We Don't Talk About_Sammy Moynihan

Thriving with Primary Progressive MS

Sammy Moynihan, Canberra

Australian Capital Territory

Sammy is 27 years old. He was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) in early 2013, but has felt the effects of MS since his final year of high school in 2007. MS has fundamentally altered the course of his young life.

 

We Don't Talk About_Sammy Moynihan
We Don't Talk About_Sammy Moynihan

Life is full of things we can’t control. You can be as organised and disciplined as you like, but the chaos of the world will always catch up to you. Just when we think life is going zig, it zags… Or goes completely off the rails and lands in a ditch somewhere. One thing we can control, however, is the way we embrace this uncertainty and our attitude towards things that seem to be out of our hands.

I was diagnosed with Primary Progressive Multiple Sclerosis four years ago, but I could feel the symptoms creeping up years before the official diagnosis. At first it was gradual, but they moved faster and faster each until I finally realised ‘something’s not right here’.

Walking became uncomfortable and my legs were always in pain. I was forever exhausted and constantly falling over for no apparent reason. My whole right side became almost non-existent – excessively weak and unable to function ‘normally’. I found it difficult to grip objects, walk up and down stairs and even shower properly (because I couldn’t reach my armpits to apply soap). Every now and again, my brain was overcome with a foggy sensation and I felt like I was always on hard drugs. Remembering simple things became a chore, as did tying my shoelaces. Standing up was something I dreaded, as it meant shaking randomly and longing to sit back down. Other symptoms would come and go as my body played Russian Roulette with itself.

Initially, I thought it was part of growing up – that people are supposed to feel awful all the time and I wasn’t any different to everybody else. After much insistence from my mother, I saw a litany of different doctors before my GP suggested I see a neurologist. He told I could have a brain tumour and ordered an MRI scan. The MRI did not show a tumor, but it did confirm my diagnosis.

The day I was diagnosed with MS is a day that will always stay with me. Primary Progressive Multiple Sclerosis. There is no cure or official treatment, but symptoms can be managed. For some time, I felt very depressed about the whole thing and lost my motivation and drive. I approached life as though each moment happened in a vacuum, merely existing rather than living my life. I dropped out of university in a hurry and stopped doing the things that made me happy.

People think MS is a death sentence but as I came to terms with the illness and learned how to manage it, I realised it was more of a life sentence. MS is a physical reminder of the chaos and changing nature of life. On some days I feel fine but on others, I will be blindsided by a new symptom or overwhelmed by the existing ones. But in managing these symptoms, I’ve become more resilient and less afraid of things I can’t control.

It seems easy to tell sick people to be positive and everything will be fine. In a medical sense, being positive is what got me into this mess in the first place. There are times when smiling or pretending everything is ok doesn’t work. And it is more than reasonable to be upset about having MS. Still, I have found ways to release my anxieties and acknowledge the good things, even when it seems they are few.

I began writing a blog some time ago, Fully Sick with MS. It has been an excellent and therapeutic creative outlet. When things go wrong, I write about it and try to see the funny side. Not only is this cathartic for myself, I’ve found that it has been great for my readers also. The blog has become a great place for people with MS (or any illness including ‘life’) to connect with each other, share stories or even just laugh in the face of adversity.

I was overwhelmed by the amount of attention the blog received so quickly and by how many people appreciated my stories. I overheard people talking about the blog on the bus and kept receiving emails from like-minded fans. I was a little anxious that I was going to turn into ‘that guy with MS’, but I was also mindful to showcase other aspects of who I am. Now I am an MS Ambassador with MS Australia, and I can share these stories in person. I try not to be defined by the illness, but I also don’t want to be scared or ashamed of it either. Differences should be cherished, talked about and never ignored.

My values changed dramatically, and I’ve found myself going in new directions. I returned to university last year. My relationships with friends and family have strengthened, and I am restoring the optimistic attitude I had before the diagnosis.

I realise that by accepting the negative aspects of life, we don’t have to delete the positive ones. We can acknowledge that things might be awful at a given time but we don’t have to let that feeling consume us. Whenever I feel anxious or sad, I embrace it and don’t waste time trying to block emotions. Once I embrace it and accept it’s there, I am able to look beyond it at the things that make me happy. MS can feel like carrying a burden. While I don’t think that burden will ever completely disappear, my back has become stronger (at least in a metaphorical sense).

