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.   ,  

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

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!

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!
 

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! .

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.


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