Monday, 31 December 2012

Skunk Anansie and American Idiot

With all the stress of the weeks preceding Christmas I didn't mention the 2 other shows we went to. The Friday before the hospice we saw Skunk Anansie at Brixton Academy which was excellent. The singer, Skin, still has one of the best rock voices and remained note perfect even during her various crowd surfing sessions. She sang one song standing on the mixing desk having first walked across the crowd's shoulders to the back of the venue. Another song was sung from the middle of the crowd after getting around a thousand fans to sit on the floor!

We hired a driver again which allowed us to be dropped outside and picked up quickly after. The 45 degree ramp into the venue is always daunting but the staff are brilliant and helped us from the car to our seats and back again afterwards.

Then on the Sunday during my hospice stay, we took the boys and my mum to the musical American Idiot (based on the Green Day album). Although Billie Joe Armstrong wasn't performing in any of the UK shows, it was still excellent and confirms what a good album it is.

Boys' Talent Show Performance

Sunday, 16 December 2012

'One of Them'?

Having read my last blog, the nurses thought I would like to go to the hospice's Christmas party! I didn't have high expectations but thought that at least I should make the effort and they took me upstairs to the afternoon session. Picture the scene; 12 people sitting in a circle, predominantly over the age of 70, some with blankets on laps and all with an instrument to shake or bang. Yes, there was going to be a happy clappy sing along session. And there was me, 30 years younger, wearing my Pink Floyd T shirt, thankful I had a rock solid excuse for not being able to join in!

This is what someone who is serving a prison life sentence, knowing they are innocent, must feel like. I shouldn't be here, I don't belong here, I am not 'one of them'. Call it denial or a survival strategy but I just won't accept it. And it is intollerably and desperately depressing to know that I have to eventually accept that I am wrong.

Thursday, 13 December 2012

What's going on

So, as a result of things reaching a crises point last week, all sorts of wheels were put in motion (some very unwelcome). One of them was reassessing my care package. Between the hospice, care agency and NHS funding department it was decided I should have a live in carer. This on the the face of it sounds good, and from my care point of view it is. But having a carer in the house all the time is understandably intrusive for Tracy who finds their current presence levels stressful. So if the arrangement is to work we need to find an appropriate solution!

Next they decided that all transfers including toilet transfers required a second carer because they wouldn't allow me to use a standing hoist anymore and full hoisting requires two carers! So they wanted double up carers at 4 specific times of the day to cover bed and toilet transfers. This would negate any advantage of the flexibility of the live in as I would need to be at the house at specific times to use the toilet, not to mention the expectation for me to crap on demand!

However I insisted they assessed using standing hoist at the hospice which is better than mine. Thankfully they agreed so I only need two carers for bed transfers although I now have to spend £2500 on the new hoist!

But until it arrives (upto 4 weeks ) I need two carers for all transfers. And there lies the reason why I am stuck at hospice until Monday; having insisted on these new conditions, the care agency don't have sufficient carers to delivery it until next week. So they basically said either stay in the hospice or be cared for at home but in the bed! Needless to say, being told this an hour before being due to go home pissed me off no end.

You might be thinking, what's the big deal? Well it's soul destroyingly boring here even by my tedious existence standards. There is absolutely nothing to do for the 7 hours between carer visits. I can either stay in my room and watch tv without being able to change channel or sit in the coffee shop and listen to people discuss their relatives funerals. I opt for half and half. It's tolerable for a few days but not for nearly a fortnight

The hospice staff have all been lovely and have tried their very best to sort out everything



Wednesday, 12 December 2012

The latest...

I am stuck at hospice until Monday now, almost 2 weeks, not happy. I will explain tomorrow but almost 2 weeks here is mind numbingly boring, even by my tedious existence standards.


Monday, 10 December 2012

The Current Situation...

Last Wednesday I came into Princess Alice hospice for a week's stay. It was the culmination of me feeling very unwell for several days and Tracy reaching a point where she was struggling to cope with everything. We had recently discussed respite options and although I wasn't keen I had agreed to discuss it further with my hospice contact with a view to go in January. Unfortunately she went on long term sick leave so events overtook us. Tracy wanted me to write something here as trying to update everybody is exhausting!

Basically after 5 years of living like this, things need to change. Although my care is done by carers, Tracy is effectively a single parent to demanding triplet boys and still has the emotional burden of my situation and that's not easy. It's difficult enough for the boys losing their dad so we had to review everything to make it easier for Tracy to provide the upbringing they deserve.

There has been a suggestion that I should consider full time residential care home. But I am bitterly opposed to it and I know neither Tracy or the boys are keen on it. The other option is trying to increase my care package and have full-time carer during the day and also have frequent respite breaks at a care home. There is no guarantee this would be available and it's still not ideal; Tracy already finds the carer's presence extremely intrusive so all day carers will only be more so, and I don't relish the thought of being in a care home regularly, but we both know there simply isn't an ideal option and compromises are unavoidable. Ironically I don't think Tracy has had much of a break since Wednesday because of all the meetings and discussions with the hospice and social services services etc.

So I have been here 5 days. I won't pretend it's great here but with my own carers it's been ok. I am going to keep pushing for a similar arrangements for future respite, I must have been dealt with by at least 20 different nurses so far, so a hand over period just isn't realistic. Everyone keeps saying that information gets disseminated, but they just don't get that things need to be shown. People just can't appreciate what it's like to be completely helpless AND have no communication.

I think I am feeling better (it may just be the result of being dosed up on ibuprofen and antibiotics) so hopefully returning home this Wednesday.   .

Tuesday, 27 November 2012

More S**t

My latest problem is getting me down. Until about 10 days ago I was reasonably comfortable in bed but now, every night I start coughing and it escalates for 2 hours after which I am inhaling snot and saliva with every gasp. My face and neck are also dripping in the same. The mucus in my chest can't be coughed up so I just keep coughing ineffectively. It's deeply unpleasant and exhausting but I don't think there is any solution; I already have the bed head raised.

During the day I am also more prone to coughing and I spend all day sitting by my bedroom patio door so I can wedge my feet against it to prevent me sliding down in my wheelchair when I cough. I spend much more time with my head down which enables easier swallowing but I can't use the eyegaze or watch TV. And the effort to lift my head each time is monumental! So I am thoroughly sick of everything.

