Wednesday, 22 February 2012

IT support required

I don't want to turn this blog into a technical support forum but I would appreciate people forwarding a link to this post to anyone with good IT knowledge because this has me stumped.

I have a Netgear 632 router but it intermittantly either locks up or drops internet connection and requires physically turning off and on. So I bought a Netgear 834 router, configured it identically and connected it. Everything worked fine initially, then I noticed one computer had frozen. After much troubleshooting I confirmed the following. The computer only locked after login, between 30 seconds and a couple of minutes after. Its totally frozen with the clock stopped. Switch back to the 632 and no locking up. Next I tried a Cisco x2000 router and exactly the same problem. As the Cisco had wireless I disconnected the network cable and connected wirelessly. Same problem! I have several XP computers on the network and they are all fine. All routers are configured identically as DHCP servers. The computer in question is running service pack 3 and works perfectly when the Netgear 632 is used. Could it be a tcpip driver or stack issue; do all network connections, wired and wireless share the same driver? Why would it work with one router but not others? At least the fact that wireless networking is also affected rules out any physical causes such as cables, switches etc.

So, any ideas?


Boys' Birthday

The boys had their 11th birthday on Monday. They were a bit put out because it's the first year it's landed in school term time instead of the half term. Luke in his inimitable manner has researched the calendar until 2017 to confirm it doesn't happen again; it doesn't!

They didn't have a party but instead are having sleepovers. They are spread over 3 weeks and the two boys not involved will stay at aunty sue's and grandma's to protect our sanity. Luke has already had his and confirmed what a misnomer the term 'sleepover' is! Unbeknown to us he told his friends that if they wanted to bring presents just to bring cash and now has an envelope with fifty quid in it. That's m'boy.

Tracy's family came over on Sunday and the boys got their eagerly anticipated stunt scooters. They also got some ramps to use with them. Finally they got Nerf Stampede guns which, as anyone with boys of a similar age will know, is the king of foam dart guns. We now have 180 darts distributed around the house. Judging by the quantity lost in inaccessible places after the first day, I reckon I will avoid having to buy the eighteen replacement D-size batteries!

On Monday my family came over for the second round of presents. Their cousin Alisha had made an absolutely brilliant Monopoly cake (the boys favourite game at the moment). It seemed a shame to cut it.

Regarding my computer virus, I think this afternoon I finally cracked it. I had a root kit virus, a dns virus, a svchost virus and a couple of trojans. fortunately it was only internet affected so I have also spent the last 2 days remotely configuring and updating my spare tablet which I was going to swap this with allowing me to fix this remotely and not while it was my primary eyegaze system. My last blog explained the risk involved. Anyway hopefully I won't need to swap it now but its good to have the spare system upto date. Thank christ for dameware remote control software it's the DBs. I reckon it might be a world first, remotely controlling a secondary eyegaze system using eyegaze control on another computer! My eyes are knackered!


Saturday, 18 February 2012


Today I have felt not just low but quite scared. It was triggered by my eyegaze system getting a virus. It's a nasty one that redirects website searches to bogus sites and prevents access to antivirus websites or the installation of any antivirus software. I have successfully removed similar viruses on other computers using eyegaze remote control but attempting it on the eyegaze system itself is highly risky because the process of attempting the virus removal could knock out the eyegaze control, rendering the system unusable and leaving me locked in with no method of communication or environmental control. Despite this I started running some utilities to identity and remove the virus. Initially everything went smoothly, then a reboot was required and the eyegaze didn't restart.

A feeling of panic washed over me, that cold wave that you feel when the policeman holding a speed gun steps out in the road and flags you down. After some thought and managing to get my carer to connect a mouse, she managed to interpret my grunts, clicked on a few things and eyegaze functionality was recovered. The feeling of relief was immense, the feeling you get when you realise the policeman is pointing at the car behind you! But my euphoria was short lived when I put what had just happened into perspective. Yes, the demise of my eyegaze system is somewhat more catastrophic than a similar fate befalling your average PC, but worse things can happen. Being done for speeding isn't really that serious if you're about to drive over a cliff.

Having had over a year of progression stability I have allowed myself to succumb to a state of denial. Writing about ventilation and end of life issues is one thing, accepting that they ARE going to happen is very different and I am not sure I have yet. And if I felt panicked about the computer, how will I cope when the cliff edge comes into view.

Thursday, 9 February 2012

one of those days, again

I am having one of those days which makes the big decision mentioned in the previous post much easier. I am being forced by the care agency to abandon the standing hoist and have 2 carers and a full hoist. This isn't just inconvenient it fucks everthing up because there can no longer be any flexibility on when I get up, go to bed or when I use the toilet, everything will have to timed to when the second carer is here. My remaining leg strength will deteriorate rapidly without the excercise of the standing hoist. It is entirely unnecessary but if they insist on it, I have no choice.

I have had a crappy cold and although it's getting better I am still snotty. I am frequently choking on saliva and the subsequent coughing results in a torrent of snot from my nose, saliva running down my chin and neck and me sliding down in the wheelchair to an uncomfortable slumped position. This invariably occurs 5 minutes after the carer has left. During the coughing I usually bite my tongue and inside of cheek causing them to swell, ensuring that I continue biting them for the rest of the day.

