Thursday, 3 April 2014

Just like old times.... Almost

The last time I went to the Southbank in London was when I could still take myself up there in my offroad wheelchair about 3 years ago. Since having a live-in carer, trips out have been possible but I haven't ventured to London.... until yesterday. I guess it's a number of factors that dissuaded me. Since October it's been either too wet or cold, and before that I had worries about wheelchair battery life. However with recently fitted replacement batteries and the new eyegaze system no longer needing to use wheelchair power for 6 hours, wheelchair range is much better.
So yesterday I decided to return. We drove to Hampton Court station where there are very conveniently placed disabled parking spaces, hopped on a train with the help of the train's guard and was at Waterloo 35 minutes later.

The wheelchair was reasonably comfortable getting to the southbank because the pavements are pretty good and Kadvi is a great wheelchair driver, knowing when to support my head. I still miss the comfort and speed of the offroad wheelchair but I don't miss the constant terror of the dreaded puncture. So with one eye permanently on the wheelchair battery level lights we headed for Tate Modern.

charge indicators on wheelchairs are pretty hopeless. When the first of six lights goes off you haven't used 1/6 of the charge but around 60% which means you better be already on your way home when it goes off. We made it to the Tate fine.

We only spent about an hour looking around, not wanting to push our luck. It was nice having made it there again albeit not under my own steam anymore. As always I can't help feeling many of the exhibits fall into "The Emporer's New Clothes" category;  people marvelling at a blank red canvas, 3 rocks placed on the floor, or a video of a blue screen with someone reciting some jibberish.

Anyway, with all battery level lights still on, we headed back to Waterloo. The whole process was pretty easy, the wheelchair range wasn't a problem and the weather was perfect. All that pollution kept the sun off the eyegaze ;)

So I am planning The Shard next

Eyegaze Mk2

After 7 months of battling I have finally received my new eyegaze system. The NHS have now allocated specific funds for providing specialist communication devices but the processes for accessing the funding haven't been in place until this week. So the MNDA agreed to rent the system until the NHS purchase the system outright for me.

The system arrived 2 weeks ago and it's working great. It's not hugely different from my previous system but it's not got the faults ;the batteries last 6 hours instead of 2 minutes, the sound is much higher quality, screen is much brighter and touch screen works. It has a solid state hard drive which apart from being much more robust than a traditional hard drive is also lightning fast, resulting in reboots taking 30 seconds instead of 3 minutes. This might seem unimportant but two and a half minutes is a long time when you want to say something. It also has a webcam so I can video skype.

The only issue is with the eyegaze camera. It didn't work outside which is obviously a big problem. I have been talking to the camera manufacturers in Germany who have been incredibly helpful as this is a new problem. So with my assistance they released a new software version within 24 hours which has improved things considerably and further improvements will be developed soon.

Many thanks to Liam and Caroline for their help getting this sorted

Sunday, 26 January 2014

A message from my brother-in-law

Hi everyone, on April 13th I will be running the London marathon.Hopefully with your support I aim to raise as much money as possible for the MND association. If you would like to sponsor me you can go to my Just Giving website or click on the link .Or you can text me if you wish. Your support, even if it is just to wish me luck would be very much appreciated.  Thank you. 

Sunday, 5 January 2014

It Didn't Take Long ....

Didn't take long to find something to whinge about in 2014 although it's bugged me for ages; disabled parking

The blue badge scheme is a great idea but it is subject to so much abuse and misuse, its value is undermined. There are 2 obvious problems and 1 more controversial one. First there are the people without badges who are simply too f***ing lazy and selfish, so simply ignore the restrictions. When I could still speak I used to enjoy challenging these people just to hear there excuses and watch them squirm! The most frequent response was "oh sorry, I didn't realise it was disabled" or "I was only going to be 5 minutes". Even if in the unlikely event of this being true, it's of little consolation when I arrive during those 5 minutes and can't park. The next offending group are those with legitimate blue badges but seem to have forgotten the disabled person! These people are harder to challenge because the number of excuses is greater and occasionally more plausible, such as they're picking up the disabled person, to which you can't really argue, although 95% of the time it's total b******s

I HAVE actually challenged someone using eyegaze computer voice, but eyegaze typing doesn't lend itself to arguments and they are long gone before I have finished typing "you are a selfish c***"!

