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Australian MND Guidelines

It will be my honour to be a member of the Australian MND Guidelines Panel over the next two years.

The University of Adelaide has been given a grant from FightMND to produce this national guidelines for the care of people living with MND.

Here is my speech that i gave at the launch.

Talk Title: “Anchoring Hope: The Power of Guidelines in the Maze of MND”

Good morning everyone,

My name is Phil Camden, and I was diagnosed with MND at the age of 54. Harvard University suggests that this is the optimal age when an individual discovers their sense of belonging in the world.

I’ve been married to Lenore since I was 19 years old. We have two married daughters and four grandchildren.

For someone receiving a diagnosis of MND, life can suddenly feel like you’ve been dropped into the middle of a maze—unfamiliar, overwhelming, and deeply disorient-ing.

The thing is, we are not alone in the maze. We know that.  But the others with us in the maze are equally as lost and confusedd.  We bump into all kinds of people wanting to help .  Some don’t even know the name of the maze until we utter the letters MND.

In the heart of this maze, where every turn leads to deeper confusion and the walls close in, there’s no room for chance or instinct—only the desperate need for direction. And that’s where you come in.

It’s not just the body that changes. Identity, relationships, and meaning are all challenged.

What you are doing in developing these guidelines is not just technical. It’s not just procedural. It is profoundly human.

Because in that maze, you are helping us place something like Waze—

Steve and I used WAZE a GPS to drive to Adelaide from Melbourne. It not only showed us the direction but warned us of potholes ahead, traffic congestion, accidents, and police, etc.

Guidelines provide a kind of WAZE a map that helps patients, families, and clinicians navigate an otherwise unpredictable path with confidence, dignity, direction, reassurance, and shared understanding.

And here’s what I want you to hear today:

We place our hope in your ability to produce this work—not just because of your knowledge, but because of your compassion.

Because guidelines, done well, don’t just coordinate care. They affirm identity. They say:

“You still matter. Your life still has meaning. You will not be forgotten or left to figure this out alone.”

You’re not just writing protocols. You’re anchoring people in a story that says:

“Even in the face of decline, you are still a person of worth, deserving of excellence, kindness, and consistency.”

Now let me take this even further.

When someone is diagnosed with MND, it’s like being a prisoner in the American Civil War shown a “deadline”—a literal line that, if crossed, meant death. For us, that line is often drawn at 27 months—the average life expectancy after diagnosis. It’s stark. It’s sobering. And it can feel like a sentence.

But these guidelines you are creating—they take the place of that “dead line.” They redraw the map. Instead of a line of despair, they offer a path of care.

They carry the potential not only to add days to life—but to add life to days.

Who knows how much longer someone with MND may live beyond that 27-month mark?

Let’s find out!

Because those living with MND don’t just need treatment—they need hope.

That hope is not passive —it’s expectant. It’s not just waiting patiently . It’s a confident, eager longing that says,

“There’s still more ahead. There’s still meaning to be found.”

This is the kind of hope people with MND live with every day—not just a hope for cure, but a hope that their care will be consistent, compassionate, and meaningful.

And we are the ones helping shape that hope into reality.

On Tuesday Steve and I visited a friend who also has MND,  Greg is in palliative care and even now the nurse didn’t know how to use a Button PEG – feeding tube. She tried to pull it out and broke it.

Greg is unable to move his legs, arms and cannot speak he is using eye gaze.

He told us that the nurses gave him a buzzer to ring if he needed them but Greg couldn’t push the button. When he got cold and needed a blanket he had to text his wife at home, hoping she would get the text and ask her to ring the hospital and get the nurse to bring a blanket to his room.

So today, as we contribute to these guidelines, know this:

What we are doing matters. Profoundly matters.

You are helping people find their way—not just through systems, but through suffering.

And for that, we are deeply grateful.

Thank you.

6

Sweet and sour!

Isla James my granddaughter is sweet.

Back in 1973 I was 14 years old living with my mum and sister after mum and dad had separated. To make ends meet financially the three of us would clean the offices of Bruce Lyon Real Estate in Epping NSW.

As a treat every Friday night we would buy sweet and sour chicken and rice from the chinese restaurant. I loved the burst of the sweet pineapple mixed with the vinegar. I have since learned that life is also sweet and sour and we need to learn how to navigate that.