Wednesday, 14 November 2012

Maximo Park

Last Wednesday we went to see Maximo Park at Shepherds Bush Empire. We saw them about 6 years ago and were impressed with them live. Tracy got the tickets for me as a father's day present back in June.

Shepherds Bush is much nearer than the O2 but parking is a bit of a lottery so I made the extravagant decision of hiring a driver to drive our car, relieving us of the stress of finding a parking space. It proved to be useful. We had been told to use the stage door entrance which was accessible from the rear of the venue. So we drive around to the residential road backing on to it only to find there are no drop kerbs anywhere near the passageway leading to the venue. We have to be dropped 100 yards away. Then at the stage door we are told we can't actually enter there; we were just instructed to go there to collect the tickets and we now needed to go right around to the other side of the building where they would set the ramp up. When we got there I was freezing and starting to shake. We couldn't believe it when we were told they stored the ramp in the toilet, and yes you guessed it..! Fortunately they weren't long and we finally got in.

There is only 1 wheelchair space but it is well placed and although it's at the back, it's a pretty intimate venue. Maximo Park came on at 9-25 and kicked off with two tracks from the new album. Paul Smith is a brilliant frontman and quite mesmorising because you simply ignore the other band members, who apart from the keyboard player remain almost static throughout. For those of you not familiar with them, here's a video of one of their bigger hits

They played until 10-45 and were still as good as 6 years ago. We texted our driver who picked us up and took us home


Tuesday, 13 November 2012

Muse and Top Gear

Two weekends ago we were very busy. We saw Muse at O2 Arena on the Friday and Saturday morning went to Birmingham to see Top Gear Show!

We got the VIP parking arranged again for Muse, so other than the horrible 2 hour journey it wasn't too stressful. We got there with sufficient time to queue in the slowest queue ever for merchandise. People in front of us were actually trying on T shirts for size!

We had seats on the front wheelchair platform and the boys were fairly nearby in the seats behind us. The stage layout was unusual as they had decided to have seating behind the stage at the middle tier. I guess it allowed a couple of hundred extra tickets to be sold but it meant that they built a walkway around the back of the stage and built the sides up high. It meant that the back of the stage was obscured and although I could see the band most of the time, having a huge section of stage side wall my field of vision was quite distracting.

Muse opened the show with a couple of tracks from the new album, off which they played almost every track during the gig. With an increasing back catalogue to choose from, they still managed to include many old crowd pleasers including Jake's favourite, Plug in Baby. Matt Bellamy gave Jake a new challenge by playing the main riff while spinning around with the guitar above his head. I can imagine the carnage in Jake's bedroom!

They played faultlessly as usual with the singer hitting even the most ridiculously high falsetto note. However there is a small part of me that wonders if the 3 of them and the session keyboard player stopped playing, how much sequencers were being used. I think sometimes I would rather hear a less album perfect reproduction in favour of a rawer live sound. Great gig though.

On Saturday we headed to Birmingham for the Top Gear show. I took the boys a couple of years ago when they did both a London and Birmingham show but for whatever reason it's only Birmingham now. But Luke is such a massive Top Gear fan, we decided to go and commandeered my sister's husband David to help with the driving. Our show was at 3-45, so we planned to arrive at 2 to look around the exhibition although by the time actually got in we only had 45 minutes. It turned out to be sufficient as it was much smaller than the Earls Court one. The boys were very happy to see a Bugatti Veyron for the first time.

Our experience of the show's organization hadn't been great so far having been directed to the wrong gate to get dropped off then David had to drive somewhere else to get a ticket for disabled parking.

Next we were ushered with everybody else to the arena entrance only to discover 15 minutes later they had sent us the wrong way and now we had to battle back through the thousands of people behind us to get to the correct entrance! Then we discovered that the boys' seats were on the other side of the arena and not directly behind us as promised when booking. Fortunately David was sitting with them but we wanted to watch it together. So thoroughly unimpressed with the NEC.

But the show made up for it. The first hour had Tiff Needel and Vicky Butler Henderson presenting various races around the indoor circuit which were impressive. During the break we managed to get the boys and David on the wheelchair platform for the rest of the show. The Top Gear gang did a one and a half hour show which comprised of various displays interspersed with the usual top gear cocking around including a hilarious motorbike sidecar football match. The boys loved it and despite the hassles it was well worth going.

Thursday, 8 November 2012

5 Years Ago Today....

It is exactly 5 years since I received my official diagnosis; November 8th 2007. This puts me in the 20% survival group. Apparently 10% survive 10 years so having lasted 5 years, I have a 50% chance of lasting another 5! Anyone reading this who has lost someone to MND within the more typical timeframe might consider me extremely fortunate. And maybe I am, but another 5 years living like this is going to be very tough on me and the people around me.

My progression hasn't been a steady decline but a fairly rapid one for 3 years followed by 2 years of almost no deterioration (although some of the very subtle changes have had significant consequences; losing the ability to drive the wheelchair being the most significant). This pattern isn't unheard of although such a long hiatus is unusual and it does seem strange that it's relented without any apparent reason.

I just wish this plateau had occurred earlier because living like this is so unpleasant. Being confined to a wheelchair because of being unable to walk is an absolute breeze compared to the other losses and it's last on my "fantasy cure" wish list behind talking, using my arms and eating & drinking. I consider being unable to walk a mild inconvenience in comparison. Although at my diagnosis consultation 5 years ago, being told "confined to a wheelchair in 12 months is possible but almost certain in 2 years" was devastating. It just goes to show you how 'acceptance' is such an important approach with this disease. After 5 years I have certainly, although not consciously, changed my outlook from "dying from MND" to "living with MND". My thoughts are no longer dominated by thought of dying but instead I just remind myself occasionally that this plateau isn't indefinite.

With the possibility of living or rather existing like this for some time, I know I should fill the days with something more meaningful. Despite my criticism of Stephen Hawking, I have to give him credit for what he has achieved and it does make me feel guilty that I am wasting the time I have. I think my coping strategy is partly to blame. When life has for 90% of the time shrunk to the confines of sitting in one place staring at a screen, haven't had a proper conversation for 3 years or tasted food or drink for as long, I think it's inevitable that one's psychological state changes. I have always thought that the song title Comfortably Numb is the best description. A state of mind that is doesn't register disappointment, frustration or sadness. One that has become conditioned not to care too much about anything, because you don't miss something you don't care about. It's kept me sane but at the cost of becoming apathetic and devoid of enthusiasm.

