Search

Fridays with Phil

Life, family and unshakeable faith

Open Search
Tag

#Purpose

Living Intentionally with ALS/MND: My Personal Journey to Slowing Progression.

I have been asked so many times what I’m doing, so this post is a personal breakdown of what I currently do to maintain the best possible quality of life. If you’re living with MND—or love someone who is—I hope this offers a helpful and honest insight into what’s working for me.

This is not a guarantee of any kind that if you do what I do you will get the same results but you may find something helpful and worth trying.

When I was diagnosed with motor neurone disease, I knew I couldn’t control the condition—but I could influence how I lived with it. Like everyone diagnosed with ALS/MND, I was told it is 100% fatal and progresses rapidly, with no known cure.  

Did you know that in Australia, around 1 in 200 people will die from motor neurone disease (MND)? That’s around 3 a day.

It’s often called a rare disease, but that’s misleading. The reason it seems rare is because people with MND die quickly, so the number of people living with it at any one time is low.

For example, the average life expectancy after an MND diagnosis is just 27 months, compared to 20 or more years for someone with multiple sclerosis (MS). Each year similar numbers are diagnosed with MND and MS. However, because MND progresses so rapidly, far fewer people are alive with it at any time—around 2,700 compared to 33,000 living with MS.

So, while MND may look rare based on how many people are currently living with it, the truth is: it’s not rare at all. It’s just fast.

Slowing it down.

Over the years, I’ve committed to slowing its progression in every way I can: medically, nutritionally, physically, emotionally, and spiritually. What I share here isn’t a prescription—it’s my personal rhythm of life, built on professional advice, careful observation of my body, and a fair bit of prayerful discernment.

That doesn’t mean chasing false hope or miracle cures. It means choosing to live with MND in a way that’s purposeful, hopeful, and as proactive as I can manage.

I like to say, “I may have MND but MND doesn’t have me”.

1. Medical and Allied Health Team

I’m fortunate to be supported by a knowledgeable and compassionate medical team. I stay in regular contact with my neurologist, GP, and allied health professionals:

• Physiotherapist (monthly): We focus on maintaining range of motion, balance, and strength. My physio trains my carer, and together we implement a movement routine. 

• Occupational Therapist: Assists with adaptive tools and seating to reduce energy expenditure and prevent injury.

• Speech Therapist (every 6 months): Monitors for slurred or slow speech, changes to the tongue, lips, or jaw, and signs of respiratory involvement.

• Respiratory Therapist: Measures lung function, coughing ability, and oxygen levels.

• Psychologist: Helps navigate the emotional complexities and shifting landscape of living with MND.

2. Supplements and Nutritional Support

For over 10 years, I’ve worked with a naturopath to support my health. We began by testing for heavy metals and toxins. Result was many high levels but mercury in particular was 17x higher then normal. I spent 6 hours in a dentist chair removing my amalgam fillings (which contain mercury, tin, silver, copper, and zinc).

My daily supplement regimen targets muscle maintenance, energy, neuroprotection, gut health, and detoxification.

I have been taking these supplements for the past 10 years or more, mixed in juice as soon as I wake up, about an hour before breakfast.  Interestingly, a paper has just been produced by a known ALS researcher that has endorsed what I’ve been doing all these years.

Amino Acids & Neuroprotective Compounds

• Acetyl-L-Carnitine (1000 mg) – Mitochondrial energy, cognition, nerve protection

• Alpha-Ketoglutaric Acid (600 mg) – Energy metabolism, ammonia clearance

• N-Acetylcysteine (NAC) (500 mg + 800 mg) – Glutathione precursor, antioxidant

• L-Glycine (500 mg) – Neurotransmitter balance, sleep support

• L-Isoleucine (500 mg) – Muscle maintenance

• L-Leucine (1000 mg) – Muscle protein synthesis

• L-Lysine (600 mg) – Tissue repair, immune function

• L-Ornithine (300 mg) – Fatigue and ammonia detox

• L-Serine (500 mg) – Brain cell membrane support

• L-Tyrosine (1500 mg) – Dopamine precursor, cognitive support

• L-Valine (600 mg) – Muscle repair and energy

Mitochondrial & Energy Support (Mito-Charge)

