companion, and I enjoy the occasional trip away with a buddy. But keeping myself occupied and engaged is an issue that is increasingly demanding my attention. I know I have to keep the intellectual side up, and playing bridge is not enough. Next year I might take up a short course of study, maybe something in the humanities.

 

The impact on my family

I decided that work was the only thing that would change, everything else would continue as normal. I have three boys. Telling them was a bit haphazard, actually, but the diagnosis wasn’t hidden away. We just didn’t talk about it often. The boys kept their feelings to themselves. We did start a running joke at the dinner table. I would say ‘pull my arm’ when it was tingling or feeling wrong, and they would.

But my approach drives my wife crazy. At the beginning it was difficult for her. She wanted to talk to her friends about it – I think that was part of her way of coping. But I preferred to keep it to myself while I was still processing what it meant. Still, the world didn’t collapse around us, and we continue on. I see a Stoic practicality in her reaction, and her Scottish Presbyterian heritage means she makes the best of it and cracks on.

That has been my take on it as well. I think life is business as usual. I get on with it – I take the medication, I exercise, and I do what needs to be done. But I have to recognise that there are some things that I can no longer do, and some things that take me longer to do. Writing by hand is now very difficult, as are doing up buttons and tying my shoelaces. Basically, my fine motor skills are shot to pieces. Still, I try to be as normal as I would otherwise be. I can still drive, I can even still ski.

 

How I feel now

I experience fatigue. Some days are not as good as other days, and I have to take a day to recover. For me, I think exercise is the key. I work with a personal trainer, who I count as a good friend, three days a week. It is integral to the way I manage this disease and it is vital to controlling my symptoms. If I don’t exercise I get stuck in a Parkinson’s spiral of stalling and freezing up.

Things take me longer these days. I am always the last one out the door. And I am slow at the household chores – peeling potatoes, folding the washing. These are mundane things, and it is frustrating that I can’t get through such simple tasks.

My wife has engaged a bit with Parkinson’s Australia. There is a bit of literature around the house, but I never read it. She finds the disease very frustrating. I think it must be frustrating for the partners of people with diseases like Parkinson’s. No one can be understanding and accommodating to another person’s needs and changes to their health all of the time.

I’ve avoided being involved in any Parkinson’s organisations. I don’t feel that I need support groups, I think I am functioning fairly normally. If I went, I would meet people whose condition is more advanced than mine, and I wouldn’t like that. I see that every time I go to the hospital clinic. The fact that there is a service out there is great, but it isn’t for everyone. I suppose there is an element of denial in that: I don’t want that future for myself, and I don’t want to be reminded that it can happen.

But maybe I am missing out. I recently made a discovery: fat-barrelled pens are easier for me to write with. That is apparently well known by the occupational therapists in the Parkinson’s community, but I didn’t know.

I haven’t bothered looking at the medical research either. It would be easy – Michael J. Fox has Parkinson’s disease and his Foundation’s website has information galore. But I don’t want to spend my days looking up the next miracle drug. It is probably part of my coping mechanism; I’m just not interested in knowing a lot about it.

I have a few friends with other chronic disease. A lady down the road has MS. Her disease has progressed much further than mine in terms of mobility, which is difficult for me to see. But she gives me a hug every time she sees me. We have an affinity, of a sort. Our brains are alike.

 

What I will do next

I am in a fortunate situation. I am reasonably well-off, and the change to my abilities is slow.

But I do notice incremental things. I am more and more clumsy. I haven’t really explained my condition to people, but word gets around. I find that people are supportive at social events. If I need to I ask for help – for example, I can’t carry more than one drink in each hand anymore – people are accommodating. They take their cue from me. In the main, I haven’t noticed that people treat me differently. But maybe they do in subtle ways, and I am just not aware. I don’t blame them – Parkinson’s is not a well-understood disease. In that way it is similar to Chronic Fatigue and Multiple Sclerosis.

My current goal is to support my youngest finish school and fly solo. 2016 will be his final year at school, and I intend to be there for him as much as he wants and needs.

After that, I’d like to spend chunks of time at the beach house. It is restorative and therapeutic. I can rest there. But my wife has a new, demanding job. She is enjoying the challenge, and has no intention of cutting back. Nor do I expect her to. We have yet to completely reconcile the two positions – where I am retired and she is still engaged in the workforce.

I’m sympathetic to how a disease like Parkinson’s impacts on partners. How do they cope? Do they feel cheated, as if they didn’t get what they signed up for? A disease like Parkinson’s must impact them. I am trying to understand, and I would like to talk more about it to understand more deeply.

