Oceans of Hope Challenge 2018

In November this year I have an amazing opportunity to sail around the Hauraki Gulf with 35 people from around the world with MS. This will be a massive challenge for me as I get dizzy sneezing, so have no idea how I will go with on the Spirit of New Zealand for 5 days.

Oceans of Hope broadens the horizons of people living with MS. The disease can be a real challenge both physically and mentally, and the challenge is designed to inspire people to not just live with MS but LIVE WELL WITH MS.

Over the years I have learnt a lot about my MS and how I can live better and inspire others to do so. I will take what I learn from the Challenge and use it to make sure I do both of us as well as continuing to raise awareness for MS.

If you are interested in helping me to cover the costs of attending then please check out  https://givealittle.co.nz/cause/oceans-of-hope-nz-trip?_ga=2.171927651.2106154874.1535316114-216871442.1534722064#


Happy anniversary

Today is the 8th anniversary of me having MS. In another 8 years my first lesion will be old enough for me to kick it out of home ( if only ).  Mind you it will also be old enough by then to get its drivers license and can drive it self off into the big wide world.

Short of some awesome medical advances in that time it will have to remain where it is continuing to teach me new stuff.

So, in talk show style.  Here is a list of the top 8 things MS has taught me in the last 8 years.

  1. What is MS? –  MS stands for Multiple Sclerosis and it basically means that my immune system is trying to eat bits of my brain and Central nervous system.
  2. You don’t know how strong you aren’t till you need to be – somedays I am in a bit of pain some days a lot.  But I still have to live, love, laugh and learn regardless.
  3. The make the names of the drugs hard to say and even harder to spell  –  A lot of people with MS develop difficulty with their speech so can you imagine trying to say the name of a pill that sounds a  lot like Gonorrhea.  Enough said.
  4. Peoples eyes are the hard to look at–  this might sound like a weird thing to learn but it is true. I’d rather see sympathy in someones eyes than empathy.  I had a conversation at a bbq the other night and was discussing this with someone. “Surely empathy is better to see than sympathy” was the observation.  “No! If they have empathy then they KNOW what I am going through and I wouldn’t wish this one anyone.  Sympathy means they care.”  The look in my wife’s eyes when she checks my face to make sure I haven’t developed a palsy again is something I am always aware of too.
  5. The fatigue is awful –  The best way to describe MS fatigue is “ when you are tired your eyelids want to close,  with MS fatigue your eyebrows want to close”
  6. It is different for everyone.  MS is often referred to as the snowflake disease. While there are some common symptoms it can and will strike everyone differently.  It will wander along at its own pace, in its own little world and do whatever it feels like.  Not unlike a toddler in a supermarket really.
  7. Attitude is everything – I wanted to write something cool and inspirational here to finish with but the reality is it is up to me how I chose to live with MS.  My attitude is something that I can control.

So that is my list of the top 8 things having MS has a taught me in 8 years. But but but there is only 7 I hear the more detail focused people say.  

#8 is by far and away the most important.

  1. People make the difference – If it wasn’t for the love and friendship of those around me I wouldn’t have achieved diddly squat over the last 8 years.  It was the love of those around me that helped me get through the early years when I was really struggling.

Thank you to everyone who supports, inspires and encourages me. You help me to live better with MS.

Dream Big and Live Bigger.  ( I might have to copyright that I think ).

Dream Big – Live Bigger

Three years ago one of the best moments in my life happened – I held the first copy of “Blue Ted’s Day at home”.  For those that don’t know it is a children’s book that I chose to self publish.  The Christmas I gave away the last printed copy I had with “Dream Big – Live Bigger” written in the sleeve.

Things always happen for a reason and over the last few weeks I have been asked quite a few times when is the next Blue Ted story coming out.  Not if – When. Sometimes it is good to clear the mental filters and listen to what the world is really saying.  So #Iamwriting.

Why have I not done it sooner?  Because I have been procrastinating but I came across a wonderful trick to beat procrastination.  Try it for 5 minutes.  Yep that’s it – If you can do it for 5 minutes,  no matter how hard it might be, then you can keep on doing it.

I don’t have a date but I do have a first draft and it involves strawberry ice cream.

Thank you to everyone that has encouraged me over the last three years especially my wonderful wife.

Keep living well.

Warning blatant self promotion to follow.  Blue Ted’s Day at Home is available on Kindle at this link HERE

My Yearly Speech

Every year I give a speech to a Theatre School that I am part of.  I thought I would share it with you.


Do you believe in Magic?  I do.