The chaos and uncertainty I’ve been speaking of can be frightening, but it is also one of the beautiful things about life. Whether you have an illness or not, it’s thrilling to be able to wake up each day with no idea what surprises are in store. New experiences and faces flit in and out of our lives everyday. I have no idea what will happen tomorrow but I sure as hell am excited to find out.

This is what I want you to know (and didn’t say on TV)

This We Don't Talk About story was originally published in shortened form as 'I Feel Sorry For The Person Who Left Me This Note. They Clearly Don't Understand Disability' by The Huffington Post on 2 May 2016. You can read that version here. This is a longer, more complete version of Justine's story.

 

Justine Van Den Borne

Justine Van Den Borne made national news on The Project after her Facebook message to someone who left an abusive note on her windshield went viral. There have been more than 250,000 Facebook likes, 58,000+ shares, and 42,000+ comments so far. She is 41, the mother of Annabelle (19) and James (17), and is living with Secondary-Progressive Multiple Sclerosis.

We Don't Talk About_Justine Van Den Borne
We Don't Talk About_Justine Van Den Borne

Let me tell you what my MS is really like

A few days after I posted the note on Facebook on 10 November 2015, I wet myself in public.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don’t understand. I didn’t understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my MS diagnosis.

Everyone’s disease is different. We all have different stories. But we have many similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

They also don’t know how to react to my increasing disability.

Two months ago – after I was on The Project – I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn’t walk, I couldn’t move. I sat down on the grass and sobbed. I knew the heat was making it worse, and so I dragged myself to the nearest shade. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself. Because losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

But MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can’t feel my feet. That means I can’t wear shoes that don’t tie have a strap, because I don’t grip like a normal person and shoes just fall off. Last year I stepped on a pitchfork in the garden and ended up in hospital… that was the first time I felt anything in my foot for years.

My hands feel like I am wearing gloves. My fine motor skills aren’t what they used to be. I can’t even plait my daughter’s hair.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don’t use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When you saw me on The Project, I was in pain.

 

This is how it impacts my family and my future

My children, Annabelle and James, live at home. They are 19 and 17, and have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

It started with numbness in my hands and feet nine years ago. I ignored it, as you do. But then my neck and face went numb, so I went to my GP. My blood tests came back normal, so I was sent to a neurologist.

They suspected a brain tumour and ordered an MRI. The neurologist found no tumour: my brain and optic nerve were – and still are – fine. But they did find four massive lesions on my spine.

I was diagnosed with Relapsing-Remitting MS (RRMS), but after a while my neurologist changed my diagnosis to Secondary-Progressive MS (SPMS). SPMS does not have the relapses that RRMS. It just progresses over time.

All these years later I still only have those four lesions. But they are changing colour, indicating more white matter. That means more damage has occurred. I have weeks when my body stays the same, but it never lasts. I notice my progression. There is always something little going on.

I notice. It makes me think of my future.

Before my diagnosis, I feared the fate of the guy who played Superman – his brain still worked, but was trapped in his own body. That may be what MS means for me.

I am an only child. My parents worry about me. My mother helps me so much deal, and wonders what would happen to me – and my kids – if she were gone. In the normal scheme of things, I should be the one worrying about them. But they are confronting their daughter’s mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. But then again, I wouldn’t want to know unless we could treat or avoid it.

My son plays his cards close to his chest and I’m not sure what he thinks. He is always around to help me though, picking his sister up and taking her places now he can drive.

My daughter worries for me. She is like my shadow. We are always together.

I want my kids to be kids. But my MS has impacted their childhood. I don’t like to ask for their help, I don’t want to burden them. I want them to experience the freedom I had, growing up with parents who didn’t have MS.

Their father and I split up ten years ago, before I was diagnosed. Daryl is a fantastic dad and ex-husband. It took us a while, but I think we co-parent well.

I have been with Michael for the past nine years. He has been with me every step of the way with MS. But it has been hard for him. He knows what I deal with behind closed doors.

 

What I have lost – and gained – because of MS

I was made redundant at the end of 2012. I experienced a massive progression in my MS that year and some days I couldn’t walk without falling. My neurologist suggested I stop working, as I was only making the MS worse by trying to do more than I could. I now receive the disability pension. I am grateful for that, but it was not a choice I wanted to make. It was depressing; it felt like I was giving in to the disease.

