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Fridays with Phil

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motor neurone disease

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

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What I shared at “Belong Women’s Event”. Strength in times of weakness.

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A decision not taken lightly

I have made my decision and it wasn’t one taken lightly.

It is with much thought, prayer, research, investigation and hope that I have decided to take a trip to Europe to have some tests and start a trial treatment that isn’t available here in Australia.

It’s not a cure, but it could slow down the progress of Motor Neurone Disease (MND, also knows as ALS) in my body. While I’m doing reasonably well, and have already outlived my initial prognosis, this is the time to act.  It’s a “sooner rather than later” approach.

With ALS / MND, it’s not like you wake up one morning and suddenly you can’t do something.  Instead, little by little, you lose your strength, some people faster than others.  I’m the only one who really notices that decline day-by-day.

In the past 76 years, since the famous baseball player Lou Gehrig was diagnosed with this disease, there has only been one drug approved for ALS / MND patients: Rilutek.  Rilutek was approved in the 1990s and is said to add 2 – 3 months of life to your prognosis.  In some parts of the world this drug costs up to $4000.00 per month.  In Australia, I pay only $37.50.

While I understand that there is more awareness, finances and scientists than any other time in history dedicated to finding a cure for this disease, I also understand that any new drug could take many more years to be released to the general community.  In that sense, the money we are raising now is for the next generation of sufferers.

Some people have inferred that I should just relax and wait for God to heal me.  My thinking is that when your daughter breaks her leg or your tooth needs filling, do you just pray or do you do what you can and leave the rest to God?

I’ve seen God miraculously heal people of cancer through divine intervention and I’ve seen God heal people through medical intervention.  I’ve also seen people experience their healing through entering into eternity.

I have always seen God move in my life when I do my part and leave what I can’t do to Him. 

Faith, trust, rest and hope are not couch potatoes, they are active and courageous as they approach the battle.

So for those who are praying, thank you, your prayers are effective and mean the world to me.  Be encouraged, I am also doing what I can do to partner with your prayers.

My treatment in Europe will cost in the many thousands of dollars per year, but it has also been known to add 3 – 4 years to a patient’s life.  Next week I go to Europe, hoping for the best, mainly because I want what you would want in my shoes:

I want more time with my wife.
I want to see my grandchildren go to school.
I want to be around long enough so they have some memory of me.
I want to hug my own children for as long as I can.
I want to be around to cheer them on in their lives and adventures.
I love this life.
I want to finish the race at the finish line, not mid-field.

And so, Fridays With Phil will take a short break. If you are interested in updates while I am away and post-treatment, you can follow me on Instagram (@pcamden) or Facebook.

I covet your prayers over this time,
Phil

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Look for the stars while you take out the trash!

I am a Formula One fan.

Not only have I watched it for years but I’ve also been to the Singapore and Monaco Grand Prix.

There have been few rivalries in motor racing like that of Niki Lauda and James Hunt’s. Theirs is a legendary tale, now depicted in the movie “Rush.” It tells the true story of a fierce competition for the title of World Champion in the 70s.

Near the end of the movie, after Lauda’s infamous motor racing accident, which left him severely burned and fighting for his life, these rivals meet again. Lauda recounts his Doctor’s wise words,

“Mr. Lauda, may I offer a piece of advice? Stop thinking of it as a curse to have been given an enemy in life, it can be blessing too. A wise man gets more from his enemies than a fool from his friends.”

Niki Lauda with his wife and son shortly after the near fatal crash in 1976.
Niki Lauda with his wife and son shortly after the near fatal crash in 1976.

I love that line: “A wise man gets more from his enemies than a fool from his friends.”

I put it this way: “Look for the stars while you take out the trash.”

Lauda’s enemies were twofold: Hunt & his injuries.  My enemy is Motor Neurone Disease (MND).

It is a disease with no cure and kills 2 people in Australia each day, while another two are diagnosed. Its sufferers lose all use of their muscles, eventually being unable to walk, move their arms or hands, eat, talk, or breath.

I have this disease (it doesn’t have me) and I have friends who are further down the road than me. When I visit them, I’m looking into the mirror of who I may become, except for a miracle or a cure.

