Saturday, 26 February 2011

How to spend 2 hours achieving nothing with O2

Welcome to O2. Someone will start chatting with you soon.

You're through to Rick.

Rick: Hi I'm Rick. How can I help?

steve evans : hi, I have two pay as you go sims *****163950 and *****803582, the 582 number is my main texting sim and I want to keep this number and have the benefit of no expiry time on the credit. The 950 number has mobile internet services. I really want one sim with my 582 number and mobile internet. Ideally I would like neither text or mobile internet allowance to expire until the credit has been used, but I certainly don't want text allowance expiring. I am severely disabled and unable to speak so can only discuss this by email. What is the best way of achieving what I want

steve evans : I type using my eyes which is very slow, bear with me

Rick: I'll help you with it.

Rick: I can transfer the entire allowances from your number *****163950 to the number that you wish to keep *****803582.

steve evans : ok, and the 582 number will then be 3g enabled, yes?

Rick: Yes, that's correct.

steve evans : will either data or text allowance expire after 30 days

Rick: I'll arrange it so that you can use them till 30 days.

steve evans : but I don't want texts expiring after 30 days, they don't now - I only send a few each month

Rick: Okay, let em check.

steve evans : thanks

Rick: My pleasure.

Rick: I'll be right with you.

steve evans : ok

Rick: Is there anything else I can help you with?

steve evans : not at the moment

Rick: It was great chatting with you.

Rick: Have a great day.

steve evans : e what is the answer

steve evans : about text allowance

steve evans : hello

Rick: Yes.

steve evans : what is the answer about text allowance

Rick: What we can do is simply add the text allowance to this *****803582 number, would that be okay?

steve evans : but do they expire after 30 days

steve evans : they don't currently

Rick: Ever tariff that you're on expires after 30 days.

Rick: You get free text messages once in a month on your anniversary date only.

steve evans : I can still text using unexpired credit after 30 days, I just lose the unlimited feature

Rick: Yes, I'm sorry about that as this is as per our tariffs and this tariffs give unlimited text messages for 30 days only.

steve evans : but why am I able to currently on the 582 number

Rick: Let me take care of that for you.

Rick: Before I do that, can I know your current credit balance?

steve evans : I don't expect unlimited texts after 30 days but I do want to be able to use unspent credit

steve evans : let me check

Rick: Sure.

Rick: A great way to check your balance is by entering *#10# and pressing your send button. Your balance will then be displayed on your screen.

steve evans : 35.92

steve evans : I am using dongle, not phone

Rick: Thanks. I've just added unlimited text messages that you can go ahead and start using with your Pay & Go SIM card with number *****803582

steve evans : great and the 3g data has been enabled and allowance transferred?

Rick: All SIM cards are 3G enables and you'll have no trouble using the Internet on it.

Rick: As you other SIM card with number *****163950 is a mobile broadband SIM card, we'll not be able to transfer the allowances.

steve evans : is the 582 number now on your system, I couldn't add data credit earlier

Rick: Just for you I've added unlimited Internet for you on this number *****803582.

Rick: You can now go ahead and start using unlimited text and unlimited Internet.

steve evans : brilliant thanks, will this sim work ok in usb dongle

Rick: You'll not be able to use it in the USB dongle as it's a Pay & Go SIM card.

Rick: You'll have no trouble accessing the Internet in your phone.

Rick: My pleasure.

steve evans : but I don't use a phone I use a dongle!

Rick: Let me take care of that for you.

Rick: I've just added 1GB free just for you that you can use for the next 30 days.

Rick: You can go ahead and use this SIM card *****163950 with your dongle.

steve evans : brilliant, how do I add more later

Rick: Sure, let me get a link for you.

steve evans : its not 950 but 582 sim

Rick: Yes, that's the same one you'll be able to Top-Up 1GB with. I'm just getting that link for you.

Rick: You can click on this linka nd you'll be able to Top-Up your number ending in 950.

steve evans : you just said 07592163950 in dongle but its 07729803582

Rick: Let me tell you that you'll only be able to use the SIM card with number 07592163950 in your dongle as it's a broadband SIM card.

steve evans : aarrgghh.. The point was I wanted to retain my 582 number and have broadband facility on it

Rick: It's just that the Pay & Go number 07729803582 can't be transferred to our mobile broadband service.

steve evans : I currently use 582 in a dongle for text

Rick: You'll not be able to send any text messages from 07729803582 from your dongle as this will only work in your Pay & Go mobile phone.

Rick: You'll only be bale to use 07592163950 in the dongle.