But MS is makes things hard, and some things are no longer possible.

We have gone to Thailand as a family for the last couple of years, but the next trip will be the last time I can go. It is just too risky these days. I fell over last time and dislocated my finger, ending up in Bangkok Hospital. What if I hurt myself more seriously next time?

My MS progresses every year. Sometimes is just a little worse, and sometimes there is a step change.

I will have to learn to self-catheterise soon. The thought frightens me.

We just brought home a puppy, a Labrador called James. He is to be a companion dog for me. There are aid dogs for people with MS and Parkinson’s disease, but there is a long wait list. I am going to see if I can train James to pick up what I drop.

I still feel sorry for the person who wrote the note… They clearly don’t understand disability. But good things have come from it – there is greater awareness.

And I hope people read this. I hope it makes them think.

I think we all have to do our best to stay standing up, and this is my way.

I Feel Sorry For The Person Who Left Me This Note. They Clearly Don’t Understand Disability

This We Don't Talk About story was originally published by The Huffington Post on 2 May 2016. You can read it here. A longer, more complete version of Justine's story is published here.

 

We Don't Talk About_Justine Van Den Borne
We Don't Talk About_Justine Van Den Borne

I wet myself in public a few days after my Facebook message to the person who left a note on my car went viral.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don't understand. I didn't understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my diagnosis of Secondary Progressive Multiple Sclerosis.

Everyone's disease is different. We all have different stories, but we have similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

They also don't know how to react to my increasing disability.

Two months ago, I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn't walk, I couldn't move. I sat on the grass and sobbed. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself -- losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can't feel my feet. That means I can't wear shoes that don't tie or have a strap, because I don't grip like a normal person and shoes just fall off.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don't use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When I appeared on Channel Ten's 'The Project' to talk about the Facebook post, I was in pain.

This is how it impacts my family and my future.

My children, Annabelle and James, live at home. They have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

I have weeks when my body stays the same, but it never lasts. I notice my progression. It makes me think of my future.

I am an only child. My mother helps me a great deal, and worries what would happen to me -- and my kids -- if she were gone. In the normal scheme of things, I should be the one worrying about them, but she is confronting her daughter's mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. Then again, I wouldn't want to know unless we could treat or avoid it.

I want my kids to be kids. I don't like to ask for their help, I don't want to burden them. I want them to experience the freedom I had, growing up with parents who didn't have MS.

MS makes things hard, and some things are no longer possible. Sometimes it is just a little worse, and sometimes there is a steep change.

My bladder is getting worse. I will have to learn to self-catheterise soon. The thought frightens me.

I still feel sorry for the person who wrote the note. They clearly don't understand disability. But good things have come from it -- there is greater awareness.

And I hope people read this. I hope it makes them think.

Bek Paroz for We Don't Talk About

Working through the pain: A life with Rheumatoid arthritis

Becky Paroz

Redland City, Queensland

Becky is 41. She grew up in a dysfunctional family environment, exposed to alcohol-fuelled violence from an early age. At 18, when she was already living away from home, she was diagnosed with rheumatoid arthritis and lupus. She was told she should expect to be in a wheelchair by 24. After flirting with suicide, Becky has defied the diagnosis – although in pain each and every day – and lived another 23 productive years (and counting).

 

Navigating a diagnosis without a support network

The onset of my disease was sudden. I was 18, and I went from walking a few kilometres a day to and from my job and university to being unable to hold a hairbrush or manage my own buttons. I became a wizened old thing with a twisted body overnight.

The doctors didn’t understand what was wrong with me. And so my diagnosis was something of an event, and came after a series of tests that took more than three months. During those months the doctors had all sorts of theories: leukaemia, lupus, a rare form of cancer, and even ‘something in my head’. The finally checked for and confirmed rheumatoid arthritis. They also confirmed I have bouts of lupus (systemic lupus erythematosus) and I am at risk of medically induced lupus (where lupus flares up as a result of medication).

I was told that there was no known cause or cure. Both my specialist and my GP told me to prepare myself for life in a wheelchair by 24. They thought this because I have a particularly aggressive form of the disease, marked by the rapid onset and evidence of bone degeneration within the first few months. They went so far as to tell me I was more likely to die of side effects from the medication I would need than anything else.

