Fridays with Phil

No man is an island.  In one form or another, we all need help.  Isolation, as tempting as it can be, will not achieve the purpose for which you have been created.

Your life: the good, the bad, the ugly, can help someone else in their journey.

I wonder what your journey could teach me?  I hope I will always stay open to that.

I wanted to write today’s blog to help you.  It’s also written to help me and people like me.

You see, when I was first diagnosed with Motor Neurone Disease (MND) or ALS, I was not familiar with disability.  I knew of it, I had touched it, but I hadn’t been immersed in it.

Four years on, I wouldn’t say I am an expert but I would say there are things I know now, I didn’t know then.

Those in my world would know I have started using a powered wheelchair (PWC) more often than not.

My leg muscles have progressively weakened over the past four years, but at a slow rate for which I am thankful.  My neurologist reminds me rather bluntly, “you should be dead.”   Well, I am not dead and I am very happy about that.

I have maintained by upper body strength, but in this part of my journey, it is difficult to walk, to balance, and there is a high risk of falling.  One friend in Queensland with MND at a similar stage as me, expected to live at least another year and a half, fell, hit his head and tragically passed away.

That I have started using a wheelchair may come as a surprise to many.  Especially those who haven’t seen me for a while and when they do I look physically ok.  I’ve had someone say, “You don’t even look like you need a wheelchair!”

There is no way I would be using one if I didn’t need it.

If for no other reason than I love fast cars and these things don’t fit inside those.  I rely on my family to help load and unload me and my chair.  That aside, it’s the right thing to do.

Using my wheelchair is not giving up.  It is actually the opposite.  I use it to fight on, to stay connected, to have independence and to live life to the full.

Do I wish I could walk like everyone else? Yes.

Do I wish I did not have to use a wheelchair? Absolutely.

Am I giving up? No. I am trying to stay alive!

Can I walk? Yes, for short distances.

Should I walk? No, not often.

I can walk short distances but I am safer in public to use my wheelchair.  Muscle fatigue can cause me to be off-balance and at risk of falling.

My wheelchair has thousands of dollars worth of support and cushioning to support my core and backside so I’m more energy efficient and comfortable in the chair when out and about.  By using the chair, I’m able to conserve energy for the more private necessary walking, personal care and even driving every now and then.

Recently I was travelling by plane with my wife Lenore.  While waiting for the gate to open, a flight attendant came towards us.  She glanced at me in my chair and then proceeded to ask Lenore, “Will he need assistance to get on the plane?”

Their conversation about me went on while I was sitting there.

My wife is now an expert at this situation, and is helping direct the person speaking back to me when I am the topic of conversation.

Just because a person is in a wheelchair doesn’t mean they don’t exist, cannot comprehend, speak for themselves or make wise choices.

On the other hand, I was in a store, Universal Store in Charlestown, and the young shop assistant walked confidently up to me and asked, if she could help move anything around to make it easier for me, to please let her know.  I was so impressed.  She got it.

In brief, some of the things I found helpful in navigating this new part of the journey and hopefully has made me more aware of others in chairs too:

1. Speak directly to the person.
2. If you are in a moving crowd, be aware the person will need to stop the chair before they can shake your hand.
3. Treat the chair as an extension of the person. Touch it as you would someone you were speaking to, but don’t lean on it, hang things on it or take over the controls without checking first.
4. Focus on the person, not the disability.
5. Always ask if the person would like assistance and accept their answer.
6. Express yourself naturally.  It’s ok to say “let’s go for a walk” or “let’s walk to the café” even if the person can’t “walk” – just be yourself!
7. Keep your feet safe and clear.  Chairs are heavy and the tyres are solid. The person driving it can’t see behind them and doesn’t want to hurt you.
8. View the chair as a means of freedom to move independently.
9. It’s ok for children to notice and ask questions. Adults discouraging a child from talking can be more confronting.
10. If talking for an extended time, and the person isn’t able to raise their chair to eye level, find a seat so as to be at eye level with them.
11. I hate the idea of blocking someone else’s view due to the size of the chair.  From my experience, people in chairs are more than ok with being asked to move if they are in the way.
12. If you want a person in a chair to move forwards, backwards, or out of the way, just ask as you would an able-bodied person.
13. Don’t think you can outrun me, I can go 10km/h for 70km 🙂

Thanks so much for reading this. Means a lot.