Why do you think I do?   ( someone yelled from the audience “because you are awesome” )

Because that is what you do everytime you walk out on stage.  You create Magic.  You weave a spell with what you’re learning here and you bring your character to life for your audience sitting there.  

AND I love that magic.  I love seeing Robin Hood standing right in front of me.  I love seeing the Pillow dragon flying across the stage. I love seeing Freddie and the Three Fat Fairies.  I love seeing every single character as you bring them to life.  And I love seeing how our students go on to do awesome things with their lives.  I know students that are now performing all around the world.  I know Lawyers, Teachers and Parents.

This year you made me proud, you made me laugh and some of you made me cry.  YOU should all be very very proud of what you have done.

Original Scripts has been a huge part of my life for nearly 25 years and YES that makes me feel old.

But this year I experienced the Magic of Original Scripts in a way that i never realised existed.

The magic of queuing to see a play.

The magic that is seeing your child on stage.  Experiencing his nerves, my nerves and the nerves of everyone that is queuing to come support someone.

But there is more magic to us than just what happens on stage.  There is the Magic behind the scenes.  

Our annual Kidsfest production wouldn’t happen without the wonderful support of the Rata Foundation and the hard work and dedication of the members of the Trust.

Our productions wouldn’t happen without the fantastic support of all of our volunteers.  I was blown away by the quality of the lighting and sound in the shows this year.

( To the Parents ) The students wouldn’t be here without your love and support.

( To the Students )  And the magic onstage wouldn’t happen without all your hard work.

On behalf of the Trust and my family I would like to thank you for all your hard work this year.  

I want to finish with a text my wife got this week “Last night was totally unbearable but the kids were absolutely amazing.  So proud of the school.  WHO said that kids of today are soft !!!.  They are Champions.”

You are all champions.  

Have an amazing Christmas and holidays and please keep being magical.

Choose to Dance

I admit – I cant dance.  I also admit – I have never been to this.  But what I will admit too is that a new dance program that is being run with the MS & Parkinson’s Society here in Canterbury is making a difference in the lives of those that attend that have MS or Parkinson’s.

Have I chosen to dance in the past.  Certainly.  I chose to dance at my wedding.  Beer helped me chose to dance on a fair few Friday nights and i did once dance on a stage as a Barley sugar.

Everyone has choices to make on how they live their lives. Have a look here to check out an interview with Adriaan.  He is making a choice every-time he runs a class to help people live better with their illness.  And that choice is one to be immensely proud of.

Choosing to make a difference in life is harder that choosing to dance ( especially when you are under the influence ).   I find it really easy to focus just on me and ignore how others are doing.








An unexpected opportunity

Sometimes in life an opportunity presents itself that cant be ignored. This happened to me recently when I was asked about joining the committee that works with the MS and Parkinson’s Society of Canterbury.

I have been working closely with the society over the last 18 months helping to develop and deliver a course for people that are newly diagnosed with MS called “Living Well with MS”  I have learnt so much about myself and my MS in the process.

A myriad of questions wandered around my brain over the days leading up to my decision.  “Will i be able to manage the additional workload above and beyond my job and life?’,  “What do they do?’,  “What do i have to offer?”  and for some reason “Will there by cake?”

Having MS has taught me to make the most of opportunities.  I know I have much to learn and i know I will love making a difference.

The website for the Canterbury society http://www.ms-pd.org.nz/

For the record – there is no cake – YET.

Love is spikes and lumpy bits

My wife was recently given the honour of speaking at a really close friend’s wedding.  One problem – we couldn’t go.  There were tears, negotiations and in the end a brilliant solution.  Let’s put pen to paper and then get someone to read it on our behalf.

After a few more negotiations, and with our sons help, I wrote this for them.

If you Google the word Love you will end up with roughly 7 and a half Billion search results.  Some of the results are deeply inspiring, some are motivating, some involve religion and so on. In fact, it is impossible to put into words what love truly is

What is possible to do is to ask a 7 year old what he thinks love is.

Love is when people join together

Love is having friendship

Love is being kind to people

Love is People respecting each other.

Love is also two spikes with lumps on top.

This is Love in the mind of a 7 year old boy.  Deep, meaningful and all about people being together.

There is a famous quote that goes “People will not remember what you say, People will not remember how you said it.  What people will remember is how you made them feel.”

(We got the speaker to turn to audience) Can you all please hold your hands up in the air and with your thumbs make two spikes and with the rest of our hands make two lumps on Top.

2017-03-23 08.31.08No words can express how much your wedding means to us. So before you is a sea of love.

You both epitimise Love.  You join people together.  You are amazing friends.  You are always Kind and respectful.

Thank you both for your love of each other and of us for now and forever.