Pain was my constant companion. And I felt very alone. It was a hard lesson: how little some people want to know about the problems of others. I realised that if anyone was going to care, it would have to be me.

I was already living away from home and I didn’t know my housemates well – I was just an extra person to help pay the rent. They were not a support system; they were not family. And my family wasn’t supportive in any case. People asked me what was wrong, but I could see their lack of interest as soon I tried to explain. It was subtle, but after a while I just got used to saying that I had ‘overdone it on the dance floor’ or whatever excuse I could think of at the time.

There was no support in terms of the daily management of my arthritis, aside from more medication. The doctors had me taking 12 different tablets per day. There was cortisone, which resulted in weight gain, fluid retention and mood swings; short and long term anti inflammatory drugs (which put me at risk of as stomach ulcers and liver dysfunction); and immune suppressants to slow down my disease progression. The immune suppressants made me incredibly sensitive to sunlight. They also came with a little piece of paper listing death as a possible side effect. They don’t include that paper anymore. It was hard, being alone and reading that.

I was also told by the specialist that if I wanted to have a child, I should consider having one at once. Her reasoning was that the older I got while using the medications, the less likely I was to be able to have children. She also suggested pregnancy might ‘help’ my disease. I was 19 at the time, newly diagnosed with a chronic disease and still finding my own way in the world without a supportive family. Having a child at that point was not an option. And given my own history of family abuse, I already knew I did not want to bring a child into the world.

 

 

Trying to find my way

People had (and still have) no inkling of the emotional and psychological impact of rheumatoid arthritis. I was a young girl who had just escaped an abusive family home and was looking forward to starting life afresh. I was trying to make my own way, but I struggled to understand what it meant for the rest of my life.

Doctors, colleagues, family, and even strangers gave me various gems of advice, including ‘study is a waste of time’ and ‘just give up your career’. To be told that my life was over or not worth living was painful. They didn’t understand why I was angry and had no idea of why I needed answers. They seemed confused at my rage. But my anger was the only way I managed to not give up right then and there.

I was left to my own devices. I sought answers at Arthritis Australia. After I discovered that everyone at the local group was at the end of their careers and life, I started a Junior Arthritis support group. Those who joined expressed similar sentiments: they felt alone, and agreed there was a lack of understanding from peers and only limited support available. The older people had no relevance to us at all, they were not role models whose lives any of us wished to emulate. The group was successful, and Arthritis QLD eventually started a similar program. 

I also decided to do my own research. I studied anything and everything – crystal healing, aromatherapy, life coaching – to see if I could help myself. I found that while rheumatoid arthritis was common among young people, there was limited support catering for youth. Worst of all was the advice that was all too common… Terrible words like ‘just change what you do with your life’. The overwhelming message was: just give up.

I refused to believe that, and over time I have proved them wrong. Not one person early in the diagnosis asked me about me, what I was going through and how I was feeling. I think it is why I am self sufficient. To this day, I do not count on anyone.

 

Thinking of suicide

I was working for a local engineering design company when I was diagnosed. It was only the second job I ever had. My colleagues saw the changes in me – the physical issues, my tiredness. I was honest with them about what I was going through. It didn’t occur to me that my employer wouldn’t be supportive. Without warning, my boss sacked me on Christmas Eve. He told me I should focus on getting better. Three months later the Disability Discrimination Act was legislated in Australia. I was advised not to sue for damages, although I think this was because the local lawyers were all on good terms with my former boss, and they did not want to take my case. This was my first – but unfortunately not my last – experience of discrimination.

Without a job, I had to move back home… the home I had been desperate to leave. My mother had recently been diagnosed with schizophrenia and was in and out of mental health clinics, my father was not coping, and my two younger sisters were trying to finish high school. It was not a healthy environment for me to be in. It took several months, and I moved out as soon as I could.

But the experience sent me into a spiral. It was at this time I first thought of suicide. After everything I had been through in my childhood, it was arthritis that caused me to finally asked the almighty question, ‘why bother at all?’

I was angry because I felt as if my life had been ripped away, and the only advice I received was to just give up.

I was told to see a psychiatrist. I did. He sat there and stared at me for $200 per hour to wait until I would talk. He told me I was depressed, and gave me a script for an anti-depressant – without telling me that it was. He said it would help me sleep. It did. I took one tablet and slept for 26 hours. I found myself in a black hole. Looking back, it may have been a side effect of the drug. I saw black, I breathed black, I was nothing but black. I sat for three days. I didn’t talk, I didn’t eat, I didn’t move. I don’t remember anything but a blindfolded darkness without light or life.