My imperatives remain the same: to exercise, to find intellectual engagement, to engage with the adult world. But the future is unknown. I often joke that I haven’t planned beyond tomorrow.

I know I am hedging around the ultimate question – how does my life with this disease end up? My neurologist is helpful in this regard. He reminds me that the disease is slow moving, and I should worry more about co-morbidities, which are more likely to do me in. Deep down, I carry that thought with me.

There is something in me that says to spend more time at the beach house or travel sooner rather than later, to enjoy this time while my health is this good. For I know it may get harder. But I also know there are people out there with far worse conditions than I have. Even though I don’t think I have been let off lightly, I know it could be worse.

And so I try to remain upbeat. I don’t feel sorry for myself, and I don’t think I am depressed. The most common emotions I feel are anxiety and frustration. I don’t want to lose what I still have, like the ability to drive and to ski. If I were to lose them, I would become melancholy, and maybe I would need treatment. But I will meet those challenges when and if they come. They do not occupy my thoughts everyday.

This talking has helped my thinking a bit. It reminds me of the role of talking. I’m looking forward to reading, and maybe sharing, it.

Life after pancreatic cancer

 

Barbara Riddell

Kiama, New South Wales

Barbara is 63 years old. I know her as a family friend – her daughter and my sister are school friends – but not intimately. She has always lived with Irritable Bowel Syndrome and had her gall bladder removed at age 37. In 2013 she was diagnosed with two primary cancers – one in her pancreas and another in her kidney. As a result of treatment, she is now a type 1 diabetic. Barb does not travel far from home, and so we meet at her coastal home in Kiama, New South Wales.

 

There was only three weeks between my diagnosis and the first operation. Worried by a test result from a CT scan, my GP called me at work and told me to leave immediately and have another CT scan. Two days later I found myself sitting in what would become an all too familiar oncology office. The outlook was grim. I had emergency surgery the next morning (a pancreaticoduodenectomy, otherwise known as Whipple's procedure), where they found a 5cm tumour on my pancreas and another in my left kidney.

My life as I knew it was over. I could not return to work. My husband Ken took three months off. Our life plans changed.

After the operation I just didn’t want to be here. I didn’t want my family to see me not being able.

The 13 August this year will be the two-year anniversary of my operation. But two years later, no doctor really has a hold on my conditions.

I have always had Irritable Bowel Syndrome (IBS), which among other things means an inflamed gut and stomach. And when I had my pancreas removed, I became a diabetic overnight. But now, without daily medication vomiting and diarrhoea are the norm. I have lost at least 30kg since the operation. I can’t eat much, and I watch my diet. I have to: there is no sugar, no processed foods. But I don’t take vitamins or supplements. I don’t want to mask the symptoms. And I tweak my own insulin.

Speaking of her insulin, Barb gets up from the table and opens the insulin kit stationed near the sink. Without fuss, she sticks a needle in her abdomen, right through her shirt. She does not wince, and and she does not appear to particularly care which area she targets. I ask her whether she feels any pain. She admits that her abdomen is numb, and that she has not been able to feel it since the operation.

I feel best between noon and 3pm each day. The nights are especially difficult, due to the pain. Sometimes my eyesight is a problem, as well as the circulation to my feet.

I take at least 13 pills per day – some to settle my digestive system, some to compensate for the lack of a pancreas, but the bulk of the pills for pain and sleep management. Creon, Lantis and Nova Rapid to compensate for my removed pancreas, Rabeprazol for my digestive system, Endep for pain and sleep, and of course Endone and Oxycontin for the pain. These are my daily regime. The side effects are often profound.

I know Barb is in pain as we speak. She shifts uncomfortably in her chair, first on a reclining couch and then at the dining table as we eat. I wonder how much speaking with me is draining her, and how much she will pay for it later.

I need the medications. But month to month it does become expensive, even though I have private health insurance and my medications are covered by the Australian PBS and the National Diabetic Services Scheme.

I have had to adapt. Before we installed railings, I went down the stairs on my butt.

Barb looks sheepish at this admission, but I laugh. I have done the very same thing many a time during a Multiple Sclerosis relapse. This breaks the ice as only sharing the quiet indignities of chronic illness can.

Daily life can be dangerous. I have passed out in the shower. And I once fell on the stairs at night and remained there for two hours until Ken woke and came to find me.

I can no longer travel overseas. Apart from the physical limitations imposed by my medication and my bowels, it would be financial ruin if I were to become sick abroad. The best we can do is to see the rest of Australia that we haven’t seen.