What is the sweet and sour of life. It’s the knowing that we all will live with opportunity, loss, challenges, joys, sadness, triumphs and trials. May I suggest the pineapple was made sweeter in the presence of vinegar.

Thats right every life has its ups and downs, its joys and sadness, its triumphs and sufferings.

I believe we grow more from our moments of pain and suffering experienced in our personal reality than our joys and triumphs.

When you do suffer and experience pain you must discover the path to meaning in the midst of it. Someone once said, “pain redeemed impresses me much more than pain removed”.

I have found that God either removes pain or redeems it (I think He leans more towards redemption). He takes what was meant for temporary evil and turns it around for eternal good.

We can spend a lot of time focused on removing pain when redeeming pain is the way forward and upward.

To find meaning and purpose in pain and suffering is the road to redemption. Meaning gives us the strength to deal with pain and suffering. I would go as far to say, that to have victory in life, meaning is as important as hope.

Hope certainly gives us anticipation for a good tomorrow but meaning and purpose bring joy in the now, in that tomorrow that hope brings us into.

Hope carries us into tomorrows present while meaning and purpose makes sure we find joy in it.

Hope can lift our gaze to a brighter future but meaning focuses our gaze on todays wonder and people.

Hope is a vehicle that carries me into my future while meaning and purpose are the fuel that keeps hope moving forward.

I would go as far to say that happiness is a result of discovering meaning in suffering and pain. Once you allow meaning and hope to pervade every arena of your imperfect existence then happiness and joy will follow. A happiness not dependant on your life being perfect or free from challenge.

For me meaning focuses on three things: pursuing God, personal growth and people ministry. As long as your day has these three focuses then joy can be yours no matter what the challenge. These three mixed with purpose, passion and being present makes for a wonder-filled life.

Pursuing God as a Christian, having a relationship with God through my faith in Jesus means I have a real sense of knowing God and getting to know God as a constant in my life. I am both satisfied and insatiable in my walk with God.

1 John 5:20

And we [have seen and] know [by personal experience] that the Son of God has [actually] come [to this world], and has given us understanding and insight so that we may [progressively and personally] know Him (God the Father) who is true; and we are in Him who is true—in His Son Jesus Christ. This is the true God and eternal life. AMP.

When it comes to personal growth I’m not talking about our physical growth or strength. I have found over the past ten years as my physical body becomes weaker because of the effects of Motor Neurone Disease (ALS) that my spirit man and my soul can grow stronger. This growth in our lives can only come by proper spiritual food, exercise and rest. For me that means feeding on the words of Jesus, meditating on His love, life and light and resting in the peace that comes despite the waves that would crash against our world.

Pursuing God and personal growth has to have an external outflow. What we receive, we must give. We have been blessed to be a blessing. If we have been comforted by God it is for the purpose of comforting others.

People ministry is however not just about spiritual and heavenly endeavours, it also includes practical and earthly pursuits.

I suggest all of our lives, whatever our trade or daily responsibilities, can have a personal meaning and purpose attached to them which will foster significance, self worth, and joy.

As a society we tend to think that people ministry is exclusive to doctors, nurses, fire fighters, police, pastors and the like. It’s true these are significant people ministry jobs.

However, can I suggest that your job is also as significant and an opportunity for people ministry.

Imagine our lives without those who removed our rubbish weekly from our homes.

If your one of those drivers, that early in the morning remove the rubbish from my home, thank you. Your work means so much to me and my family. You help to create a home that is welcoming, fresh and pleasant to live in.

Imagine life without builders who build those homes for us to enjoy family and friends.

Imagine life without a hairdresser, electrician, plumber, motor mechanic, accountant, dentist, retail workers, truck drivers, miners, estate agents, physiotherapist.

Imagine our lives without people who mow our lawns, build our places of recreation, hotel cleaners and public transport workers.

Without a barrister and barista. Without being able to legally drink a coffee.

Without parents who are at home raising children and turning houses into safe and loving homes.

Having made the move from city to country I have come to appreciate the many people who make a steak on your plate possible.

None of us would be able to live the life we live without these and many other people ministering to us in their day to day jobs. Thank God for everyone of you!