Then there are computer issues. The boys computer is overheating and its power supply is tripping from being overloaded. The other computer has suddenly stopped recognising firewire devices so we can't capture video footage for editing. Apparently it's a common XP problem but nobody has a solution. These problems are beyond eyegaze controlable remedies and the guy who I occasionally get in is permanently tied up at work.

I feel like throwing in the towel, everything is so f***ing difficult


Thursday, 2 February 2012

Decisions, decisions

Yesterday I had an appointment at the Royal Brompton Hospital which I had been getting stressed about. Not because of the appointment itself but because of the journey and uncertainty about parking etc. More on this later but the journey helped me make the first of two big decisions.

On Monday I tried a new car. It has the advantage of having it's wheelchair space in the front which would potentially be much more comfortable. I was hoping for either no improvement or the ride quality of a Bentley, making the decision on spending £25k easy either way. Of course it was neither but the improvement was significant and despite knowing the VW will only fetch £15k, I have ordered it. There was added pressure because if we wanted to avoid the 4 month delivery time we had to secure one of only two suitably spec'd cars in UK stock. The conversion still takes 4 weeks so I will hopefully have it mid March. The boys are mortified by the thought of being seen in a Fiat Doblo and I can't say I blame them. Five years ago I was looking forward to taking them for a spin in a TVR about now.

Okay, back to the hospital appointment. I was going to see a respiratory consultant with experience of tracheotomy procedure and ongoing care

I wanted to get more information on tracheotomy so I can make an informed choice when the time comes. I understood it can involve a lengthy hospital stay but I had heard anything between several days to a couple of months. Then 24 hour care is required at home. This is obviously the biggest consideration as this would require a full time carer. But my limited experience of NIV suggests I will need similar care arrangements as I unable to adjust the mask and if I start choking on saliva, I will need assistance. So I don't know if the care issue will be any different. I will try my NIV in a couple of weeks time once my physio has been trained to adjust the settings under guidance but I find it difficult to envisage using it overnight unattended. So it might not be a question of whether to have a tracheotomy but whether to have any ventilation assistance. With my FVC already below 40 it's a choice I might need to make quite soon. It's actually been fairly stable for 18 months after a steady decline during 2009 and 2010 but I have known of people where respiritory function worsened considerably without warning.

The consultant agreed with most of my points and reiterated the cost and carer requirements involved in 24 hour care. He likened it to flying an airliner; most of the time there isn't much to do but when something goes wrong, you need someone who knows what to do! I think it was a useful meeting but it hasn't made the decision any easier. The journey back got off to a bad start. As I drove the wheelchair into the car, it turned itself off and wouldn't turn back on. To make it worse, I was only half way in and in a position where the top of the boot opening prevented me lifting my head to operate the eyegaze and communicate with Tracy. I needed to explain how to switch the chair into manual mode so she could push it. A total catch 22 situation. Tracy had to hold my head as high as it could go and fortunately my eyes were just picked up by the camera and I could just about manage to type a few words explaining where the levers were. Tracy managed to push the heavy chair into the car. The journey back was horrible. With no power on the wheelchair I couldn't tilt it back so the slightest movement sent my head flopping forward and I spent most of the 45 minute journey home with my chin on my chest and my neck strained.

So my hospital visit helped me make the decision on the car but I still have a much bigger decision, the ultimate decision, to make. And if the non-invasive ventilation proves difficult without full-time care it is a decision I will need to make that much sooner. I really don't know what I should do. It's easy some days to think "OK I have had enough and if there was a button marked 'EXIT' I'd push it" but faced would I? Living with ventilation may not initially reduce my quality of life much further than it is already. But it is likely to impact other people more. The intrusiveness of full-time carers, the management of multiple carers when I can no longer do it. Does the benefit to me and my family of being on ventilation outweigh the burden. Non-invasive ventilation could extend life by 1 or 2 years and a tracheotomy considerably longer, at least theoretically. But is it fair to put everyone else's life on hold for the duration. This illness has already deprived the boys of a normal childhood. I know they haven't wanted for anything materialistically and maybe they have learned some things as a result of the situation, but on balance they have lost significantly more than they've gained. Is it fair to continue to subject them to this situation throughout their teens. What price will they pay just for me to see them grow up. If I choose not to vent then they will have to deal with bereavment sooner but they can move on afterwards. Is that going to be better for them and Tracy for whom all of this equally applies.

When the time comes to decide, will I be able to take others need into account anyway or will the self preservation instinct overwhelm every other consideration. Is it fair anyway to base the decision on others needs or at least doing it with their knowledge, or does it just burden them with guilt. Although I have focused in this blog on the impact of others, it's not an attempt to appear noble or selfless. It's because these are the only consequences that are fairly certain. I don't think I will know what I want from a selfish point of view until it happens and as I have already said, this might result in a decision that is far from being either noble or brave.
It's not a subject one can canvas opinion on. It's a decision only I can make and it makes the decision about buying a new car pale into insignificance.