We are going away in October for three weeks. We will drive from home in Kiama to Townsville, Darwin and Katherine, and then back through the centre of Australia. I will have a car fridge for my medications, and we will take it as slow as we need to.

I take each day as it comes. I don’t class myself as disabled. I don’t have a Health Card, although I do have a care plan through the local clinic.

And I have my family. I have a wonderful husband and two beautiful children. My wonderful husband. Before adopting our girls, we went through everything, including IVF and infertility. When you have been through that, it makes or breaks you. Divorce or separation is not an issue. It is enough to be together. Since the operation my libido has gone. But it is enough to hold each other each night, to have that intimacy.

I have good days and bad days, and there are still more good days than not.

I don’t want to be a burden on my husband. Burden is a terrible word. He wouldn’t see it that way, but I would feel like it. I keep telling him ‘I am on my way out, and afterwards I don’t want you to be alone’.

I can hope now. But when it comes to the crunch, I know what I will do. I haven’t spoken about it to my husband, but he knows.

I have my pills. I won’t ask anyone to help me, I just ask that they accept my decision.

I ask Barb about her girls, Jade and Andrea. Many years ago, I coached Andrea’s school netball team, and I wonder how as a young adult she feels about her mother dying.

I have not spoken to my girls, but I have written them a letter. I hope they accept how I feel and what I have said, because no amount of words can change the end result.

But maybe a child out of wedlock would be a good idea given the way I am going.

My mother died of colon cancer in 2006 when she was 78. For her, there was only six weeks between diagnosis and her death. Two years on from my own diagnosis, I see an oncologist every three months. The doctors can find no reason for my cancers. They simply are.

But the last test revealed high calcium levels in my blood. I think the cancer has returned.

At first I assume Barb is in denial. I restrain myself from interrupting, from calling the doctor for emergency appointment. But she is calm, she is matter of fact. This might explain the current pain. It might not. Barb feels no rush to confirm whether the cancer has returned, or whether there is yet another chronic condition that will slowly destroy her body.

I want people to know that they can deal with whatever comes. Even cancer. Just don’t think too far ahead, for it won’t bring you any joy.

The ravages of early onset Alzheimer’s disease

 

Jurg Kunzle

Wollstonecraft, New South Wales

Jurg is 65 years old. Born in Switzerland, he still has a Swiss accent and European mannerisms. He was diagnosed with early onset Alzheimer’s disease in early 2013. I interview him with his wife Marion by his side. Marion is able to fill in the blanks when he is no longer able to. The couple are friends of my extended family and I notice that Jurg – always fluent in English – finds it more difficult to express himself than I remember as a child. Words, especially in English, no longer come easily.

 

Jurg: I was retrenched in 2000 after twelve years with the same company. This was a great disruption to my life, and began a four-year period where I changed jobs twice and was unemployed for two years.

Marion: I saw the signs of Alzheimer’s back then. Jurg was looking for jobs and doing phone interviews, but he started to have trouble answering questions and requests for information on the phone. At the time, I suggested putting a card with the basic details near the phone. My mother had Alzheimer’s disease, and I knew the signs. All I could think was ‘this can’t be happening to me twice’. In late 2012 I spoke to my GP about it, and then booked Jurg in for an appointment with a specialist.

Jurg: It was very difficult for me to admit I needed to go to a doctor. But I knew there was something wrong with my short term memory. I think the stress from unemployment made it worse. And when I did go to the specialist, I couldn’t do the memory test. When the doctor asked me where I was, I couldn’t say, aside from knowing that I was in Sydney.

Marion: It was a difficult time. When the doctor asked whether Jurg had thought about suicide, he said ‘yes’. I was deeply shocked. When asked what had stopped him, he said ‘family’.

I notice that Jurg is agitated, he does not like this topic. It brings up painful emotions, and he does not have the words to express himself as clearly as he would like. As Jurg struggles to explain, his speech reverts to more European speech patterns. Marion suggests words at various intervals.

Jurg: We told the children straight away, Berenice and Danielle. Danielle, the youngest, is more sensitive and took it hardest.

Marion: Jurg could no longer work. But we had debt. For financial reasons, we had to downsize. We have been in this apartment for two years. We were very lucky, as we had a great deal of help from our friends. One couple even temporarily covered our deposit so we could buy this apartment as we were in the process of selling our old home.

Jurg: I worry about Danielle, my biological daughter. I don’t have the inheritance I thought I would have to give her. I am on welfare... I received the Disability Support Pension until I was 65, and now I receive the Age Pension. It is a lot less.

