Luke Parkinson: Dad’s life IS worth living

Luke Parkinson, 19, son of locked-in sydrome sufferer Gary (below).
Luke Parkinson, 19, son of locked-in sydrome sufferer Gary (below).
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As one locked-in sydrome sufferer calls for doctors to end his life legally Luke Parkinson, 19, son of fellow sufferer Gary, offers a personal and poignant view.

Media coverage of locked-in syndrome has left a very sour taste in my mouth.

Gary Parkinson

Gary Parkinson

Tony Nicklinson, a locked-in sufferer has requested to be able to take his own life, but is unable to do so under current laws.

However, Tony has won the right to have his case heard and decided by the High Court.

Tony believes his life isn’t worth living. I am sure you have all heard his very understandable reasons for thinking as he does.

Whether you agree with euthanasia and assisted suicide is very much a personal choice and there are valid arguments on both sides.

But I believe a life is a life, no matter what state or condition a person is in, the people around them whether that be family, friends, carers or medical staff should remain positive and always remind the ill person that no matter what they may think, there is always something to live for.

I agree with that 100 per cent.

I find the news coverage disappointing as it shows a bad example to the world of locked-in syndrome and its sufferers.

The possibility of sufferers being able to end their lives sickens me. I can see this becoming an option for doctors with no knowledge of locked-in syndrome, apart from Tony Nicklinson’s case, advising families this may be the best option for the ill patient.

Locked-in syndrome is best described as a condition of almost total paralysis apart from eye movements. Although the patient is awake and their brain actively understands what is going on around them they are unable to speak or move by themselves.

My dad, Gary Parkinson, has locked-in syndrome due to a stroke in September 2010.

I can’t talk on behalf of him or any other sufferer. I can talk as a family member directly affected by the illness and give you an insight into what happened and how things need to change worldwide to create more awareness of this very cruel syndrome.

My dad has made remarkable improvements but is a long way from a full recovery and regaining the quality of life he once had. That is not to say he can’t have an equally good one in future. I am sure he can.

My dad was a fit, healthy sportsman with a football career spanning over two decades and beginning a new chapter as head of youth at Blackpool FC where he was starting to enjoy his time.

The stroke struck early one Tuesday morning in September. The night before had been fine. We had been filling out our football coupons for international fixtures.

The next time I saw my dad was at Hope Hospital, Salford, a moment that makes me emotional now. He was attached to machine after machine. This fit, healthy, lively man had been cruelly silenced by what doctors described as locked-in syndrome. What is this? What are the effects? Many questions sprang to mind on my first visit and many went unanswered by medics who didn’t have a clue. Many carers at my dad’s rehabilitation unit still don’t quite understand the full details. Much research needs to be done so doctors detect signs quicker and the whole health service becomes more effective in helping locked-in sufferers.

My dad has improved a lot since the early days. The machines have gone. He is able to receive physical and mental rehabilitation. Communication is through the use of an alphabet system, dad looking up at the letter he wants to create words and sentences. He also uses a machine which can talk for him depending on where he looks but it can play up and really frustrate dad, another reason why research must find how to best help sufferers.

My dad still has his bad days and, yes, the questions of “is life worth living?” have come from him before, and you can understand why when in such a state. But this is when we need to be even more positive and keep my dad’s mind occupied. The fact Middlesbrough FC and Tony Mowbray have allowed him to take up a scouting role keeps him positive and shows him there is a life even with a disability, something he has found hard to accept.

Opportunities should be made available to all sufferers. One has set up an online travel agency and books people’s holidays through the use of an eye detection machine, similar to that used by my dad and Tony.

I feel the media should look at inspirational people such as Kate Allatt, who came out of the condition in eight months, and actively raises awareness through the charity she set up, Fighting Strokes, which I urge you all to support.

The condition is becoming more common especially among young people and still very little research is carried out. The media must raise awareness positively so people are more likely to carry out research here in the UK. If we just report on people wanting to die, others won’t want to get involved with research as it seems death is the end result of the condition.

In my opinion that is definitely not the case.

I would like to think that in five or 10 years time we will be better educated on locked-in syndrome and medical staff are able to pass on more detailed knowledge to anybody who suffers this terrible illness.

With no offence intended, I also hope laws stay as they are regarding euthanasia and assisted suicide.

A life is a life. That’s the way it should stay.