IDIOPATHIC SEGMENTAL DYSTONIA.

Kiaora everyone. My name is Kevin Pepperell – or KP to some. I’m a sixty year old who has endured a lot of pain over the years through worn out hips and an arthritic spine. Often the pain has been unbearable. The hips have been fixed now, but the pain in my back makes me a grumpy old sod that has difficulty moving.

But hey, my life is a doddle compared to some, especially to that of a great mate of mine.

So, this is not about me!!

Let me introduce you all to Matt McLeod – “Wires” to his nearest and dearest. He’s only 48 years old. He’s a husband, a father, a brother, an uncle and respected member of the Tribal Nations Motorcycle Community Inc. He has served his country as a soldier, battling for our freedoms; he has battled for his community as a fire-fighter, and now he is battling for his life.

On an ordinary morning in 2015, Matt awoke without the ability to move unaided, to talk intelligibly and in incredible pain. He thought he was dying. This was the start of a journey that was to take him through endless doctors and hospital visits; being poked a prodded by specialists who had no idea what was afflicting him.

Finally Matt was diagnosed with IDIOPATHIC SEGMENTAL DYSTONIA.

Google it people. Read the write-ups and study the images. At its extreme worst it is a horrible, debilitating and often fatal illness. It is incurable. Matt’s version of this ISD is at its worst.

Only 3000 people world-wide suffer from it and Matt is the only sufferer in Aotearoa/New Zealand

Last year Matt had two overseas specialists come to him on their own ticket to perform a very serious brain procedure which entailed inserting electrodes into his brain which were powered by a power-pack inserted in his chest - hence his nickname “Wires”. Initial results were promising and Matt had some normality returned to him.

Unfortunately, Matt’s symptoms of a distorted neck (causing terrible pain), afflicted speech and movement have returned and worsened. He has had to give up his mechanical business and riding his beloved Triumph. To add salt to his wounds, because this is a medical event and not an accident, ACC will not assist. Furthermore, he has to pay for his own hugely expensive specialist medicines which are not covered as well. Once his personal resources are depleted, he has no access to them. There are also the costs relating to travel and protracted hospital stays far from his home.

This has, understandably, put a huge personal and financial strain on Matt and his beautiful wife Katherine, who is quickly becoming Matt’s only means of maintaining the remnants of his pre-ISD life.

Whilst specialists are doing all they can to find a viable solution to Matt’s illness that allows him to manage his ISD the best he can, options are now running out. If a manageable solution cannot be found for Matt, his ISD will progress to the point where he will become totally reliant on others for all his needs – low end and high end. He will undoubtedly end up immobile and he will eventually undergo a slow and excruciating demise.

I want you to join me in not allowing this horrible neurological disease to consume him prematurely.

So, this is a shout-out to all who may feel inclined to help Matt financially to ease the burden that ISD has foisted on his family. I do not want to embarrass my Brother by undertaking this plea, but I cannot sit back and watch him and his family go through anymore suffering than they already are.

All donation amounts will be received with humility and love and I thank you all for taking the time to contemplate this page on behalf of one of life’s Good Buggers.

Mauri Ora ki a Tatou Katoa.

KP