I have Motor Neurone Disease and my weakening muscles had made travelling in my wheelchair in my VW Caravelle extremely uncomfortable. I had always been aware of how terrible the suspension was; it managed to combine the worst traits of both an overly soft and hard setup, crashing over every bump and ridge while rocking horribly over uneven ground. I didn't hold much hope of finding a solution when I typed "suspension modifications" into Google.
Aurok Ltd were one of the few companies that came up so I dropped them a quick email. Within a couple of hours I had received a reply from Dave, the Managing Director offering to come up two days later to look at the problem. My requirements for suspension modification were rather different from most of Aurok's clients. I was impressed by the response as the company aren't just some garage doing run of the mill work. They are the UK sole distrubutor for leading manufacturer Ohlins, and are involved in designing suspension setups for many types of motorsport including A1GP (F1 without the egos) so modifying my Caravelle wasn't going to be the most lucrative deal for them.
After test driving it, they agreed that it was pretty poor and although it was never going to ride like a Bentley, they could probably improve it to a degree with some specialist dampers. Understanding the difficulty in us getting the car to their workshop, they offered to complete the work here when the parts arrived. Yesterday they returned and completed the work. As anticipated the improvement is subtle and I will need a longer journey to judge fully but it's definitely better and Dave offered to return if necessary to adjust them further.
I know that based on what they quoted that they can't have even covered their costs and I am very grateful for the effort which they have gone to. They obviously empathised with my situation and reacted as quickly as possible without taking advantage financially. It is so refreshing to deal with people with this attitude. Being disabled, one gets used to paying massively inflated prices for any product because it has 'disabled' in it's description or contend with delays which I literally haven't got time for.
So a massive thanks to Aurok for helping me keep mobile for a bit longer.
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Saturday, 29 October 2011
Friday, 21 October 2011
I agree with Ewan Mcgregor's piece of advice.... most of the time
Its been a while since my last blog, getting started on an entry is the biggest barrier, especially if there isn't a specific subject I want to vent about. But I don't want let it slide to a solitary monthly entry because people will stop following it. So I am afraid this entry is being driven by this rather than any inspirational thoughts or events.
Let's start with the MND. I am still 'enjoying' a period of relative stability. My Functional Rating Score has been 12/48 since July 2010 and whilst there has been some deterioration over this period, nothing dramatic has happened. Unfortunately some of the subtle changes still have significant consequences; the strength in my arms might have only changed by 20% in the last year but it has severely impacted on wheelchair operation.
I don't know if this plateau is just one of those that can happen with MND or is related to the drug trial. The latter seems hard to believe as for the first 8 months of the trial there was no slowing of progression. Hopefully the trial participants will soon be told the findings of the initial 18 month trial period and which group each were in. So this may provide an explanation, and in the meantime I guess I should try and be grateful; another person I knew locally died 2 weeks ago. He was the third this year and just one of the many that have gone from the online community. I just wish this respite in deterioration had happened while I could still talk, eat & drink or use my hands; just one of those would have done.
Throughout the first year after diagnosis and for much of the time when I was steadily declining, the thought of dying was never far from my mind. And while that sounds pretty unpleasant, it does help one come to terms with the inevitable conclusion. Of course I still think about it but it hasn't dominated my thoughts to the same extent. After a year of living in this state, I am more preoccupied with the monotony of everything and forfeiting so much. Four years ago I had conditioned myself to the fact that I wouldn't be around in 4 years time and this in hindsight was overly pessimistic. More recently my worry is enduring another few years like this, as if that is the worst case scenario. There are certainly times when dying seems a preferable option but on balance I would normally go with Ewan McGregor's advice and "choose life". So when the more likely scenario dawns on me again, it hits that much harder.
Let's start with the MND. I am still 'enjoying' a period of relative stability. My Functional Rating Score has been 12/48 since July 2010 and whilst there has been some deterioration over this period, nothing dramatic has happened. Unfortunately some of the subtle changes still have significant consequences; the strength in my arms might have only changed by 20% in the last year but it has severely impacted on wheelchair operation.
