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Watched a thoroughly entertaining match at #Twickenham, obviously with the right side winning!
Then we went on to #Caribou to listen to a progressively energetic live set of mesmerising grooves. Was treated to a chance encounter with some lovely school friends.
A thoroughly good day/night.
After catching up post Sweden I’m getting in to some interesting projects regarding elliptical curve cryptography and web development using AngularJS and the robot test framework.
Enjoying lots of social events in London including thirtieth birthdays and England and Scotland at Twickenham this coming weekend thanks to Sean and Dominic for the tickets then to see Caribou at Brixton in the evening.
Planning holidays to Scotland, Italy, Switzerland, Ibiza and possibly Cuba over the next year.
Best wishes to all
Off to Sweden on Saturday, hopefully bi-skiing and if not then just ski-karting. very excited…
Posted by: Tom in: news
Reads like a scary science-fiction novel, we are getting closer but don’t think I’m up for volunteering yet. Still sounds a bit invasive for my liking.
Posted by: Tom in: news
super excited about another jampacked year including the following treats:
caribou / 14 mar, above and beyond / 4th apr, John Hopkins / 24th apr – Brixton O2\ Academy
going to Sweden in February to do some bisking
(potentially Ibiza), Italy and Switzerland in June and July
So at the moment it’s working hard with challenging new cloud-based work project, managing the challenges of care continuity & some interesting side projects regarding disability, accessibility and brain-computer interfaces.
Very much enjoyed watching three incarnations of “the curious incident of the dog in the night-time” by national theatre productions, which Ellen has been very much involved in alongside lead designer Bunny Christie. The Cottesloe (dark and intimate), Gilgud (glitzy and spectacular) & Lowry (emotional and immersive) have each housed enchanting but very different productions with completely separate casts.
Best wishes to all in 2015
Posted by: Tom in: news
Good on Jenny, running a huge long way for the benefit of newly injured tetraplegics trying to adjust to a difficult but potentially still very rewarding life. Jenny is a very special lady having helped us through a lot of hard times and was maid of honour at our wedding.
Please give generously for a great cause if you can.
A short post to reflect over the Christmas period.
It’s been quite emotional to see all of the family and friends that I don’t get to see for most of the year and to reflect with them about the past. Celebrating a little too much with friends has been lots of fun but the serious part has been being reminded that the challenges have not been unsurmountable and that we can look to the future with confidence regarding the challenges ahead. My mum and dad will both be retiring within the next few years and this will bring new situations and possibilities which I look forward to.
Self reflection has brought me some sad moments over the past few weeks as it sometimes does when I stop and do a reality check. Reality of disability is a “hard pill to swallow” when I consider my limitations and lament over the activities I can’t do and objectives that I can’t reach. Then it’s time to get back to realising those that are achievable and being glad of what I have.
I’m glad that Christmas and New Year have enabled me to appreciate my brothers,sisters and father and mother (and in-laws), my raison d’être and some very special friends. I feel blessed.
there will be an article about Ellen and myself in the Oxford mail tomorrow if anyone is interested
Really sad to hear about the passing of Stella Young, enjoyed watching her voice her opinions on disability and perception.
“Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young
The idea that we should be actively trying to encourage the public to raise their expectations of what disabled people should be able to achieve will help us lower the barriers of social isolation that confront the disabled population every day. Given sufficient resources the vast majority of disabled people can be as productive members of society as the rest of the non-disabled population.
“I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.” – Stella Young
what a spectacular couple of days, visited number 10 Downing Street yesterday to meet Samantha Cameron and have a tour. We were extremely privileged by being given the permission of Mr Cameron himself to visit the Prime Minister’s office as well as the Cabinet room, chancellors meeting rooms and the rest of the ground floor of Downing Street. Mrs Cameron was delightfully engaging and displayed a wealth of knowledge and interest in a number of really important issues in discussion with the “real-life” winners of the cosmopolitan awards. She was very flattering and actually called me “very handsome” when talking to Ellen and I. Of all the incredible peeople I have met I think the most inspirational person has to be the wonderful Kirsty Howard, if you don’t know who she is then you should… Google is your friend.
Posted by: Tom in: news
We have had an amazing couple of days being pampered with gifts and an award, for the love story category in the Hearst Company’s Cosmopolitan Magazine Ultimate Woman Awards 2014.
Yesterday was the award ceremony where we were made aware of many real issues being faced by people in the world including forced marriage, detecting and fighting cancer, youth violence and living with undiagnosed life-threatening disease. It was nice to meet celebrities taking it seriously and the inspirational people involved in the campaigns.
We were presented with the award and it was lovely to see our love and appreciation for life reflected by the audience.