Now go out and see that you are not just working for a dollar but you are ministering to a community that is grateful.

What about those of us that have become differently able? Those of us that can no longer do what we used to be able to do.

I believe the key is not wishing that you could still do what you used to do, but look for other ways to express your life values.

For me, with the weakness of my body I need to look for opportunities to share my life lessons with those in my circle of influence.

To be available to those who suffer the pain of been given a terminal illness diagnosis. To be a messenger of hope, faith and love.

As a father and grandfather to cheer on and champion my family who are and will be my greatest legacy and the ones who will have me in their hearts more then any other. To being present for as long as possible to love on my clan.

We all need to look at what we do during the day and attach a greater meaning and purpose to it if we are to find real joy, significance and self worth in our life. If we are to get out of bed with purpose.

May I conclude however in saying that the greatest of joys, the overwhelming sense of being significant and having worth is not in what we can do or who we are, but in the wonder and reality that God loves us and His love is completely unconditional.

Love and peace.

Phil

7

It’s never too late

This week my Mum was promoted to heaven.

She was 95 years old and until her final days was active and healthy.  In fact, her last week saw her attend the Lifeline Brass Blokes Awards night (pictured above) as well as her great grandson being dedicated at Church.

If I had to narrow it down to what I am most thankful to my Mum for, it would be her lasting eternal legacy.  Let me explain.

She made some brave decisions at age 54.  After separating from my Dad, I remember how hard Mum would work to find cleaning jobs at night while offices were closed and even got her driver’s license, something she was proud of her entire life.

Not only that, but that was when she started a relationship with Jesus and became a Christian. This new life gave her hope, strength and joy.

I can remember Mum sitting for hours with her Bible, a notebook and studying with the help of audio teaching tapes and various resources.

Raising a teenage boy without his Dad in the picture, Mum knew I needed to have healthy male role models and she started taking me to Full Gospel Business Men’s breakfasts, prayer meetings and Church services.

It was at those meetings Mum introduced me to Christian men who were successful in their careers, had healthy relationships with their family and were not addicted to life controlling habits.

As a single Mum, she was laying the foundation for my future and it is because of her selflessness and courage, her commitment to Jesus, and even her ability to reach out and find help in her time of need, that I am who I am today.

If Mum had not been the brave person she was, I would not have met my wife Lenore at Church or raised my two beautiful girls in a healthy family environment.

Yes, my Mums’ legacy is having generational impact.

When I look back and realise that my Mum was my age and older when I was in my teenage years, I’m amazed at her energy, stamina and zest for life.  Right up until her last week, her life was full of blessing.

Mum made me who I am today because of the choices she made to raise me in the right environment.  She courageously turned my life around for the better.

What we can all learn from my Mum’s life:

It’s never too late to make a change for the better;
We need to do what we can and leave what we can’t to God;
Jesus never leaves us;
We need the help of others and we need to be a help to others;
God’s Word is life changing;
To live today with as much enthusiasm and energy as we have and get up tomorrow and do it all again; and
The last half can be the best half.

Thank you Mum, until we meet again.

Phil

13

I need help

When I was 13 years old my mum and dad separated, leaving my sister and I living with my mum in a tiny apartment. Each Friday I negotiated between mum and dad a weekly support sum given by dad to mum to help raise us. I hated it.

I clearly remember sitting with mum on one side of Epping train station in Sydney while dad sat on the other.  I would walk across the footbridge between them, back and forwards, communicating the terms of how much money mum would get for the week ahead.

At the age of 13, it seemed like dad was only providing for us, not out of love, but because of an unwilling obligation forced on him by mum. And I was mad at my mum that she couldn’t speak for herself and put me in the middle of them.

It’s only after decades have passed that I can see that I had drawn childish conclusions about both my mum and dad at that time. Those conclusions influenced reactions in my life, not only a fear during the early years of my marriage that Lenore would leave me suddenly, but also a difficulty in accepting help from others.

I grew up struggling to believe that when people did help it was out of love, not obligation.

I wonder what childish conclusions you may be living with to this day?

Today as a 55 year old who needs to rely more and more on the help of others, I now realise it was unfair of me to assume ill motives on others. There are people who are neither unwilling or under obligation that want to help and do help. I was the one with the issue.