Rick: I've just added 1GB that you can use for a month on 07592163950, you can go ahead and start using it.

steve evans : so, if I change my number to 950, which is a pain, and use the broadband sim for texts will I have the 30 day limit on credit useage

Rick: I'm sorry as we'll not be able to change either of the numbers for you and you'll need to use them both individually.

steve evans : I meant if I start using the 950 sim for texting will I be able to use unused text credit after 30 days

Rick: You'll not be able to use the unused text after 30 days but you need not worry about that as you can simply come back to us and we'll add it for you again.

steve evans : ok, appreciate your patience even if I haven't really achieved what I wanted

Rick: It's been my pleasure.

steve evans : ok bye

Rick: Is there anything else I can help you with?

steve evans : you are a brave man!

steve evans : no thanks

Rick: My pleasure.

Rick: It was great chatting with you.

Thursday, 24 February 2011


I have made a decision. I am going to sort out this awareness issue. I have banged on about this before but I think something has to change. Awareness won't cure MND directly but with better awareness there is more chance of raising funds which will fund research, which WILL result in a cure - one day. Also and almost as importantly MND sufferers will get immense satisfaction from seeing their plight brought to the masses. No longer will we have to sit in our wheelchairs, paralysed, tube fed and silent while we watch campaigns and hear about scientific breakthroughs in cancer MS or HIV. Of course many more people are directly and indirectly affected by these illnesses but for the 4500 of us MND sufferers in the UK, that fact is irrelevant.

The MNDA has limited funds and can only allocate a small percentage to awareness campaigns. My viewpoint on their previous campaigns is likely to upset the parties involved but I see no point in everyone patting each other on the back when nothing is improving. One campaign featured an advert with an acted MND sufferer being thrown around the room by an invisible force and losing clothing in the process, leaving her at the end, sitting in a wheelchair in her underwear.

The fact that I didn't feel it represented what MND is like to suffer is irrelevant, but the fact that it was considered by the censors to be to be unsuitable for TV transmission and only got limited exposure in some cinemas, meant it was a missed opportunity. Last year's campaign called the Incurable Optimist was a web based campaign as well as billboard posters.

I liked the campaign, and Patrick, like Sarah in the other campaign are remarkable, inspiring people. I am not criticising them for a second, but I suspect that the only people that have heard of them, noticed the campaign at the time or can recall it now are MND patients. And we are perfectly well aware already, thanks.

So what is the plan. There needs to be an ongoing campaign and there is only one way to get people to notice and that is a powerful TV advert. I know this is ambitious, but I don't believe it's impossible. At this stage I don't have many details but preliminary research suggests that if you avoid the absolute prime slots, you can get a 30 second slot on ITV1 for between 2500 and 5000. If you go with ITV2, 3 or 4 the costs (obviously as are viewers) are significantly lower.

Its not cheap but look at it like this. If everyone in the UK with MND contributed £10 a month it would raise around £500k per annum. I appreciate that for some people would not be able to afford it, but then again most patients will have friends and family that would also contribute. Surely it would be possible to get 5-7000 contributors. This could fund an advert 3 times a week during the early evening. Sure, it isn't going to saturate the airwaves but it would be a vast improvement on the current situation.

All this is embryonic now; I have some good ideas for a powerful advert and I might know someone that can make it. I don't know if commercial TV advertising departments would accept such a diluted schedule or how to contact the potential contributors.

Maybe this is unrealistic, I don't know but I am frustrated that since being diagnosed, nothing has changed. I haven't heard it mentioned on TV, let alone a feature on it! The only references I can think of are comic references to Stephen Hawking, which leads me back to an earlier entry. In business you learn that outcomes never change if your strategy remains the same and this is no different. MND has been known about for over 80 years but because of relatively low levels of research there still isn't a single drug that has any real impact. If nothing changes I can't see that anything other than minimal benefit treatments for the foreseeable future.

I would be interested in everybody's opinions and advice.

Sunday, 20 February 2011

A Busy Decade

The boys are 10 today, I am writing this in Pizza Express while everyone is eating. I had been worried about potential meltdowns from certain quarters; Luke had already received his present back in November - the drum kit, and Jake simply couldn't think of anything he wanted other than his Gibson Explorer guitar which at £1000 wasn't going to happen. There can't be a better, or should I say worse indicator of having spoilt ones children rotten, when they can't think of anything they want for their birthday. So we had said we would give him money to put towards something. But I wasn't convinced that a piece of paper with Natwest and some writing on would really cut it as Daniel took delivery of his electric scooter. Similarly, I was fairly sure that the novelty of Luke's drums would have worn off by now and we were going to have two disappointed boys.

I needn't have worried as they have only played with one thing all day; the Nerf guns from their uncle Jeremy. I am just waiting for the arguments about who's nicked who's ammunition. I have just noticed that Daniel has written 'D' on all of his (and probably a few of his brothers'!)