I don't know if this plateau is just one of those that can happen with MND or is related to the drug trial. The latter seems hard to believe as for the first 8 months of the trial there was no slowing of progression. Hopefully the trial participants will soon be told the findings of the initial 18 month trial period and which group each were in. So this may provide an explanation, and in the meantime I guess I should try and be grateful; another person I knew locally died 2 weeks ago. He was the third this year and just one of the many that have gone from the online community. I just wish this respite in deterioration had happened while I could still talk, eat & drink or use my hands; just one of those would have done.
Throughout the first year after diagnosis and for much of the time when I was steadily declining, the thought of dying was never far from my mind. And while that sounds pretty unpleasant, it does help one come to terms with the inevitable conclusion. Of course I still think about it but it hasn't dominated my thoughts to the same extent. After a year of living in this state, I am more preoccupied with the monotony of everything and forfeiting so much. Four years ago I had conditioned myself to the fact that I wouldn't be around in 4 years time and this in hindsight was overly pessimistic. More recently my worry is enduring another few years like this, as if that is the worst case scenario. There are certainly times when dying seems a preferable option but on balance I would normally go with Ewan McGregor's advice and "choose life". So when the more likely scenario dawns on me again, it hits that much harder.
Wednesday, 5 October 2011
Leaving Comments Should Now Be More Reliable
I know some of you have difficulty leaving comments on the blog, so I am trying the popup window option which is meant to be more reliable. As before you can use the anonymous option to save you signing in and just put your name in the comment (or not!)
Even if your comments don't appear on the blog, I still get them in an email
So if you have been put off leaving comments before, try again now
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Even if your comments don't appear on the blog, I still get them in an email
So if you have been put off leaving comments before, try again now
.
Tuesday, 4 October 2011
Controlling Bed with Eyegaze Control
My latest adaptation to solve the problem of operating my bed is now working. My bed has powered adjustment for elevating head, knees or the entire bed. Although I only need to raise the back support currently for more comfortable TV viewing, eventually I will need it to make breathing easier. Until now I have relied on the standard handset controls hung on the bedrail which I operate with my nose. But recently I have begun to struggle with this method so lowering the backrest after finishing watching TV is now very difficult and on a couple of occasions has nearly been impossible. But more significantly, if I wake feeling short of breath I can't raise myself up.
The only solution was eyegaze control and the first option was to use the infrared remote control on my computer. This would require the bed to be fitted with an infrared receiver either from the manufacturer or one made by myself and Chris. When I enquired with the supplier, I was told it was available but never been supplied in the UK before and was £200. However I knew that this was going to be the easiest option, so it was ordered. Unfortunately the first unit was faulty but a week later the replacement arrived, so it was on to the tricky bit of programming the eyegaze. I say tricky only because of the logistics involved. As great as my eyegaze software is, a significant weakness is the inability to use eyegaze control to modify it so frustratingly I need to rely on the software company to make changes remotely, now I can no longer use a mouse! But this time I also required someone here to push the bed's remote control buttons at the right moments so my software could learn the infrared codes. It was relatively straight forward in the end and after a couple of sessions we had it sorted.
The video shows the setup working. Each button press triggers only a small movement. At the start of the video watch the backrest move each time I 'click' the screen button by looking at it. Its not ideal but it's better than too big a movement which could potentially move me out of eyegaze range and stranded.
The only solution was eyegaze control and the first option was to use the infrared remote control on my computer. This would require the bed to be fitted with an infrared receiver either from the manufacturer or one made by myself and Chris. When I enquired with the supplier, I was told it was available but never been supplied in the UK before and was £200. However I knew that this was going to be the easiest option, so it was ordered. Unfortunately the first unit was faulty but a week later the replacement arrived, so it was on to the tricky bit of programming the eyegaze. I say tricky only because of the logistics involved. As great as my eyegaze software is, a significant weakness is the inability to use eyegaze control to modify it so frustratingly I need to rely on the software company to make changes remotely, now I can no longer use a mouse! But this time I also required someone here to push the bed's remote control buttons at the right moments so my software could learn the infrared codes. It was relatively straight forward in the end and after a couple of sessions we had it sorted.
The video shows the setup working. Each button press triggers only a small movement. At the start of the video watch the backrest move each time I 'click' the screen button by looking at it. Its not ideal but it's better than too big a movement which could potentially move me out of eyegaze range and stranded.
Sunday, 2 October 2011
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