Maybe like me, you need to acknowledge your own false conclusions.

What I now know is that my dad did love me and my mum was not using me. They had stuff going on in their lives that had nothing to do with me. My dad’s tough negotiating, for example, had more to do with his need for money to feed his addictions and pay his bills, not to mention his anger over mum leaving.

What about you? What childish conclusions about life and relationships are you living with?

Have false conclusions in your life stemmed from disappointments, from past experiences, or just incorrectly processing information?

Are you like me, reacting or responding to people and their actions from a dysfunctional mindset built upon false understandings and conclusions that have framed the way you now think?

You see, not only as adults do we need to put aside childish behaviours, but it may also be time to put away seeing life how a child sees life – recognising, there may be more to every story.

There is so much potential for our lives as we mature, not only in age, but in actions, and in how we perceive the world. I leave you with this verse today, 1 Corinthians 13:11:

“When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.”

Phil

P.S. If you want to help me end MND / ALS, visit www.curemnd.org.au

4

Spirituality 101

Have you ever wanted to hear from God?  Is it possible for mere humans to experience God’s voice?

“Speak, We’re Listening.” These are the words framing Hillsong Conference 2015 which will see more than 30,000 people gather in Sydney’s Allphones Arena. I will be one of them.

This phrase, this cry, implies some powerful assumptions, namely:
That God is alive.
That God speaks.
That God wants to say something.
That we can hear God.

I wonder if you really believe that God speaks? And if you do, how much do you want to hear from Him?

It may start with belief in His existence, that He is a living God, but it also involves our understanding that He cares enough to respond to those who want to hear Him.

Personally, not only do I believe He can speak, I need Him to speak to me: His voice is life, it is my rock in a world of uncertainty.

My desire to hear His voice motivates my ears to listen. Without His voice, there is no fullness to our relationship. God-breathed words, His voice, are oxygen to my soul and infuse life into my spirit.

Like sheep are inclined to their shepherd’s voice for safety, I choose to align myself to the Good Shepherd’s voice. I know He cares for me and has my best interests at heart.

I have no doubt that God has good things to tell us.

Romans 10:17 (NKJV) says, “So then faith comes by hearing, and hearing by the word of God.”

You see, hearing God is no futile activity, it is the very means by which we develop faith. And at the same time, we need faith to hear Him. One feeds the other: faith, hearing, and hearing, faith.

So how do we hear His voice?

We listen: listen in prayer, listen in worship, listen to His Spirit, listen to His Word.

I remember staying at a friend’s home. I was having trouble hearing and his wife who was a nurse, washed my ears out by forcing water to push out the blockage. A bit weird, but it worked.

That’s just like God’s Word. It is like living water. It opens our ears to hear. Today, if you are having trouble hearing from God: try washing out your ears with a good dose of the Word of God.

When you read the Bible, the Spirit of God has something to work with. There are many times when in just reading, suddenly a verse jumps out. That’s the Spirit of God taking revelation and illuminating it to our spirit, speaking it into our life and situation.

Trust the presence of His Spirit in you to communicate what God is saying to you, with or without the details.  Be encouraged that His presence in you can speak directly to your spirit as your spirit is tuned to His voice.

What God says may not be all you want to hear, but it will be all you need to know and all you need for now.  It will be enough for you to take the next step of faith and when you do, He will speak again.

Let that same God-breath that inspired the very words on the pages of your Bible, breathe life into you as you read them.

Give it a try, make room for God to speak.

I, for one, am listening.

Phil

Keep an eye out for Fridays with Phil’s next post on Friday 17th July.

2

I believe we can Freeze MND!

With my family, looking forward to the Big Freeze!
With my family, looking forward to the Big Freeze!

Like me, Neale Daniher has Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS).

This weekend, Neale is spearheading a campaign to raise money for a cure.  On Monday June 8th, several well-known footy personalities will be dunked in a giant pool of ice before a blockbuster Collingwood FC vs Melbourne FC game at the Melbourne Cricket Ground.

MND in Australia alone kills 2-3 people each day and they are replaced daily with others being diagnosed.

