The son of Gary Parkinson comments on Dad's condition

16th August 2012
Reproduced with Permission

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.

Locked-in syndrome is best described as a condition of almost total paralysis apart from eye movements.

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.

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 the future. My dad was a fit, healthy sportsman with a football career spanning more than two decades.

The stroke struck early one morning. The night before he had been fine.

The next time I saw my dad was at Salford Royal Hospital.

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?

Many questions sprang to mind on my first visit and many went unanswered by medics. 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.

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 question "is life worth living?" has come from him before.

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

H/T Bolton News

Comment by A.D.

I'm severely disabled myself, and I want to thank Mr Parkinson for his wonderfully positive approach to his father's disability. Having wanted to die for over 10 years, and been lovingly cared for throughout, I have come to realise that it is completely unfair that there are "suicide prevention programmes" for non-disabled people, but when it comes to those with severe disability, we seem to be automatically assumed to be "better off dead." I was lucky to be helped by people who acknowledged my equal humanity, and eventually they helped me see that what was needed was not "the right to die" but the right to live with dignity until natural death happens. Until then I have lots to do!

Comment by D.S.

My thanks to Gary Parkinson's son for a positive article about his father's life. Why are the public not given the opportunity to read this or hear it on the media??? As a retired nurse , with a son ,daughter in law, two cousins who are doctors and two daughters and a daughter in law, nurses., all against euthanasia, I remind the public that we all promise 'to do no harm to our patients' Of course we wish to have better' real hospice care' or good home care for a comfortable' end of life' when it comes for each person. This is possible and our society can pay for it if this is we really want. Please don't expect the medical and nursing staff to kill their patients or to withdraw fluids. Don't ask them to do what you the public would not do yourself. If you change the law you will open Pandora's box as happened with 'abortion for special cases', resulting now in ABORTION on demand. The elderly, disabled, vulnerable and terminally ill patients will be terrified to trust those 'caring' for them, if the law changes. We must improve our care of those dependant on us, not force doctors and nurses to kill them and ' get rid of the problem' Are we a civilised society or Not??? Thank God for all who do their best for their loved ones and patients let us support them in a practical way, giving help or accepting better use of our taxes for the health service.