Theoretically I can do almost anything on a computer that anyone could, albeit slowly. But mustering enthusiasm is difficult. One thing I have been doing is helping the boys with their latest obsession; a computer game called Minecraft. It's obviously very addictive and involves building worlds with friends online. At least it isn't violent. But there are countless modifications and add-ons available which involve varying degrees of complexity to install. Recently I setup their own server so they can host a world which their friends can connect to, which has given them some kudos. I would rather they didn't spend so much time on it but it's about the only thing I can help them with and it's nice to see them excited about a new mod I have installed. I would like to teach them how to do the modifications themselves but although I can write instructions, the process can vary and eyegaze typing is just too slow in a training situation, especially when you are dealing with an 11 year old's patience levels!

So it's not quite solving the mysteries of time and space but it gives me a sense of purpose.

As for the future; well statistically there is more chance of surviving another 2 years now than there was in 2007. And I am not sure that's necessarily a good thing.


Tuesday, 6 November 2012


Tracy's brother Jeremy is raising money for the MNDA by participating in MOvember, which if you don't know, involves growing a moustache throughout November . Hopefully apart from raising money for the MNDA we can look forward to some amusing facial topiary!
He told me if he hits £1000 he will sport a Village People design (ok, he didn't but we can hope).
If you would like to support Jeremy visit


Thursday, 11 October 2012


On Tuesday we went to see Radiohead at the O2. There was the usual trepidation about the event; organising late carers, the journey and the parking. The disabled parking arrangements are a complete joke with only designatd spaces in the standard car parks. Granted, they are positioned at the end of the car park nearest the arena but still about 300 yards away. So the combination of the bumpy pavements, steep slopes at a pedestrian crossing and cold and wet weather with the computer, make it virtually impossible. Having used VIP parking previously courtesy of Tracy's brother, we had contacted customer services a couple of months ago to get permission to drop off at the VIP walkway. Unfortunately we discovered that the person who agreed to help had left, so Monday was spent trying to speak to someone who could authorise it and we finally got a call at 7pm from someone who could, and did! We are very grateful for effectively being given  VIP access but the O2's standard disabled parking arrangements are disgraceful. It was the first time I have been to the O2 in the new car and it is a big improvement over the VW.

There is always a massive sense of relief when we finally take our seats, and at the O2 the front wheelchair platform is very close to the stage and easy to access. Radiohead came on at 8-45 for the start of a two hour set. To be honest, I had doubts about how much I would enjoy the gig as I only really like the first three albums before they embarked on the 'up their own arse' era and they don't usually play much of the older stuff. But they were excellent and although they indeed played mostly newer tracks they sounded great (although the massive cheer at the beginning of the 4 or 5 older songs, suggests I am not alone). The 3 encores were somewhat contrived; I think I prefer the Manic Street Preachers' "20 songs, now piss off home" approach to planned encores.
We are back in a couple of weeks for Muse which will be awesome, the boys are coming too. Then we have Maximo Park, Skunk Anansie and Band of Skulls over the next few weeks, phew. .

Tuesday, 25 September 2012

The Highlight of 2012

On Friday we went with the boys to highlight event of the year. You may recall the marshall called Adam who we met at the supercar day and subsequently arranged the trip to Lotus F1. Well he had been trying to arrange another visit somewhere even more exciting and 2 weeks ago he got it sorted. A visit to see the car collection of Pink Floyd's drummer, Nick Mason and possibly meet him too.

So we went Friday afternoon. The boys were equally excited at the prospect of meeting a celebrity who had been a guest on Top Gear (he lent them his Ferarri Enzo for a review). For me it was more about meeting a member of one of my favourite bands since the age of 16. We arrived at 3 and parked up outside one of the garages and within seconds the sound of 3 very excited boys could be heard as they clapped their eyes on the contents of the first garage.

When I arrived after being unloaded from the car, Jake Luke and Daniel were sitting in their choice of automotive exotica. And there was Nick Mason looking on, completely unphased by the fact that Luke had his hands all over his £25 million Ferarri GTO.

The next two and a half hours were spent looking at some amazing cars and chatting with Nick and Mike (who works with Nick and coordinated the visit with Adam). The boys sat in every car without their owner batting an eyelid or whincing as car doors were opened to within millimetres of its neighbour. The boys were in fairness pretty well behaved, and preceded all of their endless questions with "excuse me Mr Mason"! I think he quite enjoyed seeing the cars being enjoyed and appreciated so much. Luke even knew the bhp figures of some of them.

I really didn't expect Nick to give up his entire afternoon for us and we were made to feel completely welcome throughout. It felt rather surreal chatting and drinking tea with a member of one of biggest bands ever and also provided the soundtrack to my adolescence.

Before we left, the boys were each given a lovely book on motorsport history which Nick signed, giving them a great souvenir of a brilliant afternoon. Many many thanks to Nick and Mike for giving me the best day in a very long while and giving the boys a wonderful memory.   ,  

Monday, 24 September 2012

Goodwood Revival

On Sunday I took the boys to Goodwood Revival with my sister and David. I have gone every year since 2009 and it was the only racing event this year having decided that the Festival of Speed and British F1 Grand Prix were going to be too much. And I only decided to go To Revival a few weeks ago after thinking I could be dropped outside the main entrance and just view from the wheelchair viewing platform nearby.

Having arranged the morning carer for 7 30, we managed to leave at 9 30 and arrived at 11. Goodwood staff hadn't been been particularly helpful in the preceding weeks regarding dropping off so I told David to just follow the Chauffeur Drop Off signs until we got stopped which we eventually did and got directed across a field (which the dropping off plan was meant to have avoided!) However the next marshall was very helpful ad they let us drive upto the main gate.

