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Fridays with Phil

Life, family and unshakeable faith

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Cure

Why a property guru climbed Mt Everest and what it can teach us today

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I have had the privilege of becoming friends with Leah Jay in recent years, who is not only a prominent business woman, but who also lost her son Elliot (pictured below) to Motor Neurone Disease / ALS when he was just 19 years old.

Elliot Jay was a talented basketball player and bright University of Newcastle student.

At first, Elliot began to fall over, as his legs would collapse from under him and he struggled to walk up small stairs.  One day when his Dad dropped him off at work, he limped to the stairs, stopped at the base of them for a few moments, then turned, struggled back, eyes filling with tears, removed his tie and said “take me home.”

He was never to return.

In his first semester of university, his friend would joke around with him, because he would take the elevator for only a small flight of stairs.

He was walking with his mate down a popular street lined with cafes when he fell over. Onlookers thought he was drunk.  With the help of his friend and a stranger, he got back up.

Little did they know this weakening of his left calf was the beginning of the Jay family’s tragedy.

Diagnosed in 2007 at just 18 years of age, by January of 2008, Elliot had lost the use of his arms, legs and neck.  He died in April 2008, after a 12 month battle.

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In honour of her son, nine years after her his death, at 4:40am on 22nd May 2017, Leah Jay reached the highest point in the world.

She successfully climbed Mount Everest, becoming one of less than a dozen Australian women to successfully do so.

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Her goal is to climb the seven highest mountains on each of the seven continents in honour of Elliot. This was her sixth and Denali in Alaska will be her last.

 

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There is so much I never knew about the feat that is Everest.

For example, did you know, there is only a window of two weeks per year that you can climb it?

First you have to trek the Himalayas for 10 to 12 days before you even get to base camp, at an altitude of 5, 300m. Yellow tents are home for six (yes, six!) weeks.

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Things I learnt about climbing Everest from Leah’s Pursuit:

  • You climb Everest by completing three multiple rotations going up and down (back and forwards) while your body acclimatises and develops red blood cells.
  • If you could get dropped off on the top of Everest by helicopter, you would die within 10 to 15 minutes. This is why you have to do the rotations.
  • From camp 2 to camp 3 is only 2,000 feet, but it takes 7 hours of treacherous climbing an ice face.
  • Anytime your body is above base camp you can feel it wasting and become weaker.
  • As you climb, you spend about 20,000 -30,000 calories per day.
  • You climb at night, leaving at about 1am.
  • There are 30 ladders, held by ropes, between base camp and camp two.
  • Remember, you do it three times before the summit.
  • It takes six weeks to climb Everest.

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Leah wrote in her journal last year while on Everest, “I’m not super human, I’m just a girl from Newcastle. But I chose to be here.”

She said, you can’t practice the fear you will feel climbing and navigating the ladders.

With so much you can’t control, you just have to keep going and remember the pain is temporary, she said.

She was literally in the death zone.  She slept with two dead bodies outside her tent.  That’s when you start questioning your own ability and reason for being there, Leah said.

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I have learnt so much from Leah’s pursuit.

Leah didn’t just wake up one morning and go and climb the biggest mountain she could find.  She began with high tracks, then small mountains and then Everest.  Once she decided to climb Everest, she lived and breathed it.  Her whole focus was on fitness, diet, sleep, equipment and training.

I believe there is much we can take from Leah when it comes to how we live in the pursuits of our own lives.

