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Fridays with Phil

Life, family and unshakeable faith

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Rilutek

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

Heaven, healing and the in between

My neurologist just put me through my least favourite range of tests since being diagnosed with MND / ALS.

These electromyogram and nerve conduction tests are gruelling and painful.

They involve the signals to and from my muscles and brain being measured by using electric shock.

Other treatments, like the 3 hour immunoglobulin infusions I have once a month, are a breeze in comparison.

Light exercise to boost my happy endorphins, a drug for MND / ALS patients called “rilutek” said to increase life expectancy by 3-6 months, juicing for breakfast, and  a cocktail of about 40 vitamins I have self-prescribed through my own research have all become a regular part of my life.

Taking it deeper, daily I pray and believe for Jesus’ life, light and love to flow through my body, bringing life to my motor neurons.

I read my Bible and meditate on God’s word and His presence in my life, bringing my mind into a place of peace, not worry.

Why do I do all this stuff? 

Why do I fight this disease with medicines and subject my body to research? Why do I hang my hope on the life-giving power of God’s word?

It’s because I believe in the power of prayer and the word of God that brings life and transforms.

I also believe that God has blessed man with wisdom and knowledge to appropriate healing through medicine.

Is there a tension between me doing what I can and believing God for a miracle?

Yes, there is a tension and for the Christian living in a fallen world: there always will be.

I personally walk the line between doing what I can in the natural, and believing God to do what He can in the supernatural.

They are not mutually exclusive.

We don’t disqualify God from intervening in our situation by relying on man’s advancement in medicine.

I believe God is at work in a number of ways in sickness and health through:

  • the supernatural intervention of Gods miraculous power
    (e.g. defying doctor’s predictions and seeing a medical turnaround. like people healed from cancer);
  • the process of regeneration in our body that has been created by God
    (e.g. the body healing itself from scrapes and bruises);
  • medicines and medical advancements of our time, a gift of God’s wisdom and knowledge to man
    (e.g. antibiotics to treat an infection, or radiation to treat cancer); and
  • the comfort and wonder of one day entering heaven and eternity, a place God has prepared with no sickness or sorrow
    (e.g. death of our physical body causing us to pass from this life to the next).

All are expressions of God’s love, care and kindness towards a world that will continue to struggle against sickness and disease.

If you are sick today, I would encourage you to do whatever is available for you to do as provided by God through medical advancement and trust God to do what only He can do.

This will bring you great peace.

Phil

Me and one of the legends from our MND / ALS small group
Me and one of the legends from our MND / ALS small group

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