At some point during those three days I made a decision to ignore those around me and make my own life. I was tired the lack of support from my family and the system. I was tired of their negativity. I decided I ‘would bother, but I would do so on my terms’. And so I set out to educate myself about my disease, potential therapies and even my own mind set.

Need less to say, after that experience I didn’t go back to the psychiatrist. But the blackness found me again, on a much greater scale, when I was 30. I was hospitalised for six months, and I believe it was because I gave into depression. I was so ill I had to learn to walk again, and they housed me in a palliative care unit while I did so. Palliative care is for the elderly and the infirm, who are placed there until they pass on. It is no place for young people. It was another life lesson.

I received disability benefits during that period, but I went back to work as soon as I could. Independence is one of my core values and I loathe relying on others.

  

 

Insisting on chemotherapy

In the first few years, I took all the tablets I was told to. I had incredible side effects, and was very unhealthy as I struggled to understand how to live with this disease. I ended up with blood clots in my lungs as a result of my medication. When that happened they just gave me more medication: this time, blood thinners.

One day my GP commented that I may have to stay on cortisone for the rest of my life. Given the side effects, I thought no way. And so I weaned myself off that drug. Once off that medication and after a few months with no further side effects, I started to get rid of the rest. After all, none of medications were reducing my symptoms.

I do not recommend anyone ignore the advice of their doctor, I am simply sharing what I did at a time when I felt I was not being treated in a way that worked for my body and my disease.

Instead, I read everything: scientific journals, medical papers, help guides, support books… you name it, I read it. And the more I read, the more I realised that the most important thing I could to do for my rheumatoid arthritis was to move. No matter the pain level, it was move it or lose it. I started exercising, focusing on tai chi. Over the years, tai chi has helped manage my disease without the side effects that come with the drugs. Moving is my therapy.

Five year ago, I asked my doctors to investigate chemotherapy for me after it started to gain traction in the arthritis community. I was dubious, but after years of pain the risks seemed worth it. This was my choice of treatment – the doctors did not automatically recommend it to me because I am still of child bearing age. In Australia it is an expensive off-the-shelf treatment, but if other medications prove to be ineffective in specific cases it is possible to receive chemotherapy through the PBS. I went through the process of demonstrating other treatments do not work for me, and after a bout of medically induced lupus (as a result of those treatments), I started chemotherapy.

I now receive large doses of Cytotoxin in an oncology ward every six months: each time there are two treatments two weeks apart. Simply put, the treatment turns off my immune system, reducing the progression and symptomology of my rheumatoid arthritis.

I have reservations about the chemotherapy, despite it being the best treatment I have had. There are profound risks: I have to watch my immunity around large crowds; I can’t be around people with contagious or transferable disease; I have nausea, headaches, and itches; and it cannot cure the bone deformities that have already occurred. But my disease progression has slowed.

Most importantly, I don’t have as much pain. Pain can slowly destroy your life, and when the pain is deep in your bones it erodes your will, no matter how strong you are. And there are other upsides: after my first treatment I was asked by a co-worker if I had undertaken a face lift. Chemotherapy has given me a freedom I thought I would not experience again.

I am now in my early 40s and doctors ask me how my joints are still flexible. My blunt answer is twofold: I didn’t listen to their predictions and I insisted on chemotherapy. A social worker once said that I am lucky that I am not in a wheelchair. That statement made me (and still makes me) furious. It is not luck. It is determination to keep moving, even when the pain is indescribable. It is determination to keep stretching, even when my joints are filled with muck and won’t move. And it is the willingness advocate for myself and try chemotherapy. 

 

 

Moving on from my family

These days, I have a wonderful husband, Jimmy. We have now been married for almost five years. Jimmy is an exceptional man. He doesn’t see my disease; he sees my strength. He doesn’t see the bone deformities; he sees my resilience. Few people have offered me the support that he gives naturally. He pulls me out of my difficult moments, when nothing seems worth it, and reminds me who I am. I am amazed every day that I have him.

I also have a few close friends who are a part of what I go through. They show they care. They stay in touch. They let me know they are willing to help. And they are there for laughs at any time. Having never experienced that kind of support before I think they are wonderful and I appreciate having them in my life. But I still hesitate to trust. I have been left alone before; it is a tough journey and one that I do not wish to re-learn. That is not a reflection on them, it is a reflection on my past.