Once in we headed to the wheelchair viewing platform on the pit straight. I already knew that without the offroad wheelchair I wouldn't be able to negociate the perimeter path to the previous years' vantage point on the grass bank from where you can see much more of the track. But at least the platform was big enough for everyone to join me. As other wheelchairs left during the afternoon I manouvered into a spot where I could look down the track and also see the video screen. There were the usual idiots that decided perching on wall in front of me was a great location for taking photos; they were quickly told it wasn't! Later I felt a little guilty asking my sister to ask an old couple to move. They had sat on the wall, to take the weight off their feet and thought it was a good view so stayed there. The whole point of a wheelchair viewing platform is to give people whose eyeline is 3 feet off the ground a chance of seeing something so I get pissed off with anyone who can't grasp this concept.

Anyway the afternoon was great and the boys enjoyed it too, particularly Luke who had beforehand claimed it would be boring because "all the cars are old"! But Luke has become a walking Google when it comes to car facts, so when 16 Ferarri GTO's appeared he soon worked out that he was looking at £400,000,000 worth of cars. It wasn't actually a race but a parade of the largest gathering of GTO's in history. Some of them were in a later race with a grid worth £100M. Other races included 50s and 60s Le Man and Grand Prix cars as well as a liberal sprinkling of classic Bugatti, Masserati, Lambourghini and Aston Martin.

The weather was perfect; mild, dry and overcast (sun is a pain with the eyegaze). On previous years we have gone around the paddock but this year they weren't giving public access until later and with carer times in mind, we headed back.

Thanks to Sue and David for taking us all

Tuesday, 18 September 2012

My Poem

nothing's too much hassle

when you first get MND

don't hesitate to ask for help

from lifts to cups of tea

with life expectancy so short

we'll do everything we can

to make the little time you have

not just go down the pan

excursions out or just drop round

to give you company

not just good intentions said in vain

but actioned faithfully

throughout I've made an effort

at self sufficiency

I hate to be a burden

on friends and family

the DSS do all my care

its a time consuming job

hours and hours are spent each week

to hoist me to the bog

or connect my stomach feeding tube

to tasteless liquid feeds

no gastronomic pleasure

just dietary needs

Schoolboys' bed times, carers changing

inflexible routines

are a selection of the downsides

for choosing this regime

most of what I need to live

is arranged by your's truly

using email, text and skype

it's all arranged by me

But it minimises impact

on those who otherwise

would have to wash and wipe and feed

and not live out their lives

I'm not trying to be a martyr

I like being in control

and not experiencing the guilt

of burdening another soul

but for a while I've noticed

that people have grown bored

I wasn't meant to live this long

I have become a chore

my dependency on others

is greater than before

so my need for help and favours

is only getting more

scintilating conversation

won't happen in the main

you'll have to drive my wheelchair

I know that's quite a pain

Maybe you feel awkward now

seeing me this way

but you know as well as I do

inside, not much changed

Although our lovely garden

is great for sitting in

5 hours a day, most days a week

appeal soon wears thin

I don't want anybody

to feel they're duty bound

to take me out, amuse me

or even come around

but it would be great occasionally

to go where there is life

beyond the pond and guinea pigs

it really would be nice

I realised that I have lived

past my expiry date

its quite an inconvenience

more time you'll have to wait

In the meantime, don't forget

what you said back when

and text or mail or skype me

occasionally now and then

this poem's not for everyone

no names I need to say

there's really no hard feelings

well not yet anyway!

Thursday, 13 September 2012

My USB Wheelchair

one thing my eyegaze computer has always lacked is mobile internet connectivity. I won't bore you with the whys and hows but adding a usb 3g device isn't possible. So not being easily defeated I went about it from a different angle. Several companies make personal mobile 'hot spots' which are basically battery powered wireless access points with a 3g sim card. Upto 5 people can connect similtaneously. This meant I wouldn't need a physical Connection but just use wireless.

The mobile hot spot is tiny and fits in the small pocket on my feed pump bag. The rechargeable battery lasts a respectable 5 hours and it kept me online during my recent holiday. But it had to be taken out to charge everyday and I had to remember to put it back every morning. I wanted a it permanently powered and attached to the wheelchair, ready to use whenever I need it. So the next step was to get a usb power feed from the wheelchair. The most flexible way to achieve this was to get a power adaptor from the wheelchair to a standard 12v cigarette lighter socket then buy a £3 usb power adaptor to plug into it. A company called Smile Rehab made me the wheelchair power adaptor which plugs into a spare socket on the wheelchair's DX bus. Hey presto, usb charging facilities and internet access when I am out and about.   Thanks to Smile Rehab for making the unit so quickly and to Stuart for attaching it all!

Thursday, 6 September 2012

First Day at Secondary School

Yesterday was a landmark day for me as much as it was for the boys. Like the London Olympics, I didn't expect to see it back in 2007. I remember my first day at secondary school very clearly and the 7 years I was there doesn't seem that long ago. I would never agree with the "best days of your life" saying, (although compared to current circumstances they are pretty high up the list) but it was the backdrop to several significant 'firsts'; first car, first girlfriend, first excess alcohol consumption being amongst them. I am sure those particular events are inextricably linked but now is not the time to go there. Anyway, the boys returned unscathed and had enjoyed it so I hope the next 7 years are as memorable for them! .

Monday, 3 September 2012

Dorset 2012

Just returned from our Dorset holiday and I am pleased I went. As previously, we went with my mum, sister, brother-in-law and nieces Alisha and Lauren (and my carer)

I probably enjoyed it more than last year because I had fairly low expectations after last year which was so disappointing after our first visit in 2010 when I still had indepenent mobility in my brilliant offroad wheelchair and some strength in my neck. Last year was just depressing! The new car definitely helped although the necessity for the farm owners to dig water run off ditches across the quarter mile track every 20 yards, was a twice daily ordeal for me and the underside of the car!

Other concerns had been regarding the hoisting and the suitability of the bed. At home I have been determined to keep using a standing hoist despite the best efforts of my occupational therapist and care agency to consign me to a full hoist. But we can't rent a standing hoist so I have to be fully hoisted for a week. This requires a different type of sling. Although I have these from previous holidays, The one for using with the toilet now needs a head support but the OT refused to fund it because she considered it unsuitable and suggested doing a 2 stage transfer via the bed. I pointed out that I would spend the entire day being transferred and had to fork out £160 to get the sling I wanted. It was perfectly suitable. I had also bought a wedge to raise the mattress for my head. It worked fine but I needed to make other alterations to allow me to push my feet against something. I had it right by the 4th night.

