Monday, 20 August 2012

Tony Nicklinson

Most of you will have seen the recent story about Tony Nicklinson and his campaign for the right to die with medical assistance. Many of you will also have noticed the stark similarites of our existences! I support this campaign 100% and if you want to help Tony and his family please sign the petition at

I don't know if I would be brave enough to voluntarily end my life but knowing this option, with assistance, is available would be of immense comfort. I understand the magnitude of the implications of changing the law but don't accept that it's not possible without exposing vulnerable people to risk. The people to who this situation applies is tiny and could be dealt with compasionately on a case by case basis. But revised laws with stringent guidelines would prevent families like Tony's going through the trauma of the legal system. Changing the law isn't going to result in piles of bumped off disabled people's bodies outside doctors' surgeries across the land. Any legislation would be based on the patient being of sound mind and taking the decision independently. Multiple medical practitioners would need to be convinced this was the case. Politicians and the medical profession claim this is too difficult; they should try living like Tony or me for a week to understand the concept of 'difficult'. And here lies the issue. Nobody who is in a position to change the law has any idea what being "locked in" is like.

This is what difficult looks like

Some of the comments surrounding this case are unbelievable;

The rulings were welcomed by the group SPUC Pro-Life. Paul Tully from the organisation said: "Compassion and solidarity are the humane and caring responses to locked-in syndrome.

can anyone explain what this patronising, self righteous man is saying

other comments basically implied that Tony's suffering was the price that has to be paid for the greater good.

Well that's not acceptable and I intend to do anything I can to help get the outcome we deserve.

Wednesday, 15 August 2012

Back to reality

Readers of my blog will know my mixed opinions on Stephen Hawking but I have to give him credit for coping with living like this for 40 years. I reckon me and him are at comparable states of disability and have to endure the same day to day challenges but whereas he has spent 40 years becoming one of the world's leading scientists, I am struggling to maintain an appetite for life after 5 years. I don't mind that his intellect dwarves mine but I feel inadequate that increasingly frequently I consider throwing in the towel. Life isn't much more difficult than a year ago but it's just slowly wearing me down. The hours and hours of sitting alone in one place, the entrapment of being paralysed from the neck down, the immense frustration of not being able to talk, the boredom of not being able to eat or drink anything, the indignity of carers doing my personal care, the monotony of the identical daily routine confined by the carers hours, the stress of frequently changing carers, being excluded from 95% of family activities, I could list so many more. Regarding the first item, I am not having a dig at anyone because I don't expect people to sit with me. I would feel awkward, especially because I often don't have the energy to maintain a conversation. I guess I sometimes just want people around me, even if they were complete strangers I could at least watch life go by. Maybe strangers are preferable as I wouldn't feel any guilt that I have insufficient energy to interact with them.

I know that I should get sufficient enjoyment and satisfaction from seeing the boys grow up, but it isn't enough sometimes. And those sometimes are getting more commonplace. I feel awful admitting this but it's more of a reflection of the depths that this existence takes me rather than the boys.

I think that things have worsened in the last 3 months or so, because I don't have the energy to use the computer during the day (evenings seem better), but without the computer, life is just a continuous cycle of trying to swallow without choking and struggling to lift my head off my chest. The fact that the MND progression has almost plateaued for nearly two years is of little consolation and there are days when I wish it would just get on with it. The last few months have certainly got me thinking about the merits or otherwise of ventilation.

Strangely, I can remember when I was in my late teens, learning of Stephen Hawking and thinking "how the hell can anyone cope with living like that? ", blissfully unaware that 20 years later I would find out. But actually I still don't know the answer.


Wednesday, 8 August 2012

Visit to Lotus F1 Team

Yesterday we went to Oxford to visit the Lotus F1 Team factory. It was organised by the chap we met at the Supercar day. He has kept in touch and pulled a few strings with some of his contacts. The 90 minute journey wasn't too bad being mainly motorway but oxfordshire's rural roads aren't great. We arrived at 1pm and met up with Adam and a chap from Lotus called Luca who had kindly agreed to show us around.

Lotus, like every F1 team is currently in a compulsory summer shutdown, a measure introduced by the FIA to stop the bigger teams with unlimited budgets dominating. So we were unlikely to bump into Kimi or Romain and much of the place was being pulled apart for maintenance. We started by visiting the underground aerodynamic modeling centre which comprises an office with relatively ordinary looking computer workstations, however.....

.... next door was a room full of rows of servers stacked floor to ceiling worth an extra-ordinary £15m. Not deterred by this, Luke had no quarms arguing with Luca that the 15mm high windscreen was entirely unnecessary. If only we had visited 4 years ago, they could have saved themselves the fifteen million!

Luke offers his quality control services

"and move these lights"

We were then shown the suspension test rig. This would normally look fairly dull when it isn't bouncing an F1 car around but because it was being stripped down for maintenance, we got to see the workings underneath including the 250 tonne concrete bed which is suspended on a bed of air. We got to watch a video of the rig in action with the data from Monza recreating every bump and corner. Apparently drivers can tell you the circuit being replayed just by watching the movements.

After being shown the collection of past F1 cars including those driven by Alonso and Schumacher when they won world championships, we were shown some of the manufacturing processes including carbon fibre and titanium components. I got to hold Kimi Raikkonen's steering wheel and before we left, got see the current cars partly stripped down ready to be worked on again in a few weeks time in preparation for Spa.

PLEASE don't drop it
On the way out we had a second look at the trophy cabinets. The fact that even a third place race trophy looks like any other sports' world championship trophy, confirms the fact that Formula 1 is the world's most prestigious sport.

Thanks to the guys at Lotus for this rare opportunity, particularly Luca who spent 3 hours giving the tour and talking to me normally without patronising me, and to Adam for arranging it.