Marion: I have had to take over the household finances – something Jurg always took care of. We had to spend all of our resources before we we became eligible for welfare payments. But I was rejected for the Carer Allowance, I do not understand why. This makes our financial situation more difficult than it would otherwise be. We have gone through the whole process, we have also set up our wills and Power of Attorney.

Jurg: I understand what my path will be. I was thrown from a car accident into a tree when I was 25 and almost died. I still have a scar all the way up my chest. So I have thought about the ‘why’ of life. And now years later I am here, in Australia.

I ask whether Jurg has thought about Danielle inheriting Alzheimer’s disease. Jurg says no, but Marion responds.

Marion: My mother and grandmother both had Alzheimer’s disease. I worry what will happen to me. My mother died from complications from the disease – she stopped communicating with people, and then she fell and broke her hip. With Alzheimer's disease, routine becomes so important.

Jurg nods his head vigorously.

Jurg: At this stage, I only know what is routine. I can walk to my post box, which I have had since 1982. And I can still meet Marion at her work. I know where it is and how to get there, one suburb away.

Marion: He knows to sit in the white chairs near my work and wait for me. But there have been problems. He got lost one day. I was desperate when I couldn’t find him. It turned out that he was in the wrong place in the right building, but he thought he was in a different suburb. I have lost 10kgs due to the stress.

Jurg (directly to Marion): I want to help. I can still do the small tasks. I buy the apples.

Marion (laughing): Yes, and the raspberry jam. You forget, and have now bought us four jars of raspberry jam.

Jurg (addressing me once again): I used to swim. That was my time. But now I can only go if someone drives me there. And I no longer drive... There was an incident.

Marion: One time Jurg caused a car accident and didn’t tell me. Another time he drove past me because he didn’t recognise me. He hasn’t driven for three years, and he officially lost his licence this year.

Jurg is engaged in this topic. He is gesturing wildly with his hands, and sitting up straighter. He wants me to understand what he is losing and has already lost.

Jurg: The world is closing in on me. I don’t even know when I am not here. It is the reason I don’t talk that much. And when I get lost, I don’t ask people for help. What would I ask? At those times, I don’t know what I need to ask.

Marion: Jurg doesn’t remember the most recent episode. When he got lost in Chatswood.

Jurg: I got lost. Why can’t I remember that?

Marion: There is anger and frustration when he can’t remember, when he can’t express himself, when there is no routine. And he has no patience. Our grandchildren are 9 and 6. They are boisterous and exuberant, but Jurg gets frustrated and angry with them. These days, other people mean the chance for misunderstandings and confusion.

Jurg: Sometimes I have to walk away, I have to leave the room. The doctor told me to walk it off when I get angry, and so now that is how I calm down.

Marion: Jurg has trouble with his maintaining his emotions, especially anger. He tripped someone over in a shopping centre because they were in the way. When he was driving, there was road rage.

Jurg: I don’t have any patience. Now I go prefer to go out in the morning, when there is no one in my way.

Jurg laughs at this. Humour is one way to cope. I decide to ask if Jurg takes anti-depressants. He seems uncomfortable, but says yes. Marion tells me she takes the same antidepressant, at half Jurg’s dose. Both look ashamed. I tell them I also take the same antidepressant, and Jurg thinks this is hilarious. We laugh and high-five: antidepressants are a part of chronic disease life.

Jurg: I understand what my path will be. But it has taken me this long to realise what has happened. I hope for a miracle drug, but that is years away. But I would take anything, I don’t have a problem with trial drugs. And if it comes to the end… well, I won’t know, I will have a great time! The important thing is to have a good time getting to the end. I am positive, though. Maybe there will be a new drug. Anyway, my father died at 52 – I can say I beat him!

Marion: This year, and for the first time in 15 years, we are going back to Switzerland. When I took over the finances, I tried to close Jurg’s old credit card. And I found out there were 650,000 frequent flyer points that hadn’t been used. Jurg had forgotten about them! It was a lovely surprise. It means we can take this last holiday. We are going to New York, London, Paris, Barcelona and Zurich.

Jurg: It is the right time for us to go. I want to see my brother, who I haven’t seen in ten years.

I ask Marion how she is planning to look after Jurg. Jurg is silent, and seems resigned to the fact that this is necessary.

Marion (hesitantly): I might need to pin a sign to his shirt with our current hotel and phone number.

Jurg interrupts, suggesting that the problem will be solved if he wears his old dog tag. He seems excited about this. Marion tries to explain this won’t help, as while it has his name it doesn’t identify where he is staying or how to get in touch with her. Jurg protests then falls silent; I am not sure he understands.