The weather was as disappointing as the rest of the this summer's. The days it didn't rain were still windy and cool, particularly on the coast. We had 3 days at various beaches but I found it difficult trying to keep warm with a constant bracing wind blowing, and any sheltered spots inaccessible to wheelchairs. We didn't manage to sit out in the evening either.

Saying all that, the boys had a great time and managed to get through their wish list; trailer tour of farm, nighttime wildlife safari (spotting badgers, deer and snakes), marshmallow bar-b-q, building a bonfire and going to the amusement arcade at Lyme Regis. We also managed a trip to the Haynes Motor Museum.

For me it was nice having everyone around and things to watch other than the garden.


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.


Monday, 25 June 2012

The Supercar Day

Yesterday we went to Dunsfold Park Aerodrome (better known as the Top Gear test track) for The Supercars Event. It's a charity day for The Childrens' Trust where owners of performance cars give their time and tyres taking people on laps of the circuit. We had booked the boys for 2-30 and arrived at 1pm. I had expected about 10 cars or so, but there were more than that number of Ferarris! There must have been 30 or 40 cars, including lambourghinis, Mclarens, GT40s and Aston Martins and not to forget the TVR Tuscan like I used to have :-(  . I had emailed the company organising the event last week to enquire about access and the MD, Bachi had responded saying they would do everything possible to get me in a car. I knew it wouldn't be possible but it was a kind offer.

The boys went off to choose their cars and while doing this, Tracy got chatting to a marshall called Adam about our situation and he was absolutely brilliant. He let us into the paddock and stayed with us all afternoon! He made sure I saw the boys in their chosen cars, arranged a group photo with the cars after and then introduced us to the drivers of some of the best cars. So the boys got to sit inside some serious exotica including a Lambourghini Aventador (that'll be £300k sir) and a £1M Ferarri Enzo. I felt like the event was for MY benefit. Daniel and Luke had their laps in an Aerial Atom (not the most expensive car but pretty exhilerating) and jake chose a 430 spider driven by a very nice chap called Dave.

The Enzo owner was also a lovely chap but I was a bit worried as I had parked the wheelchair 6" away from his car and it was still set on full speed as he approached to say hi. I knew that he would do the usual greeting gesture of touching my right hand which is always well meant but often gets the person's foot run over as they inadvertently push the joystick forward. This time I was less worried about him limping for a week and more worried about footrest shaped holes in the carbon fibre of his motor! Thankfully it was a light touch that only moved me a fraction.

The boys loved it and it was their first experience of circuit driving and although I don't think any of the drivers were pros they seemed to be giving it plenty of beans. We were SO lucky with the weather; if it had been wet it would have been stressful and pretty miserable. But it was one of the most enjoyable days in the last year. It's an annual event for a great cause so put it in your diary for next year.

Just checked your bank account Luke; only £999,974.54 to go


Monday, 11 June 2012

Still Here

Again it's been a long time since posting last. I guess it's a combination of not much happening and not wanting to post another whinge about everything. So without going into great detail, outings have included a cinema trip with my sister to see Salmon Fishing in the Yemen, a couple of trips during the 10 days that was apparently our summer to bushy park and a visit to my MND mate, Liam. So the new car isn't getting much use at the moment.

Our 'summer' was a chance to get outside although I really struggle with 28 degrees. But it seems it's that or 14 degrees and wet. The recent Jubilee celebrations were a welcome change to the repetativeness of the usual routine. As anyone who read my facebook comment will know, I wasn't able to join Tracy and boys on their trip to watch the Jubilee Pageant because of the transport logistics and the likelyhood of seeing anything from a wheelchair. Obviously watching it on TV was drier and warmer but it was yet another event which would have been nice to experience and share with them.

On Tuesday we had our street party and despite being the wettest day of the weekend I was able to attend, sheltering under one of the many gazzeebos which had been erected. It was well attended but unfortunately the rain eventually dampened most people's spirits by about 5pm although I was one of the few that made it until 9pm (determined to make the most of an event literally on our doorstep)

I have just reached the 6 year mark according to my stick man on Patients Like Me website. After a fairly typical steady decline over the first 4 years, my FRS has been static for the last 2 years. My score of 12 primarily propped up by respiritory function (although I reckon my FVC is well below 40% I don't use any ventilation or experience shortness of breath yet) I don't know why my progression has almost halted but I am not complaining as I know it won't last forever. There has been deterioration in the last 2 years, not reflected in FRS but still impacting life significantly. But it's still strange why this is happening. One example of a subtle change was experienced yesterday. Lifting my head up after dropping it forward to swallow has been increasing in difficulty but yesterday was the first time I just couldn't do it. I have already devised a pad to prevent my chin dropping completely but I think I will have to get some type of head tether. Another stylish accessory!


Wednesday, 16 May 2012

My Eyegaze Presentation

This is presentation I wrote last year for Sensory Software. I posted the video element of it previously but this is the full presentation. There are a couple of technical wobbles but bear with it. It's about 20 minutes long so is primarily intended for anyone considering eyegaze and it includes information regarding the implementation of the system with the stages of development involved. I appreciate that the Windows control section of the video is, on the face of it, rather tedious but try to remember EVERYTHING is done using eye control and nothing else.


Thursday, 10 May 2012

Monday, 30 April 2012



Thanks to all 453 of you who have watched my eyegaze video!

Sunday, 29 April 2012

All change again

I am feeling REALLY low at the moment. One of my main carers left yesterday and the other is likely to soon so I have a new carer. I can't describe how utterly difficult, stressful and isolating this is. The person you spent six hours a day with, who knows every detail of many complex routines, who knows every subtle grunt or gesture and is your main companion during the day, vanishes. Then a stranger who knows absolutely nothing apart from the basics which they sometimes remember from a brief shadowing process steps in. The transition gets harder each time as my routines get more complex and my ability to communicate diminishes.

I know its difficult for the new carer and I try to be as patient as possible, laboriously eyegazing additional instructions, tips and the occasional encouraging comment after any stressful scenarios. But the expression "losing the will to live" is, in my case, said without any exageration or humour. And although, even with an established carer, interaction is mainly limited to functional requirements (witty banter is somewhat limited), one still develops a personal/professional hybrid relationship with them (due in part to the intimate nature of some of the care). So when they leave it's impacts emotionally to a degree also.