Neale calls it the BEAST.  My neurologist, Professor Dominic Rowe, a leader in research for a cure at Macquarie University, calls it the BASTARD.  Doctors, in university exit surveys, are known for voting MND the disease they would LEAST like to get.

MND kills most of those with it within 27 months of diagnosis. Death comes by the muscles wasting away until the person can no longer walk, talk, eat, or move any part of their body but the eyes, and then eventually, they can’t breath.

There is a cure, we just haven’t found it yet!

Personally I’m believing a cure will be found in the not-too-distant future.  I think we can turn Motor Neurone Disease around.

Why is a cure so important?

I believe a cure is the best way we can honour those who have died of the disease before us.  They courageously and valiantly faced their death.  All those who have died from MND have somehow contributed to the cure of the future.  Their death has motivated many to desperately and tirelessly work to find a cure today.

I think of those who can now give testimony of having been cured from cancer and at the same time, I think of those who, because of their death, are the reason we can celebrate that cure today.

Another reason I believe a cure is so important is that it aligns itself with the heart of God for humanity, a good God who desires for us to live life abundantly.  Whenever anybody works to protect, provide and promote life, they work in line with the will and purpose of God for humanity.

I am throwing my full support behind Neale and his team to help raise as much awareness and funds as possible.  If you would like to find out more or lend your support, you can visit www.freezemnd.com.

Phil

3

When pain goes unseen

My grandson Lucas is now six months old.  Lucas is one of the happiest little babies I know.  He hardly ever cries and his smile is constant and infectious.  However, lately Lucas has been crying more and his mum tells me it’s from his teeth forming under the gums.  It’s not the pain from the teeth breaking through the skin but an unseen pain under the surface.

It made me think about the people we do life with who have learned not to cry but still carry unseen pain either physically or emotionally. On the surface they look good, they look together, but there is an unravelling on the inside, a deep pain that is real and relentless that others do not see.

Living with Motor Neurone Disease, and having many friends with disease, I have experienced this first hand.   It can be a physical pain but also the pain of experiencing your body shutting down, symptoms either quickly or slowly worsening, and the pain of adjusting to a new version of the future.

Neal and Janine are friends living this journey.  When Neal was diagnosed with MND less than two years ago, he was a strong miner.  However Neal can no longer walk without assistance, eat food or speak with clarity.   Janine, his wife, told me how frustrating it was in the early stages of the disease when even some of the medical profession didn’t take Neal’s disease seriously because of appearance.

I wonder if it’s true and there are people in our world living with unseen pain every single day, do we allow their appearance to distract us from our response?   My personal conviction is that however messy or painful someone’s story may be, I will give them the chance to honestly share it.

I will be ready to listen, understand and offer comfort.

Once I knew Lucas, my grandson, was in pain, it immediately changed my countenance towards him.  I had compassion.   Some people I speak to with MND are physically exhausted before they have finished dressing for the day.  These are courageous men and women who go out and face the day regardless.

The compassionate person acknowledges the courage, strength and energy it takes someone in pain to look somewhat pain-free on the outside.

I consider myself blessed to have some very close friends and family who have looked past my appearance and asked, “How are you going?” They don’t answer before I can finish.  They give me space to be honest, they inspire me with faith, they are fearless and I thank them.

If you know someone who is in a tough situation, a trial of sorts, I encourage us all to have the courage to ask how they are and then take the time to listen to their response. Learn to see with your ears.

Looks may not be the whole story.

Phil

5

Today’s potential

It is true that some get more out of their 60 minutes in the hour than others.

What makes you more likely to reach today’s potential is directly related to how you put your time to use. You see, time is life.  When we let time ‘pass by’, life sails on by with it.  Time is a non-renewable commodity.  It is more important than energy and more valuable than money.

To manage time, I have learnt that sometimes slower is actually faster.

Preparation may seem like a slower process than just getting stuck in and doing it.  However, planning your approach can actually save hours of wasted trial and error.

Whenever I am preparing for a holiday, I spend time planning as much as I can.  I prefer to arrive departure card completed as well as knowing my plan for transit from the airport so I can start enjoying a new city.

Planning isn’t a kill-joy, it actually allows you more time to be spontaneous.

In making the most of time, learn to do the shuffle.   Shuffle things around to best make use of time available.