• D-Ribose (4.6 g) – Boosts cellular ATP production

• Nicotinamide Riboside (100 mg) – Raises NAD+ for mitochondrial function

• Calcium Pyruvate (666 mg) – Energy support

• Magnesium Citrate (100 mg elemental) – Nerve and muscle function

• Calcium Pantothenate (60 mg B5) – Adrenal support

• Taurine (50 mg) – Antioxidant and neuroprotective

• Biotin (1 mg) – Nerve health and metabolism

• Acetyl-L-Carnitine – Included again for double mitochondrial support

Liver Support (HepatoClear)

• Silymarin (Milk Thistle) – Liver cell protection

• Schisandra – Adaptogen, hormonal and liver detox support

• Turmeric/Curcumin – Anti-inflammatory and antioxidant

• Artichoke/Dandelion – Bile flow and digestive support

Other Daily Supplements taken morning, midday and afternoon.

• Omega-3 Fish Oil – 2,000 mg (EPA/.  DHA)

• Ox Bile

• L-Methylfolate

• Coconut Oil

• Superoxide Dismutase (SOD)

• Ginkgo Biloba

• Adeno B12

• Methyl-Guard Plus

• BIFIDO Biotic

• UltraBiotic 45

• Vitamin D3 – 1,000 IU

• QH absorb + PQQ 

• Tri-Mag Supreme

• Probiotic (broad-spectrum) – 1 capsule daily

• Curcumin with Bioperine – 1,000 mg

• Methylated B-Complex – 1 capsule daily

• Lypo-Spheric Vitamin C

• Liposomal Glutathione

• Liver Nutrients

• Pro8-50Plus

• SB 250 Spectrum

• Standalone Magnesium – Sleep and muscle relaxation

• Augmented NAC – High-dose antioxidant support.

• Optimal PC, ‘phospholipid complex’. 800mg

• Lithium 1000mcg

• Cal-Mag Plus (Zinc, Vit D&K,Boron.

• Muti Enzyme

• Hydroxide B12 2000mg

• Vitamin E

• Methyl Folate Extra strength 400mcg

• Zinc Picolinate 25mg

• Protein Powder. Whey Healthy Chef.

Yes, MND can be incredibly costly—emotionally, physically, and financially.

Pic of breakfast.

3. Movement and Physical Therapy

Movement is vital—not about pushing through pain, but preserving function.

My Daily Routine:

• Range-of-motion stretches (15 minutes): Neck, shoulders, back, legs

• Targeted stretching (45 minutes)

• Walking short distances with aids or using a powered wheelchair to stay connected with life beyond the home.

• Breathing exercises (3–4 times daily): Deep, slow breath holds to support lung function

• Resistance exercises to maintain—not build—muscle. It’s important to note that I haven’t reversed any effects of MND, but I’ve worked hard to preserve what function I still have.

• MotoMed machine – 2 hours daily. A MotoMed is a motorised exercise machine that helps me move my arms and legs to improve circulation, flexibility, muscle tone and memory.

MotoMed

• Sauna – 30 minutes daily: I complete some exercises during this time

Additionally, I receive soft tissue therapy (3 hours per week) to reduce stiffness and spasticity, and improve circulation.

4. Sleep and Symptom Support

Rest is critical. My structured routine includes:

• Bed by 9:30 pm; up by 6:00 am

• No iPad/iPhone after 5:30 pm, dim lights. 

• when I rest my head I give thanks and gratitude for another day and  usually fall asleep within 10–15 minutes.

• I’ve also found full-leg pressure boots helpful. I wear them for 60 minutes each evening while watching TV. Thanks Gordo (friend with MND), great recommendation.

Recovery Boots

By around 4:30 p.m., I usually finish my day’s work. My muscles have been exerting themselves to the fullest, with some muscles now working overtime to compensate for the loss of muscle elsewhere. My head feels heavy, and my neck muscles are struggling by late afternoon.  

5. Equipment and Tech Support

To conserve energy and maintain independence, I use:

• Powered wheelchair.

• Adjustable bed and seating

• Smart home tools (lights, blinds, communication)

• Respiratory aids on standby.(NIV)

6. Spiritual Life and Inner Strength

MND affects more than the body. I protect my mental and spiritual health by:

• Staying connected to friends, church, and community

• Accepting help—even when it challenges my pride

• Journaling and writing devotionals each morning.

• Seeking counselling, peer support, and honest conversations with others on a similar path.

• FaceBook page: Australian MND Group Connect Share Support.

My relationship in Jesus is my deepest source of strength. I seek His life, light, and love each day.  I draw strength from daily Bible reading, prayer and meditation.