My family came over and joined us for lunch (where I started this) and we have just returned home for the birthday cake made by their cousin Alisha.

With everyone together we took the opportunity to get a family photo. Our friend, Ros came armed with a decent camera and turned photographer for an hour.

By 6:30, most of the Nerf foam darts had been lost, so while they settled down to watch a birthday present DVD, I went on ebay, arms dealing and battle will recommence around Wednesday depending on the post.

Friday, 18 February 2011

and finally tonight....

just watching Million Pound Drop or as I like to call it, Thick People Watching Money Fall Through A Hole, who could think that Bob Geldof was 78 years old and Xanadu was an African city!

A week in the life

It has been a busy week. Last Friday Adam took time out of his photographic commitments to go to Beaulieu Motor Museum. Despite being well known as being a petrolhead, I hadn't been before. With good traffic it was barely ninety minutes away so we were there by 11-30. It made a nice change to my usual groundhog day lifestyle although it was a little disappointing. There were refurbishment works underway which closed off about a third of it, but even taking that into account, considering it is the National Motor Museum it is fairly small with probably barely 80 cars. There are nice grounds and an abbey but the wet weather prevented much exploring outside. They have a new Top Gear exhibition with many of the daft cars created over the last few series.

We attempted to go to Bucklers Hard, "a unique 18th century village where they built warships for Nelson's navy", that's what the website says anyway, I will have to take their word for it because it started pissing down 30 seconds after we bought our tickets, and so we just headed back to the car.

Adam continued to have unerring faith in his Tomtom sat nav despite its 'Tour of the Southeast' route home from Duxford in December. This time it avoided a free flowing eastbound M27 in favour of 20 minutes of heavy traffic and 12 sets of traffic lights in a selection of Hampshire towns, before recommending we rejoin a standstill M27 in the wrong direction! It must have been the heat radiating from my exasperated expression that prompted him to turn round in time to see me frantically shaking my head!

I think that Adam just forgot to disable the 'double your journey time to maximise travel time billing to clients' setting.

Anyway it was a very enjoyable day out, so thanks Adam.

We had friends over that evening and having been out for the day I was in a better frame of mind and contributed a little more to the conversation than I had a week earlier. Tracy and the boys went to her mum's on Saturday so my mum anwd sister came over in the afternoon. Although a little chilly, we were able to sit in the garden.

On Wednesday , another friend Stuart came over for lunch for a couple of hours and later it was off to watch Daniel's class assembly.

On Thursday we met up at Wisley with some fellow Rasberries (Ripple - Cripple)! I always feel somewhat ambivilent about these meetings but usually end up enjoying them. This time, rather than doing lunch (a completely pointless arrangement for two of us and probably not much fun for the other two) we met for coffee and then made a nuisance of ourselves by clogging up the butterfly house with a four wheelchair convoy.

Having managed to operate the wheelchair at Beaulieu I was hoping to be able to do so at Wisley. But it soon became difficult and Tracy eventually had to take over, which was depressing. Although there is a positive side to meeting with fellow sufferers, I also find it difficult. I met Pauline and Liam shortly after my diagnosis, pauline already had been re-diagnosed with a less agressive form of MND and a few months later Liam was also re-diagnosed with a less agressive form albeit different to Pauline's. So 3 years on, my progression has caught up and significantly overtaken theirs. That is difficult in itself, but then I feel guilty about the resentment I have. Obviously it is the resentment that I am not like them as opposed to them not being like me, but that distinction can sometimes be blurred. Steve G. is the fourth and most recent addition to the Rasberries and is at a very similar stage to me. However I am aware that he was diagnosed more recently than me so can appreciate how he must feel. I know that they all read this so I hope they don't my frankness on the subject.

Sunday, 6 February 2011

No Laughs Here I'm Afraid

I have always tried to tell it like it is on the blog. And this entry won't be any different. Although, other than venting on here I don't constantly bitch about things, I also won't just answer "fine" if someone asks how I'm doing. I will tell them it straight and if they would rather not know, they won't ask again. I was asked this question last night by friends we had over, and despite spending 5 minutes writing my answer, it still only brushed the surface of my current outlook on life. So this blog entry is what I am going to refer anybody who asks in the foreseeable future.

I am sorry that it somewhat destroys the image many of you have of me; coping with MND with stoicism, unbeatable determination and spirit. The fact is at the moment I have simply had enough. Nothing dramatic has changed, not even anything significant enough to affect my Functional Rating Score (FRS), but subtle changes in several areas have had a compounded effect. The FRS is what I and the medical profession use to measure the disease's progression. When diagnosed in 2007 I had a score of 46 out of 48. Last January it was at 28 and this January it is 13. Technically it is possible to be alive with a score of zero but I also know people (one personally) who died with a score in the mid twenties.