Friday, 27 April 2012

My Eyegaze Video

This is a video I made with fellow MND sufferer Liam and his friend Bernard. It will hopefully feature on the MNDA's website soon. I have to admit feeling rather hypocritical regarding its optimist comment (having been publicly very critical of the MNDA for their awareness campaigns being focused on optimism, instead of the hideous nature of this disease) but I guess it's a price I am willing to pay in return for publicising what is achievable when only your eyes work. To counter the hypocracy, I am still badgering the MNDA to make a TV ad which will tell it straight with a realistic narrative and no mention of the word optimism!

Monday, 9 April 2012

Holidays, Wheelchairs and Automobiles

The new car arrived during March and conveniently coincided with the sale of the VW for which I got a reasonable price. I was quite proud of myself buying and selling the cars fairly independently using my eyes, with Tracy only having to be involved with test drives and handovers. The Fiat Doblo is a big improvement over the VW although I am still at the mercy of G-forces. I have been out several times including a fairly long run to the banger racing at Aldershot yesterday with my mate Stuart.

I am still in two minds about the Dorset holiday in August. The journey will undoubtedly be easier and the half mile pot holed track at the farm will be a little less tortuous but I will have to take my indoor wheelchair which is pretty hopeless on anything other than completely smooth ground. Anything else has to be traversed at a snails space. I am going to spend the whole time asking to be pulled up in my seat. Even the grounds immediately outside the cottage, particularly the sloping bumpy garden is going to be tricky. Factor in some bad weather and it doesn't get any more appealing. But then staying at home alone except for a live in carer isn't very appealing either. I just don't know.

The reason I will have to take the indoor wheelchair is that the Doblo won't accommodate the larger offroad wheelchair. I knew this was a limitation when we bought the car and I haven't used it for almost 6 months so in practice it was of little consequence. Having lost the option to take the offroad wheelchair anywhere I have reluctantly sold it. It was collected yesterday and it was depressing seeing it go. Apart from a couple of stressful flat tyre incidents, it was a massive part of my life during 2009 and 2010. I reckon I covered well over 1000 miles in it and it gave me independence and freedom; it was effectively part of me and I absolutely loved it. I had lost the ability to use it long before yesterday, but nontheless seeing it go still felt very sad. My world has contracted massively without it and although at the time, taking myself to hampton court or bushy park got a little monotonous I would give anything to still be able to do it.


Monday, 19 March 2012

Another Ineffective Awareness campaign?

I will probably be flamed by the MND community for writing this but whenever I read about a new awareness campaign my heart sinks. Actually no, my blood boils. I have been living with MND for 5 years and am now paralysed from the neck down and can't speak or eat. For the first couple of years I was enthusiastic and optomistic about improving awareness and was involved with fundraising and offered myself to be the subject of a campaign. But I have become frustrated with the MNDA's approach to improving awareness. Nothing is changing but they persist with the same ineffective strategies. Ask 100 people if they have heard of any of the previous campaigns or the personalities behind them and I doubt if any have. Asking 10000 will probably not reveal many more, and those that do recall them probably only know of them because of a personal association with the disease. We need a national radio or tv campaign. Yes, it isn't cheap but my efforts (hours of laboriously eyegazing letters) with ideas of raising money specifically to fund such campaigns have been effectively albeit politely deflected. I am convinced that awareness is no better now than 5 years ago and it will be no better in another 5 years if the approach to campaigns doesn't change.

Sunday, 11 March 2012

Great Music for a Great Cause

This is the first song an album from a fellow MND sufferer. Have a listen, I really like it. The rest of the album is also pretty good. Follow the link to download it and your £7 will benefit Alistair and the MNDA


Wednesday, 7 March 2012

Band of Skulls gig

Last night we went to see Band of Skulls at the Roundhouse in Camden. Tracy had heard a couple of tracks on XFM and bought tickets as a joint anniversary present. To say that they are Southampton's answer to The White Stripes or The Raconteurs makes them sound a bit naff but they really are as good.

I wasn't looking forward to the journey across London to a venue we hadn't been to previously but although it took an hour it wasn't too bad. Journey quality is measured in slippage distance within my wheelchair seat. This was about two inches compared to the O2's six. It also helped that after ignoring the satnav's recommendation to go through Kingston's congestion, it actually took a sensible route all the way.

We arrived during the support band's set and Band of Skulls came on around 915. They only have 2 albums' worth of material so we knew it wasn't going to a long gig. They sounded great and although only a three piece band, didn't have to resort to backing tracks or session musicians to sound impressive. The boys enjoyed some of it but we find it frustrating that they aren't more enthusiastic about seeing bands live when they are playing themselves. Maybe taking them to Muse for their debut gig was a mistake!

They played until 1045 although we left before the encore to avoid the crowd. The journey back was going well until we discovered the link road between the westway and shepherds bush was closed. This gave the satnav the perfect opportunity to ignore a simple diversion in preference for a 15 minute tour of the local speed humped, residential roads.

A good night though and I reckon you might here more about this band in the future.


Wednesday, 22 February 2012

IT support required

I don't want to turn this blog into a technical support forum but I would appreciate people forwarding a link to this post to anyone with good IT knowledge because this has me stumped.

I have a Netgear 632 router but it intermittantly either locks up or drops internet connection and requires physically turning off and on. So I bought a Netgear 834 router, configured it identically and connected it. Everything worked fine initially, then I noticed one computer had frozen. After much troubleshooting I confirmed the following. The computer only locked after login, between 30 seconds and a couple of minutes after. Its totally frozen with the clock stopped. Switch back to the 632 and no locking up. Next I tried a Cisco x2000 router and exactly the same problem. As the Cisco had wireless I disconnected the network cable and connected wirelessly. Same problem! I have several XP computers on the network and they are all fine. All routers are configured identically as DHCP servers. The computer in question is running service pack 3 and works perfectly when the Netgear 632 is used. Could it be a tcpip driver or stack issue; do all network connections, wired and wireless share the same driver? Why would it work with one router but not others? At least the fact that wireless networking is also affected rules out any physical causes such as cables, switches etc.

So, any ideas?


