Tuesday, 19 November 2013

Glenn Phillips, aged 48 has a long list of all the things he will never be able to do again. Motor Neurone Disease has robbed him not only of his job, independence and mobility, it has also taken away his great passion for watching live football.

Glenn Phillips, aged 48 has a long list of all the things he will never be able to do again. Motor Neurone Disease has robbed him not only of his job, independence and mobility, it has also taken away his great passion for watching live football.


But Glenn is now focusing on what he can do. He shares his story, the support he has received from Peace Hospice Care and his determination to raise awareness.

The roar of the crowd, the creek of the turnstiles and the thrill of watching the ball hit the back of the net has been part of 48 year old Glenn Phillips life since his childhood.

For countless seasons, Glenn, from Bushey, has sat down beside his brother Gary in his season ticket seat at White Hart Lane to watch the match unfold. Keeping an eye on Watford FC – his local team, has also been part of his life.

Goals, great times and the emotional highs and lows of football has run through his Spurs blue veins for years.

But on Sept 1st, 2012, Glenn made his way to his seat at White Hart Lane for one last time.  He knew he would not be fit enough to be part of the glorious game again.

‘I knew it was my last match and I would not be going back  to use my seat. My health was against me,’ states Glenn. ‘It was a hard day for me and my brother. Really hard.’

Glenn was diagnosed with Motor Neurone Disease (MND) at 11am, August 18, 2011 at the National  Hospital for Neurology and Neurosurgery. It is a date etched in his mind.

MND is a progressive debilitating disease that  affects two in every 100,000 people. Around 50% die within 14 months of diagnosis. There is no cure and those with MND experience  the motor nerves of neurones in the brain and spinal cord being affected leading to loss of mobility difficulty with speech, swallowing and breathing.

‘I cannot explain the hell I went through for the first two weeks after my diagnosis,’ said Glenn.  I know there is no way out of Motor Neurone Disease. It will kill me. And I do look at the world so different now. I look at all the simple little things that everyone takes for granted.

‘Soon after my diagnosis I had three holidays to the States with family and friends. We had some great times. But holidays are in the past now.  I have a long list of all the things I can’t do anymore. Going to Spurs is one of them.  Not being able to cook, bath, drive, write, use my computer, wear jeans, or go to the pub are also on my list.  I can’t even do my own jeans up.’

Despite his daily battle and deterioration Glenn, who was formerly Head of Faculty at Oaklands College, remains strong in mind. Motor Neurone Disease has not taken his sharp sense of humour or his determination. He is battling on and has a mission to manage MND with help and support.

One part of Glenn’s life that continues are his visits to the Starlight Centre at Peace Hospice Care.

The Starlight Centre offers support to people across South West Hertfordshire with a life limiting illness. The centre offers a range of medical, nursing, therapy, social and support services for people from the earliest stage of their illness aiming to help patients take control of their illness and plan ahead.

For one hour every fortnight, Glenn benefits from a deep body massage, social interaction and the rapport he has built with his Complementary Therapist.

‘That massage does everything for me,’ said Glenn. ‘I hugely look forward to it. I used to be able to drive myself to the Hospice and saw it as a pleasant part of my week.  Now my carer drives me and the massage has become a necessity.  An absolute necessity.

‘When I first got referred I was not aware that there would be Complementary Therapy available at Peace Hospice Care.  But I found out there is so much available. I was given a chance to try it all and find out what suits me.  The massage is just right for me. After a massage it is the only time I can feel any sensation in my arms.  It reaches the deep tissue and it’s wonderful.  And I get to have a laugh. Socially it is very important.  Of all the things I can’t do anymore, I will continue to go to the Starlight Centre at Peace Hospice Care.’

Glenn will also continue checking the football results, catching up with matches on TV, keeping a close eye on Spurs, and Watford FC.

‘I have always checked out Watford’s results and hoped they do well.  They are my local club after all and it was disappointing they didn’t go up last season.’

In addition to keeping football as part of his life Glenn has another major aim.
He is determined to raise awareness of Motor Neurone Disease and is reaching out to friends, family, football fans and the community to put it on the map locally and nationally.

‘This disease is a living nightmare.  It is too abstract to believe you are going to die with Motor Neurone Disease,’ said Glenn. ‘I won’t be here in a few years time.  But with the time that I have left I want to create awareness. I have been instrumental in launching a local meeting and social group for those with MND.  We have our first meeting in December and it will be an important part of a local branch of MNDA. 

‘People like me with MND will have a chance to come together with their carers or family. It’s important  those with MND  have a chance to meet, and I am driving it forward.’

 Glenn also has inspired his mum to become involved in the Bournemouth group of MNDA.

‘Giving up going to Spurs still hurts and it’s hard for me and my brother. Any football fan would understand that.  But I try on concentrate on what I can do.
‘I can continue to get support from Peace Hospice Care and raise awareness of Motor Neurone Disease. It is my chance to make a difference and reach out to people. My voice is deteriorating. In time there will be more ‘can’t do’s to add to my list.   But I am still determined to communicate and spread awareness. That is my aim. That is what I can do.’


To find out about Complementary Therapy and other services at the Starlight Centre call 01923 330330 or email us

To find out about the local branch of Motor Neurone Disease visit 
www.mndasouthherts.org

Those with MND and their carers are invited to attend the first social meeting group on December 11 at Boxmoor Trust Centre, London Rd, HP1 2RE.