The fact that I am writing this while Tracy and the boys are out dog walking with friends exposes the first significant new problem; insufficient strength to use the controller on my outdoor wheelchair, the singularly most important bit of equipment after the eyegaze system. Trying to find a solution such as a lighter controller has proved impossible so far, and looking at replies to emails you would think I had asked to land my wheelchair on Mars. This could well prove to be easier. My enthusiasm for pursuing it further is running out in the knowledge that any solution will cost several grand, take two months to get and will be unsuitable two months later.

Our cruise isn't for another 4 months and I should be looking forward to it but the thought of having to be pushed around by the carer everywhere is simply horrible.

I won't be able to take myself out when the weather improves, a situation which I had suspected in October would happen. Other developments are less obviously significant. Movement in bed has almost completely disappeared. I can no longer drag hands up to rest on my chest, which is the most comfortable position to go to sleep. I woke last night a little short of breath and felt almost completely paralysed, I couldn't even move my head to operate the backrest recline control with my nose.

Being put to bed at 9-30pm, often before even the boys have gone up makes me feel like I am living in an old people's home, or like a naughty boy sent to bed early.  It was my decision to have external carers and I am still of that view, and the disadvantages are outweighed by the benefits for both me and Tracy.

We had friends over last night, we don't see them very often and it was nice to see them but I can't pretend I enjoyed it, I just don't seem to be able to 'make the best of it' anymore and being forced to go to bed two hours before they left actually seemed an easier option. Seeing Daniel giggling with excitement as David ran around with him on his shoulders should have made me happy, but I just felt bitter that it wasn't my shoulders he was on.

If you are reading this David, its my problem, not yours; so don't not do it next time.

But the sum effect of everything is difficult to bear at the moment as I just can't focus on much that's positive. Since starting writing this an hour ago, 50 people in the UK have died. Some will have been sick or old but others will be younger than me and will have got out of bed this morning, expecting to be getting in it again tonight. So I guess I should be grateful that today I am not one of them, and at this precise moment I am, but sometimes these days I am not always so sure. And the thought of in the near future having a ventilation mask, requiring two carers to move me and losing the final ten percent of any muscle strength doesn’t give me much reason to expect anything different.

Friday, 4 February 2011

Wheelchair mobility vanishing Part 1

On Sunday we took the boys to a horse show at the O2, it was booked mainly because we had missed the one at Olympia in December through a combination of snow and illness. We had picked an afternoon performance to avoid the hassle of getting back late without a carer to help with the bedtime routine. The O2 is usually an easy venue to get to. Surbiton to Waterloo takes 20 minutes, transfer to Jubilee line and journey to the O2 is 30 minutes and level wheelchair access throughout. But on arrival at Waterloo we heard that services just been suspended due to two faulty trains. The only other option is the bus; total wait and journey time, one hour fifteen minutes. I can't deny that without the bus option we wouldn't have got there, but buses have always been my least favourite form of public transport. Whether being held up by them when driving or sitting on one, enduring the most protracted, indirect route possible between two places, they are awful things. The only time I have ever been glad to see one was when walking home from Kingston in the rain after six pints of London Pride.

Anyway on Sunday it was the first of several things to spoil my afternoon. Havlng been cooking on the bus for an hour my arm had seized and been sapped of any strength I had left. I managed to manouver off the bus but once out, I simply couldn't apply sufficient pressure on the joystick, and Luke had to drive it for me.

By the time we arrived inside the arena, we had already missed fifteen minutes. with no house lights on we were quickly led to our seats, and in the darkness drove into a metal barrier. My eyegaze system mount took the brunt of it, causing the whole thing to be pushed six inches towards me.

So the rest of the first half of the performance I couldn't enjoy as I was completely preoccupied with 1) contemplation of the end of independent mobility; 2) How, with my eyegaze completely out of position, I was going to communicate with Tracy at the interval and explain what happened and how to fix it and; 3) whether anything had been damaged and the resulting hassle and cost to replace it. Also having lost eye control the system was randomly doing things so I was worried it might just start reading something aloud or deleting files. I managed to recline the wheelchair sufficiently to just get my eyeline low enough to gain some control and put it into sleep mode.

At the interval I managed to say "pull back" and I was back in control and fairly sure no serious damage had occurred. So with just my impending immobility to dwell on, I was able enjoy the second half a little more. The show itself was OK, I probably wasn't in the right frame of mind to give it a fair appraisal, but for the money it lacked much spectacle. I am sure that the horsemanship was world class, but it was all a little repetative. Nontheless, thanks to Tracy for organising it, and a sarcastic thanks to the overpaid, incompetent tube workers who are more interested in striking than maintaining their trains.