Boys' Birthday

The boys had their 11th birthday on Monday. They were a bit put out because it's the first year it's landed in school term time instead of the half term. Luke in his inimitable manner has researched the calendar until 2017 to confirm it doesn't happen again; it doesn't!

They didn't have a party but instead are having sleepovers. They are spread over 3 weeks and the two boys not involved will stay at aunty sue's and grandma's to protect our sanity. Luke has already had his and confirmed what a misnomer the term 'sleepover' is! Unbeknown to us he told his friends that if they wanted to bring presents just to bring cash and now has an envelope with fifty quid in it. That's m'boy.

Tracy's family came over on Sunday and the boys got their eagerly anticipated stunt scooters. They also got some ramps to use with them. Finally they got Nerf Stampede guns which, as anyone with boys of a similar age will know, is the king of foam dart guns. We now have 180 darts distributed around the house. Judging by the quantity lost in inaccessible places after the first day, I reckon I will avoid having to buy the eighteen replacement D-size batteries!

On Monday my family came over for the second round of presents. Their cousin Alisha had made an absolutely brilliant Monopoly cake (the boys favourite game at the moment). It seemed a shame to cut it.

Regarding my computer virus, I think this afternoon I finally cracked it. I had a root kit virus, a dns virus, a svchost virus and a couple of trojans. fortunately it was only internet affected so I have also spent the last 2 days remotely configuring and updating my spare tablet which I was going to swap this with allowing me to fix this remotely and not while it was my primary eyegaze system. My last blog explained the risk involved. Anyway hopefully I won't need to swap it now but its good to have the spare system upto date. Thank christ for dameware remote control software it's the DBs. I reckon it might be a world first, remotely controlling a secondary eyegaze system using eyegaze control on another computer! My eyes are knackered!


Saturday, 18 February 2012


Today I have felt not just low but quite scared. It was triggered by my eyegaze system getting a virus. It's a nasty one that redirects website searches to bogus sites and prevents access to antivirus websites or the installation of any antivirus software. I have successfully removed similar viruses on other computers using eyegaze remote control but attempting it on the eyegaze system itself is highly risky because the process of attempting the virus removal could knock out the eyegaze control, rendering the system unusable and leaving me locked in with no method of communication or environmental control. Despite this I started running some utilities to identity and remove the virus. Initially everything went smoothly, then a reboot was required and the eyegaze didn't restart.

A feeling of panic washed over me, that cold wave that you feel when the policeman holding a speed gun steps out in the road and flags you down. After some thought and managing to get my carer to connect a mouse, she managed to interpret my grunts, clicked on a few things and eyegaze functionality was recovered. The feeling of relief was immense, the feeling you get when you realise the policeman is pointing at the car behind you! But my euphoria was short lived when I put what had just happened into perspective. Yes, the demise of my eyegaze system is somewhat more catastrophic than a similar fate befalling your average PC, but worse things can happen. Being done for speeding isn't really that serious if you're about to drive over a cliff.

Having had over a year of progression stability I have allowed myself to succumb to a state of denial. Writing about ventilation and end of life issues is one thing, accepting that they ARE going to happen is very different and I am not sure I have yet. And if I felt panicked about the computer, how will I cope when the cliff edge comes into view.

Thursday, 9 February 2012

one of those days, again

I am having one of those days which makes the big decision mentioned in the previous post much easier. I am being forced by the care agency to abandon the standing hoist and have 2 carers and a full hoist. This isn't just inconvenient it fucks everthing up because there can no longer be any flexibility on when I get up, go to bed or when I use the toilet, everything will have to timed to when the second carer is here. My remaining leg strength will deteriorate rapidly without the excercise of the standing hoist. It is entirely unnecessary but if they insist on it, I have no choice.

I have had a crappy cold and although it's getting better I am still snotty. I am frequently choking on saliva and the subsequent coughing results in a torrent of snot from my nose, saliva running down my chin and neck and me sliding down in the wheelchair to an uncomfortable slumped position. This invariably occurs 5 minutes after the carer has left. During the coughing I usually bite my tongue and inside of cheek causing them to swell, ensuring that I continue biting them for the rest of the day.

Then there are computer issues. The boys computer is overheating and its power supply is tripping from being overloaded. The other computer has suddenly stopped recognising firewire devices so we can't capture video footage for editing. Apparently it's a common XP problem but nobody has a solution. These problems are beyond eyegaze controlable remedies and the guy who I occasionally get in is permanently tied up at work.

I feel like throwing in the towel, everything is so f***ing difficult


Thursday, 2 February 2012

Decisions, decisions

Yesterday I had an appointment at the Royal Brompton Hospital which I had been getting stressed about. Not because of the appointment itself but because of the journey and uncertainty about parking etc. More on this later but the journey helped me make the first of two big decisions.

On Monday I tried a new car. It has the advantage of having it's wheelchair space in the front which would potentially be much more comfortable. I was hoping for either no improvement or the ride quality of a Bentley, making the decision on spending £25k easy either way. Of course it was neither but the improvement was significant and despite knowing the VW will only fetch £15k, I have ordered it. There was added pressure because if we wanted to avoid the 4 month delivery time we had to secure one of only two suitably spec'd cars in UK stock. The conversion still takes 4 weeks so I will hopefully have it mid March. The boys are mortified by the thought of being seen in a Fiat Doblo and I can't say I blame them. Five years ago I was looking forward to taking them for a spin in a TVR about now.

Okay, back to the hospital appointment. I was going to see a respiratory consultant with experience of tracheotomy procedure and ongoing care

I wanted to get more information on tracheotomy so I can make an informed choice when the time comes. I understood it can involve a lengthy hospital stay but I had heard anything between several days to a couple of months. Then 24 hour care is required at home. This is obviously the biggest consideration as this would require a full time carer. But my limited experience of NIV suggests I will need similar care arrangements as I unable to adjust the mask and if I start choking on saliva, I will need assistance. So I don't know if the care issue will be any different. I will try my NIV in a couple of weeks time once my physio has been trained to adjust the settings under guidance but I find it difficult to envisage using it overnight unattended. So it might not be a question of whether to have a tracheotomy but whether to have any ventilation assistance. With my FVC already below 40 it's a choice I might need to make quite soon. It's actually been fairly stable for 18 months after a steady decline during 2009 and 2010 but I have known of people where respiritory function worsened considerably without warning.