Thanks to all the events team including Rosie, Jean, magazine editor Louise. Really enjoyed meeting Fearne Cotton, Pixie Lott, Tulisa, Danni from “The Script”, Millie Mackintosh and the wonderful inspirational Kirsty
Enjoyed seeing the feisty Mel B and McBusted in the flesh and love that Louie Walsh told me I “did a good job”, good complement from such a well-respected but ferocious critic.
photos to appear shortly on Flickr
Great to hear good things about the backup trust’s valuable mentoring service in the Guardian newspaper. Good Work Guys
lots of love and gratitude from Ellen and I
Posted by: Tom in: news
enjoyed every minute of last night’s gig in Brixton, Flight facilities bringing some fresh music and great Aussie vibes. Great to meet you guys. enjoy the rest of the tour
conscious I haven’t updated in a while
really enjoyed the backup charity ball, great chance to catch up with friends and raise money for a great cause www.backuptrust.org.uk
very busy with interesting work and tight deadlines, web development is interesting due to fast technology changes
planning Ellen’s 30th celebrations which should be good fun
looking forward to family time over Christmas and Gigs including “flight facilities”, “basement jaxx” and the big 7 rugby game at Twickenham
all the best.
Posted by: Tom in: news
Unfortunately the below letter was refused and deemed not sufficient to open a review on the case!
To whom it may concern,
I’m writing to request a review of the refusal of appeal for case number xxxxx. The following is a copy of the reasons for refusal:
The Apellant said that he stopped in an emergency to unblock his catheter. The Authority rejected the representations, pointing out that somebody boarded the vehicle.
The Appellant appealed, he added that he was picking up a specialist carer.
The Appellant did not explain why he could not have found a lawful parking place to clear his catheter. He has not explained the co-incidence that he stopped in an emergency (i.e. no choice as to the location) but at the same time picked up a passenger. When one views the CCTV recording, one can see that the passenger walked towards the Appellant’s vehicle when it pulled up but instead of boarding the vehicle straightaway, especially when there was supposed to be an emergency for which her assistance would have been valuable, she stayed on the pavement attracting the attention of passers by and engaging in conversation with them. This did not fit with the account.
I am not satisfied that there was an emergency situation. I am refusing the appeal.
Mr A Non
In response to this explanation I would like to firstly concede that there was not sufficient explanation provided in my appeal. It is a complex situation and a significant amount of explanation is required.
Tetraplegia is a medical term describing the health condition of someone living with paralysis that affects all four limbs. A significantly risky feature of tetraplegia is called autonomic dysreflexia which results in heightened blood pressure occurring very fast which is not self-regulating and can lead to aneurysms and other blood pressure related injuries. Most tetraplegics carry Infedipine, a medication that can be used to regulate BP in these situations to avoid associated health risks (although when taken can result in a side-effect of significant headaches). One of the most common triggers of autonomic dysreflexia is the blocking of indwelling catheters, this can be due to a buildup of calcium -related sediment within the catheter. Due to the lack of weight-bearing in tetraplegics experiencing paralysis, reduction of bone density via decalcification results in extra sediment being passed in the urine and can result in regular catheter blockages. As stated earlier if these are not rectified quickly via a bladder washout or catheter change, the tetraplegics can experience autonomic dysreflexia and dangerously high blood pressure levels in a very short period of time (a matter of minutes).
The above description of the condition and related side effects should be sufficient to explain the emergency experienced and the need to stop immediately. As I am unable to detect the level of urine inside my bladder, when the catheter blocks it is impossible to detect immediately and only when the pressure inside the bladder results in the triggering of autonomic dysreflexia manifesting itself in sweating, skin redness and intense migraines am I able to detect that something is wrong.
As a result of my complex medical condition and inability to use any of my limbs I’m attended by two live-in carers 24-hours a day. These carers are trained by a specialist agency to deal with health concerns of a person with a spinal injury. On the day in question I was travelling with a single carer and my wife in my car after having dropped off a carer at her chosen destination and was en route to pick up her replacement. The catheter blockage occurred close to our destination but before we could find a suitable parking place, hence the emergency stop. The carer already inside the vehicle had already started to perform the procedure of a bladder washout and my wife contacted the carer waiting to be picked up to inform her of our location. The carer awaiting pickup walked to our car and waited as we finished the required procedure (which can be safely performed by a single trained person).
It should be understood that although the consequences of mishandling such an emergency situation are great it unfortunately is not an uncommon occurrence and as such it is often rectified in a calm manner by a single individual. Such an event does not necessitate everyone associated behaving in a panicked manner. In fact it is desirable for those nearby to behave normally.
Many thanks for your understanding.