In general, I have found people do not understand. I have been told eating apricot pips in the morning and drinking apple cider vinegar will cure me. I have had everyone – from a random plumber to qualified social workers – offer their ideas on how I should live. Most doctors simply want me to take anti-depressants. Of course I get depressed, I have a disease that is random, uncontrollable, and incurable! But I don’t just want a pill for it, I want answers. And at this point in time, there are none.

I ignore them all and keep doing what I know is best for me. I have chosen to manage my disease through chemotherapy – a controversial choice but one of the best decisions I have made. For me, it is better than the pills they were offering me, which were merely a control measure – they did not cure my disease and they were not as effective at slowing its progression.

I believe that while I experience pain, I do not need to suffer from it. It is a simple statement, but it has had a profound impact on my life.

As for my family… I stopped thinking about support from them a long ago. Your questions in this interview have caught me by surprise. My first response is ‘you mean there are families out there that are supportive?’

I have had no consistent support from my family since my diagnosis. My mother was forced to marry at 17 years old, when she fell pregnant with me. And my father was a selfish man. He passed away four years ago... It was one of the best days of my life when he died. I do not have good relationships with my sisters either. Apart from the obligatory ‘how are you going’ type questions, they have never asked what it is like to have a chronic and incurable disease. My mother now lives with my husband and I. I wish the rest of them the best, but I choose to have no contact with them. I have made a life for myself and will continue to live it to my rules.

As for children… I was brought up in an abusive household, and I was always fairly certain I did not want children. The medication I take means that having a child is not really an option anyway. If I were to take that path, I would need to be off my medication for a year. That may not even be enough, as I likely have systemic damage caused by my medication over the years.

My husband has a daughter from his first marriage, and he has always wanted more than one. We discussed it, but we decided that it was not worth the possible complications. And I am not sure I could live with the guilt if I were to pass on this genetic joker card to a child.

 

The quote Bek Paroz lives by

 

 

Understanding what has changed

The public's understanding of rheumatoid arthritis has barely changed since I was diagnosed. And the education or support I receive from doctors has not improved either.

I recently saw a doctor to treat an ongoing flu and asthma attacks. I asked him to check whether the corticosteroids he prescribed were appropriate to take given the chemotherapy treatment. He was patronising and said ‘I think that’s a little bit of an exaggeration, don’t you?’ He just wrote the script and didn’t check the drug interactions on the MIMS Australia database. I took the script, did my own check, and managed the outcomes myself.

As for the support services on offer… I have found that most on offer are about enabling people to feel sorry for themselves, instead of empowering them to take control of their disease.

A part of me thinks I should step up and be the voice that is missing… but I don’t want to focus my life on the disease. I prefer the mind set I have now, where I focus on living my life.

My advice to others with chronic disease is to educate yourself. Know more than your doctors about what you have – and by that I mean real education, not just the results of a google search. Read medical journals, scientific articles, books written by specialists. The more you know the better position you will be in to engage with, and make better decisions about, your own health.

Explore alternative medicine with a healthy dose of scepticism. Some will alleviate your symptoms, most won’t. Don’t let anyone stop you from trying something, but don’t be disappointed when it doesn’t work.

Get rid of toxins from your life as much as you can. Look after yourself and your environment.

Make your life a flexible as you can, in terms of work, play and people. Make sure those in your life understand why you might be fine one day and not able to walk the next.

Stay away from people who refuse to understand your circumstances. You will save yourself a lot of trouble by keeping them at a distance.

And keep moving, because it will be much harder to start again. Flex those joints whenever you can. I am currently writing a book called Just Keep Swimming! It talks about why it is so important to keep moving… I think the ability to just keep moving is the most important lesson I have learned.

More than two decades after my diagnosis, I am proud of how I have handled myself. I have filled my life with more adventures that most. I have jumped out of planes, flown helicopters, raced cars, studied, had a fulfilling career and travelled around the world. I am not inspiration porn, I am an example of what can be achieved with the right mind set and a healthy dose of determination.

Rheumatoid arthritis will only limit you when you let it. There is pain: accept it will always be there. Stay positive, have goals to live for, and surround yourself with people who care.

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.

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.