Things I learnt about leadership from Leah’s pursuit:

  • There’s no escaping the importance of setting goals.  Those goals need to have incremental victories attached to them.  Leah had a strategic plan in place to conquer Everest.  In fact, she climbed many smaller mountains before Everest, giving her both confidence and credibility.
  • Leah knew she needed a team around her before, during, and after the climb that could make her better than she was on her own.  Her climb was only made possible by the commitment of others in her team.
  • Leah showed commitment and dedication to the team by her personal discipline to her own preparation.  She prepared her mind, body and soul.
  • Leah, to achieve what she needed to achieve, narrowed her focus.  She lived and breathed Everest.  Her eating, sleeping ,and exercise was totally focused towards the climb.  Every activity was attached to the purpose of the climb.
    Activity without a purpose is like a boat with a roaring motor but no rudder for direction. 
    Why not remove the activity in your life that is not producing or moving you towards your purpose and passion?
  • Leah was not just about being prepared, but it became her passion. When Leah shares her passion, her goal and the reason behind why she is doing what she is doing, people rally around that.  People want to attach themselves to things that matter and have meaning.
  • Remember the rotations that Leah did I outlined above?  They involved her climbing for seven hours, returning to base, and climbing another seven hours, then seven more, then again, returning all the way back down to base camp.  This is a test of how your body and mind adjust to the higher levels of altitude.  As her body adjusted, she went a little further.  Leaders note, don’t try too much too early.  Prove yourself in the small things and then you will be ready for the bigger challenges ahead.

Leah will pursue Denali, her final mountain, before returning to Newcastle for the Big Freeze, seeing locals slide into ice water, raising much needed funds for a cure for MND.

For those who want more info on this year’s Big Freeze on June 23rd 2018, you can visit www.newcastlefreeze.com – a worthy cause, I am passionate about and proud to support.

I’ve said it before and I’ll say it again, for all those who are fighting or who have lost anyone to MND, you are not alone.  There is an army of friends, family and a community who are behind you to conquer this beast, this mountain, of a disease.  And like any great endeavour, it will be one step at a time. 

Have a blessed day,
Phil

(And sincere thanks to Leah Jay for allowing us to share her amazing images of Everest and of her beloved son, Elliot.)

Where’s my healing?


Sometimes I sound more together than I really am.  There are days it takes all my grit to keep living with hope and not default to focussing on my own pain, whinging all the while, or trying to escape it even just for a moment.

I don’t want to die and I don’t want to miss out on a thing.

That said, I am well aware that my pain could be another’s gain. I wonder in your life if your pain could become someone else’s gain.

We can choose to try and run from our pain or we can choose to embrace it and take the view that even in our suffering, maybe others can benefit.

This week at the Australian Open tennis, a commercial was aired [via http://www.curemnd.org.au].  It starred tennis players bringing awareness to the MND/ALS disease and the need to find a cure.  I love that!

Some say that MND is incurable but it’s not, we just haven’t found the cure yet.

I know it’s easy to fall into the trap of thinking of ourselves when we go through difficult times, but if we can move beyond that, the potential to help others is enormous. 

For me, that looks like doing whatever I can do to not only seek my own healing, and not only dwell on my prognosis, but also, to wholeheartedly support the quest to find a cure.

It’s not unique but it can be hard.  I see people all over the world deliberately putting the needs and safety of others before themselves even when I’m sure they have their own issues to deal with.

Most people with MND today realise that the cure may not come in their lifetime but what they do today could indeed save the lives of thousands tomorrow.

Like many diseases that were once incurable, a cure starts with awareness, that brings funding, that provides research.  And dare I say it:  our attention depends on the number of people the disease kills and who those people are.

So yes, while there are days I wonder “where is my healing?” I am more likely thinking about how good a cure would be.

I don’t think the discovery of a cure is any less a miracle and gift from God than what can and does take place in an individual’s life.

When I see doctors in third world countries operating on the blind through removing cataracts, it’s a cure but it is also a miracle for the person who can see again.

When I witness children who are infected with H.I.V. surviving through medicine, it is miraculous.

I get excited when through medicine, counselling, surgery, and science, things that were once impossible become possible.  It blesses me to see mankind trusting God to show them His mind on things and where disease once stole life, now millions can experience wholeness.

Just this week I read that according to The Lancet, in Australia 86 per cent of people with breast cancer are still alive five years after diagnosis.  This is thanks to more funding allowing for more research and early detection.

In our waiting and in our suffering, let’s always remember that there is someone else we could help, there is a cause we could further, a hand we could lend.

Waiting with you,
Phil

 

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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