The consultant agreed with most of my points and reiterated the cost and carer requirements involved in 24 hour care. He likened it to flying an airliner; most of the time there isn't much to do but when something goes wrong, you need someone who knows what to do! I think it was a useful meeting but it hasn't made the decision any easier. The journey back got off to a bad start. As I drove the wheelchair into the car, it turned itself off and wouldn't turn back on. To make it worse, I was only half way in and in a position where the top of the boot opening prevented me lifting my head to operate the eyegaze and communicate with Tracy. I needed to explain how to switch the chair into manual mode so she could push it. A total catch 22 situation. Tracy had to hold my head as high as it could go and fortunately my eyes were just picked up by the camera and I could just about manage to type a few words explaining where the levers were. Tracy managed to push the heavy chair into the car. The journey back was horrible. With no power on the wheelchair I couldn't tilt it back so the slightest movement sent my head flopping forward and I spent most of the 45 minute journey home with my chin on my chest and my neck strained.

So my hospital visit helped me make the decision on the car but I still have a much bigger decision, the ultimate decision, to make. And if the non-invasive ventilation proves difficult without full-time care it is a decision I will need to make that much sooner. I really don't know what I should do. It's easy some days to think "OK I have had enough and if there was a button marked 'EXIT' I'd push it" but faced would I? Living with ventilation may not initially reduce my quality of life much further than it is already. But it is likely to impact other people more. The intrusiveness of full-time carers, the management of multiple carers when I can no longer do it. Does the benefit to me and my family of being on ventilation outweigh the burden. Non-invasive ventilation could extend life by 1 or 2 years and a tracheotomy considerably longer, at least theoretically. But is it fair to put everyone else's life on hold for the duration. This illness has already deprived the boys of a normal childhood. I know they haven't wanted for anything materialistically and maybe they have learned some things as a result of the situation, but on balance they have lost significantly more than they've gained. Is it fair to continue to subject them to this situation throughout their teens. What price will they pay just for me to see them grow up. If I choose not to vent then they will have to deal with bereavment sooner but they can move on afterwards. Is that going to be better for them and Tracy for whom all of this equally applies.

When the time comes to decide, will I be able to take others need into account anyway or will the self preservation instinct overwhelm every other consideration. Is it fair anyway to base the decision on others needs or at least doing it with their knowledge, or does it just burden them with guilt. Although I have focused in this blog on the impact of others, it's not an attempt to appear noble or selfless. It's because these are the only consequences that are fairly certain. I don't think I will know what I want from a selfish point of view until it happens and as I have already said, this might result in a decision that is far from being either noble or brave.
It's not a subject one can canvas opinion on. It's a decision only I can make and it makes the decision about buying a new car pale into insignificance.


Thursday, 19 January 2012

Blimey, that took a while!

January is over half way through and again a blog entry is long overdue. Having missed the Deep Purple gig in November, it was a relief to get to the Manic Street Preachers gig just before Christmas. The one off gig playing all 38 singles was excellent and quite impressive considering they played for over 3 hours with only a 15 minute break. The O2 arena was obviously chosen to accommodate the demand for such a one off gig and it looked pretty sold out but I don't think they suit arenas. They don't 'do' big stage shows like they don't 'do' encores. Fortunately we had got the front wheelchair platform so it still felt quite intimate. After, one of the stewards approached us as the boys were scooping up the thick carpet of paper snow (created by the confetti canon during the Design for Life finale) and throwing it over everyone. Instead of getting the expected repremand, he handed us one of the set list sheets from the stage; a cool souvenir which has subsequently been framed.

Christmas was fairly successful and probably one of the least stressful in recent years in terms of the 'morning present frenzy, afternoon overtired tantrums'! Also contributing to relative calmness was the boys choice of presents being primarily DVDs which require no assembly, no batteries and aren't tied down with 50 twist ties!

In fact I praised Daniel several times for his behaviour over the two days. He put himself in charge of 'present distribution' on both days, ensuring everyone had a present to open and didn't just tear open his presents, obliviously. A sign of maturity and associated selflessness or was there an ulterior motive at play; who knows but we'll give him the benefit of the doubt!

This year my family came over on Christmas Day and Tracy's on Boxing Day. My carer kindly agreed to come later on both days so I had an extra hour in the evening. Aspects of it are always difficult; watching Christmas dinner being eaten, being unable to go out, conversation, interaction with the boys etc. Nothing different to every other day but the occasion accentuates everything so it's like having my nose rubbed in it. Tracy and the boys went to see the Slava Snow Show at the Festival Hall between Christmas and New Year. I didn't go for the usual transport and logistical reasons. It's such a shit being unable to go to events in which I can participate equally with everyone else. The uncomfortable car journey is only half the problem. Equally difficult is any outdoor wheelchair journey in the cold; my body goes rigid and I get the shakes, both causing me to slide down and potentially out of my wheelchair.

New Year's Eve was spent doing the usual watching crap on TV and watching the London fireworks on TV from my bed.

So another year survived, roll on 2012. Despite the difficulties, I still like Christmas and always feel down at the beginning of January. This year it's been compounded by such a long period of being confined to the house. The daily routine has been reduced to 9am to midday - getting up, midday to 4pm - sitting in bedroom on computer, 4pm to 5:30 - carer is here, 5:30 to 9-30pm - watch TV in lounge then bed. It's pretty mind numbing after a while but I don't think there's much alternative. The combination of a life limiting illness and a few quid in the bank should be the recipe to living life to the full, the perfect scenario to complete one's 'bucket list'. But in practice, it doesn't work like that.

Moving on, the boys are progressing with their respective instruments although I think we are some way off their next completed song. Here are some recent (but probably not their best) performances.

Daniel had his class assembly today which I went to. The subject was 'heroes' and Daniel read out that I was his hero. It took all my effort not to cry. This is what he wrote;

With last year's efforts to improve the car's suspension being largely ineffective, I am now looking at a replacement vehicle. There is a company which specialise in vehicles where wheelchairs can go in the front where the ride should be considerably more comfortable. It will have to be a big improvement to justify the £10k cost to upgrade from the VW. Obviously I use the term 'upgrade' very loosely as it's hardly a step up from a VW to a Fiat Doblo which will see it's residual value freefall from day one. As I said it will need to be good