If you’re a morning person, don’t leave your most draining tasks until late at night.  Use your time to your advantage.

When I was working in Auckland CBD, if I left home half an hour earlier, it saved me almost an hour in peak-hour traffic.  Instead of wasting time in transit, I organised my life to leave earlier and use that time on the other end for meditation before starting my work day.  I could literally save time by planning well.

Psalm 90: 10-12 says, ‘Our days may come to seventy years, or eighty, if our strength endures; yet the best of them are but trouble and sorrow, for they quickly pass, and we fly away… Teach us to number our days, that we may gain a heart of wisdom.“

I hope today that we may make the most of our time, as men and women with hearts of wisdom.

Being efficient is doing things with excellence in the least amount of time.  Being effective is knowing which things to do efficiently.  Doing the wrong things efficiently is not the most effective use of time.

It can be as simple as working out what you value.

When you decide that, it will help you prioritise your time.   Values help you determine what’s important and therefore make the tough calls when they need to be made.  The word “no” is a powerful time management tool.

Using time well is a way of honouring the important in your life, the people around you and the values you live by.

Right use of the right time for the right purpose brings about right outcomes.

Are there phone calls you can make in transit instead of when you are with other people?  Could a phone call save you driving across town for a meeting? Or could you strategically organise your meetings near each other?

I would encourage you to do the mundane, routine tasks which require less energy when your energy is low or you’re tired, not during your most valuable times or when you have the highest energy levels.

When I was coaching a young married couple, they were frustrated that they had no time off to have fun.  What time they did get off, they spent doing chores – washing, cleaning the house etc.

I encouraged them to learn to shuffle based on what they valued (i.e. time together).  They could steal slices of time on weeknights, for example, ironing on Monday, vacuuming on Wednesday, washing on Friday.  You would be amazed at how it freed up the large block of time they wanted for their weekend.

Just a few of my thoughts on harnessing today’s potential.

Phil

8

Hate is not that bad

The opposites of life cause us to feel emotion all the stronger. Take love and hate.  Love for humankind causes us to hate suffering.  Love for life causes us to hate disease.

For me, these last few weeks have been marked by the contrasts of life.

One week I was at a Christian conference with Church leaders from around Australia, surrounded by old friends, it was an environment filled with vision and hope for a better future.

The next week (MND International Awareness Week) I was with new friends courageously battling a disease that can so easily rob people of vision and any expectation for a better future.

It was like I was living a micro experience of our world.  In fact, most of us live life a little like that, in a place of conflict between love and hate, anger and peace, hope and disappointment, satisfaction and frustration, pain and praise.

We attend funerals one day, and visit newborn babies the next.

We rejoice that our home was not destroyed by violent storms while we hear of others who lost everything.

We are broken hearted over the thousands who die in an earthquake whilst we are ecstatic about one baby rescued in the rubble.

How do we navigate this road of so many different realities?

How do I reconcile an environment of faith, and hope, only to walk amongst those whose dreams are shattered by their current circumstances?

Simply put, we must learn to weep with those who weep and rejoice with those who rejoice.

Our world needs people who don’t ignore pain and suffering, but allow it to do its work in raising emotions of right-anger, and even hate for the conditions some people face relentlessly each day.

Unless you and I can touch anger we cannot know true peace.

Unless we can hate suffering, then our love for people will not be deep enough to respond sacrificially.

My hatred for poverty, scarcity and starvation in other people’s lives will have a corresponding response of love if I allow it time to touch my soul.

Let’s not move too quickly from what we call negative emotions to the detriment of a corresponding positive response of compassion, or prayer, or the fight for justice.

Instead, anger for wrongful laws may run deep enough to bring about a corresponding response of reform.  Isn’t that how the movement to abolish slavery began? What about the death penalty?

Imagine if our hatred of disease and love for others prompted the urgency to find cures.  Isn’t that how Malaria is slowly being eradicated?

Only those who look long enough at the tragedy in Nepal will give towards the relief efforts to ensure help is given long after the media have dropped it.   Media may only last for a night, but money works when we sleep.

Today, I challenge you and I challenge me, don’t run from the opportunity to help others.  Let your passion be driven not only by what you love but also by what you hate.

Phil

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