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Fridays with Phil

Life, family and unshakeable faith

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motor neurone disease

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

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

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.

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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