MND hasn’t diminished my faith—it has deepened it. As my body slows my spirit grows.

7. Living with Purpose and Advocacy

I want to live well—not just longer—and help others do the same. When life throws challenges our way, we often ask, “What’s the purpose of this?” Sometimes, there is no purpose—until we choose to bring purpose to it.

Viktor Frankl’s in Man’s Search for Meaning: “we can find or create meaning even in suffering”. That’s why I’ve taken on these advocacy roles:

• Chair, Lived Experience Research Advisory Panel

• Advisor, MND Australia Lived Experience Network

• Board Member, Australian MND Research Collective

• Panel Member, Australian MND Guidelines

• Co-designer, Non-Invasive Ventilation Stakeholder Advisory Group

• Advisor, Community of Practice for MND Care (Calvary Hospital)

• Contributor, FightMND and fundraising events

• Board Member, local church

• Member, FIGHTMND Global Research Roundtable

• Administrator, Facebook support page for people with MND (1,500+ members)

Final Thoughts

I can’t say for certain whether these choices have slowed the progression of my MND, but I can say they’ve helped me live more freely within it. Given how rapidly things progressed in the first year, and how much more slowly since I began my current approach, I can only assume I’m on the right track.

It’s  allowed me to keep showing up—for my family, my friends, my faith, and even strangers who’ve written to say, “Thanks. I needed that.”

If you’re facing MND, or walking with someone who is, my encouragement is this:

Do what you can, let go of what you can’t, and hold onto the hope that—even in this—life is still worth living.

I finish by thanking my wife, Lenore, and my family for their continued love and support. 

5

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

IMG_7874

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.

IMG_7876

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.

img_7849.jpg

img_7824.jpg

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.

 

IMG_7852

img_7840.jpg

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.

IMG_7825

img_78211-e1523531427226.jpg

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.

IMG_7833

IMG_7826

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.

img_7831.jpg

img_7851.jpg

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.)

9

How to find your true self

Thankful for these mates who helped me have an awesome time at the Formula 1 this week.
Thankful for these mates who helped me have an awesome time at the Formula 1 this week.

It’s an age-old game: kids, and even dogs, running after and trying to catch shiny bubbles made from soapy water. And just when they catch one, it disappears.

I wonder if today you feel like someone chasing bubbles, or chasing things that seem like they are uncatchable.

There’s no doubt that one of the things humanity tries hard to catch is meaning. We all find ourselves at one point or another chasing significance, and the more meaningful point to our existence. Often, we find at those times, the more we chase, the more frustrated we become.

I believe we are meant to be people who use life to create meaning, purpose and significance, rather than endlessly search for it.

To use the example above, we are not created to chase bubbles, we are created to blow bubbles, to inject life and meaning into our very existence.

How do we do this? Find a cause to live for.

Your cause in life will give meaning to your life and will determine who you become in life.

As a young man, I was obsessed for many years trying to become the person who I thought I needed to be. This put a lot of my own focus on me: on what I needed, what I wanted, what I thought was of value to my process of “becoming.”

The more egocentric and self-seeking I was, the less I knew about my own purpose and meaning for being. The more self-help books I read, the more introspective I became.  As funny as it sounds, I was my own cause.

However, I’m learning more and more that life is not about me and who I do or don’t become in this world. Life is about finding someone else I can help become all they can be.

In other words, if we can find a cause where the focus is on others and not self, then we, by default, “self-actualise” (that is, we become the person who we are meant to be).

In the search to help others, we discover ourselves.  The cause creates a road to meaning which leads us to becoming who we are.

Find a cause greater than yourself and own it, make it your own.

Focus your attention on meaning and you will become meaningful, or full of meaning.  Fulfilment is found when we find meaning.

When we are busy with a cause, along the way we discover meaning and who we are. Even more than that, it has the power to create a better me and a better you.  You may even find within yourself many attributes that you were unaware you even had.

The more I look at the successful and significant people in my world, I notice that their focus is not in becoming a successful or significant person as much as it is about creating a better world for someone else. Giving meaning to others gives them meaning as well.

The Bible puts it this way (Philippians 2:3-4):

Don’t push your way to the front; don’t sweet-talk your way to the top. Put yourself aside, and help others get ahead.
Don’t be obsessed with getting your own advantage. Forget yourselves long enough to lend a helping hand.

You will find your life when you live a life for others, for a cause that you have made your own.

Phil

10

Blog at WordPress.com.

Up ↑