Love,
Phil

Let’s get one thing straight. I am not thankful for Motor Neurone Disease.

It’s a hideous disease. No, I’m not thankful for it.  In fact, I despise it.

People with Motor Neurone Disease (MND) progressively lose the use of their limbs and ability to speak, swallow and breathe, whilst their mind and senses remain intact (some say it resembles being buried alive). The cause is unknown. There is no cure.*

I meet and watch as strong healthy men, in a matter of months, can no longer move their legs, their arms, their tongue to speak or their jaw to eat. I see as they become prisoners in their body, all the while fully aware of what is happening to them.

I’ve buried too many people to this disease. I’ve sat with too many grieving families losing their loved ones far too young. Just last month, I met a child with MND. It makes me angry.

Personally, there have certainly been moments living with this disease, for four years now, when I grieve what I can no longer do, but I try to keep them to moments and short ones at that, while focusing in on what I do have and can do.

I have become more aware of the small things I can be thankful for.

I’m not thankful for my MND but I try to be thankful in the midst of it. Maybe you have heard me say that before, but you need to understand that it’s not a passive, absent thankfulness.  It’s very active.  It’s very intentional.

I wonder in this fast-paced and full life, if our thankfulness, as good as it is, doesn’t turn into something more?

I wonder if we sat with our thankfulness for just a few more moments, if it would cause us to become not only thankful, but also thoughtful, and not just thoughtful, but active?

I have noticed that each time I am thankful for being able to walk, I am drawn to pray for those, who for the first time will be placed in a wheelchair and never be able to walk unassisted again. But what if there was more I could do?

Each time I am thankful that I still get to taste my food, it triggers thoughts of those who will be getting a feeding tube and therefore never taste food again. But what if there was more that could be done?

MND is no respecter of persons; it can strike anyone; and each day in Australia two people die from MND. Average life expectancy is 2.5 years. For every person diagnosed with MND, it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever.*

I, by no means, wish to diminish the power of thankfulness in our lives.

Research shows that daily discussion of gratitude results in higher reported levels of alertness, enthusiasm, determination, attentiveness, energy, and sleep duration and quality.

Grateful people also report lower levels of depression and stress, and although I do not think we should deny or ignore the negative aspects of life, there is a significant importance of gratitude.

When we are unaware of what we have, we are also unaware of what others don’t have. It is the breeding ground for self-focus. Thankfulness and gratitude develop thoughtfulness and compassion for others as we realise what we have.

We may live in a thankless world, but it is important that we increase our compassion for the less fortunate.

I do wish to encourage us all today, that there is more we can do!

You see, I want to use every breath I have, by every means I can to deal a fatal blow to this disease. I want to be an ambassador that there is always hope. Always.

To the disease I despise, your greatest days are behind you and an army of us are coming at you with all we can muster.

Why?

So that, one day, whether in our lifetime or not, a doctor, can sit across from a patient, like I did that fateful day, and hear the horrible news that they have Motor Neurone Disease but then be told, “THERE IS SOMETHING WE CAN DO!”

In hope for that day, and in action towards it, I have partnered with Cure for MND and the Big Freeze to help host a huge awareness and fundraising campaign locally in Newcastle. If you are keen to join me, you can follow the links below.

Appreciate your continued support as you help us fight the beast,

Phil

For tickets to the Big Freeze Ball (selling fast) visit: https://www.stickytickets.com.au/50467/big_freeze_newcastle_ball_2017.aspx

Join me for a night filled with music, laughter, and community spirit as we raise awareness for Motor Neurone Disease and vital funds for Research into a cure. Saturday June 17, will be a great evening in the Starlight Ball Room, at Wests New Lambton.  All Proceeds from the night go directly into funding vital research into a cure through the Cure for MND Foundation.

For more information visit www.newcastlefreeze.com

*Source: Deloitte Access Economics report Economic Analysis of MND in Australia:  http://m.mndaust.asn.au/Get-informed/What-is-MND/Facts-and-figures