How much do you think that makes me value walking, eating, and breathing now? In this way, my enemy has somehow helped me appreciate what I once took for granted.

Before I was diagnosed with the disease, I hated the interruption of taking the bin out to the end of the driveway for pick-up the next morning. Now I am grateful that I can still do this chore. Not only can I take out the trash, but I can look up and take one more opportunity to see the stars.

I am in awe of the stars, to gaze at God’s handiwork even as I stand amongst the stench of rubbish, this disease, the frustration of my body degenerating: my enemy.

Some have fiercer enemies, deeper valleys, or more rubbish in their life than others, but maybe its also a longer, deeper, and wider opportunity to gaze at the stars and to consider the beauty in the storm.

Our enemy, whatever it looks like, instead of bringing evil, may just with God’s help bring some good.  What I am endeavouring to do in the midst of my challenge of MND is allow it to do what sometimes only an enemy can do: bring to the surface treasure once hidden.

I think if you allow wisdom to have its way you too can gain something from your enemy.

So walk slowly back next time you take the rubbish out and take a look up. And remember, “A wise man gets more from his enemies than a fool from his friends.”

Phil

MND Awareness Week (May 4-10)

Visit http://www.mndaust.asn.au
Awareness is the first step towards a cure. You may want to also sign the “Five Rights Petition” or even give a donation to the MND Research Institute of Australia.

Visit http://www.mndandme.com.au
This week Scott Sullivan, the founder of this organisation sadly passed away. I’m sure the foundation would value any support.

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MND: Pray for a Cure

Walking with great mates to help raise awareness and funds for MND research.
Walking with great mates to help raise awareness and funds for MND research.

Earlier this month, over 700 people walked the outskirts of Lake Macquarie to raise awareness of MND and help raise finances to find a cure.  The cure may be closer than we realise with the below article published Friday in the Proceedings of the National Academy of Sciences USA.

Your continued prayers that a cure be found sooner rather than later for the 1,800 people suffering with this disease in Australia, and many more around the world, would be much appreciated.

We do not give up hope.
Phil

Friday, February 21, 2014

Culprit protein in spread of motor neuron disease discovered

A breakthrough study has revealed how the fatal neurodegenerative disorder motor neurone disease (MND) is transmitted between nerve cells, and suggests the spread of the disease could be halted.

“The agent of spread has been discovered,” says Dr Bradley Turner, of the Florey Institute of Neuroscience and Mental Health.

Motor neurone disease is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die.

Typically, MND starts in a finger or a toe and then spreads. Gradually, it is transmitted throughout the nervous system causing paralysis and death – usually within 27 months. MND affects around 300,000 people worldwide and two Australians die from the disease every day.

“By understanding how the disease spreads in the brain, we can develop new strategies to combat the progressive symptoms seen in MND,” Dr Turner says.

The research shows that a misfolded protein can spread throughout the nervous system. The culprit protein is known as SOD1. The misshapen SOD1 spreads inside a living cell, from one neurone to another, like an infection. Importantly, the study reveals that “wild-type” or normal SOD1 can misfold and transmit between cells, which has implications for the common sporadic form of MND.

Published today in the Proceedings of the National Academy of Sciences USA, the study also shows the spread can be neutralised using antibodies. Antibodies bind to regions of misshapen SOD1, and block its spread. If SOD1 misfolding is the common culprit in MND, as the study suggests, then the antibodies could arrest MND progression, the researchers say.

No human clinical trials have taken place but studies in mice have been successful in blocking the misfolded SOD1 using antibodies and slowing MND symptoms.

The research could also have implications for those studying other neurological disorders  including Alzheimer’s and Parkinson’s diseases where spread of misfolded proteins is implicated. These diseases may resemble the most common human form of prion disease, Creutzfeldt-Jakob disease (CJD).

This discovery is the culmination of several years of work by an international team involving Dr Turner at the Florey, Prof Andrew Hill at the Bio21 Institute, University of Melbourne, Dr Justin Yerbury at the University of Wollongong and Prof. Neil Cashman at the University of British Columbia, Vancouver,

For media enquiries: Amanda Place at the Florey 0411 204 526

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