Marion: I worry about losing him in the men’s room. What if he leaves by a different exit?

I ask if they have asked for help from Alzheimer’s Australia or another organisation.

Jurg: That is my next step. At the moment I am figuring it out, but I probably need more information.

Marion: Anglicare picks Jurg up twice a week, on Wednesdays and Thursdays. Sometimes the group goes on excursions, like to the Modern Art Gallery, but mostly they spend the day in a community centre. They do paper crafts and keep each other company.

Jurg shows me his paper craft displayed nearby. He is proud, but I am saddened. I had assumed it was the work of one of his grandchildren.

Jurg: Ten years ago I wouldn’t have gone to this type of thing. I am an atheist. But I like to help. I am physically able, unlike the others that go. So I can help, helping is still something that I can do. I help those with physical disabilities, and I help the Reverend. They are good people, we talk about what has happened. Now I even listen to his sermons.

Jurg appears happy, even peaceful, as he talks about the sermons. They are a constant, a routine, and they bring this atheist comfort in a world dissolving around him.

Marion: Friday is Jurg’s day alone. He does the vacuuming, and he still walks to the train station to wait for me.

Jurg: I want to help. I am doing everything the best I can. I am up, I am positive – I don’t want to kill myself. If this is what it has to be, then I am doing this. I am carrying on and I am enjoying life. With Alzheimer’s disease, people think that ‘this is it, I am useless’. But that is negative, and the negative, it kills you. It is what it is. If you lose something, it is gone. Forget about it, move on. Be now, and enjoy. I will do everything I can, as long as I am here. I want to do the right thing. I hope to help others who read this. Anyone can talk to me, and I will tell them that has happened, and that I am still happy. This interview is for the others, the ones who have what I have.

Throughout the interview Jurg has been wearing gloves, even though we are inside. Like many with neurological diseases, he suffers from cold extremities, particularly the hands. He removes the glove to clasp my hand as I leave, and he is shocked (and pleased) to find my hands are as cold as his. We compare our hands to Marion – she is the only one in the room without a neurological disease. Her hands are warm. Jurg hugs me and promises to send me a photo from Zurich.

The point of We Don’t Talk About

This project would not have been possible without the support of The Wheeler Centre, who awarded me a Hot Desk Fellowship in 2015.

For the record, this post contains my original pitch to The Wheeler Centre.

‘The good new is, it won’t kill you. The bad news is, it won’t kill you’. My neurologist told me that at my diagnosis.

We all know someone with chronic disease. And we all know someone who is hiding chronic disease. But most of us chose not to think about it until we have to: when we, or someone we love, is diagnosed.

Because until you are faced with it, the emotional turmoil of living with chronic disease – of not being able to escape a disease – is difficult to understand.

You need help.

The blogosphere boasts a vibrant, helpful community. You name the disease, there is a support network. Blogs abound, including my own www.LadywithMS.com.

But chronic disease is more than the everyday sharing. While this is important (I know from first hand experience) it rarely addresses the dark side. For even in the free-for-all blogosphere, there is a self-regulating tendency to remain positive and to keep up appearances.

But people die or become too disabled to continue, and they fall silent.

Those with chronic disease represent a community within the broader community. And this community – regardless of which disease they have – is forced to contemplate scenarios that the generally healthy do not.

The purpose of this project is to share these contemplations.

I want to talk to people with chronic disease about the grief they face. About the failed relationships. About the choice not to become a parent. About the reality of disability, and the degrees of acceptance it is possible to have. And about the suicide plan many of us have, just in case.

In Strong at the Broken Places, Richard M. Cohen uses his experience with Multiple Sclerosis to chronicle the lives of ten ‘citizens of sickness’. It is an insight into chronic disease in America. But as a book, it is limited to ten stories, and does not represent Australia.

And then there is Race by Studs Terkel, an inspiration far from chronic disease. At a time when Rodney King dominated the news, Terkel interviewed Americans and asked them what they really thought of race in America. He dared to ask the questions no one else would.

I will to tell the stories of Australians whose lives have changed beyond their control. Not the politically correct version, but the real one.

Stories will be published – anonymously or not – on a new blog devoted to this content and added to over time: a living insight into chronic disease. Comment and community by family and friends will be encouraged.

The goal is not to be bleak; it is to be honest. Chronic disease is a personal catastrophe, even after you learn to live with it.

This honesty will help those living with a chronic disease know that they do not have to keep up the happy front. And it will provide a forum to communicate all that is so hard to say out loud.