The final problem is more controversial. I have lost count of the times I have been sitting in Bushy Park car park and seen cars with blue badges park next to me, and someone emerges with the tiniest of limps and proceeds to walk a mile around the lake. I don't want to get involved in a cripple competition but it does annoy me. It's not such a problem in car parks with multiple disabled parking spaces but when the single space outside a London theater has been taken by a "limper", it is infuriating

I don't know what the answer is, I have thought maybe they should introduce a two tier system which helps ensure the most premium spaces can only be used by the most needy. I guess it's too costly and complicated to achieve and like many of those limpers do already, people will simply exaggerate their disability to get the higher level. While on the subject of questionable applications for a blue badge, there is a more serious implication of exaggerated claims. Because one of the criteria for a blue badge is qualifying for the higher level of disability living allowance, it means many people will be receiving several thousand pounds each year with questionable legitimacy.


Saturday, 4 January 2014

Happy New Year

Well, looks like I have made it into another year. Have to say I am glad to see the back of 2013. There were highlights including fabulous weather, a very enjoyable cruise and finding an excellent live-in carer. But the year was marred by the totally unnecessary and intrusive dealings with social services. Anyway that's all finished now so hopefully 2014 will be an improvement

We had a good christmas with both of our families visiting. This was the 1st year that the boys weren't up before daylight opening Father Christmas' presents (they probably twigged several years ago). We had a nice afternoon with my family, and played a couple of games in the evening before watching Dr Who. The school holidays have dragged . I could sight the atrocious weather as a factor, claiming the boys would have otherwise been going out on their bikes or playing football in the park. But in reality I doubt if any of them noticed the rain or wind because like most 12 year old boys, they are too busy worshiping Xbox, the god of gaming.

New Year's Eve was the usual affair of watching Top 50 whatever programmes before watching the fireworks. I managed a tiny alcoholic tipple courtesy of an oral syringe, the 1st drink in 3 years !!

So with that, I wish you a very happy new year


Thursday, 28 November 2013

My Cold War

Some people have asked me what I thought about the hospital's response to my questions. Well, I guess I was hoping for a little more insight into the prognosis based on the outcome of others who had experienced similar plateaus. Even if we do represent only 1%, that's still around 40 people in the UK. I think consultants are just reluctant to speculate on such things. And, in fairness I didn't specifically ask about prognosis.

So winter has arrived (yes I know it's not officially until 21st December, but being friggin cold and depressing is a good enough to constitute it being winter) and I am not (why isn't there a shortened version of "am not" apart from "ain't", which I hate. Why not "am't", it would save me time! ) looking forward to the next 3 months. Apart the practical issues of going out this time of year, it's also much more difficult to muster the enthusiasm or effort to go out when it's cold and grey. The thought of sitting in the car in bushy park car park sometimes just isn't appealing enough. I have become better equipped recently with my Russian hat, but a cold wind is still a show stopper.

Stefan Evanski fighting his personal cold war 

Indoor destinations are obviously better but I struggle to think of many locally; there's only so many times one can go to Mercedes World or Brooklands within 3 months. I would like to get up to London again and go to the museums and Tate Modern but going by car is too difficult for the carers, not to mention me. I have considered going to the Tate by train, I think my wheelchair batteries could manage the return trip along the Southbank. Maybe if we get a sunny mild day with the guarantee of no rain, I will attempt it.

But the place I miss the most is my favourite part of the UK; North Wales. Specifically the location of many wonderful holidays both as a child and more recently in Penmaenmawr. It has been around 4 or 5 years since I last visited but I think that returning is very unlikely. The 4 hour journey would be very tough but the accommodation would be the biggest problem as I need both a standing hoist and full hoist, so I think it's just too difficult.

Penmaenmawr from the stunning Sychnant Pass