I am not looking forward to the colder months ahead. Getting out has already become more difficult. Firstly the process of transferring between indoor and outside wheelchair is more involved with the need to transfer feeding system between the two. It doesn't take that long, but its another thing and if the carer isn't here it has to be fitted in with everything else that is going on. Then there is the increasing physical limitations. I am no longer able to bomb around at a breakneck 7.5 MPH because I can't push the joystick forward far enough and because the bumping around causes me to slip out of the seat. The cold weather makes this worse as it causes my legs and core to go rigid and I end up almost lying down.
But the biggest deterrent is the fear of the dreaded puncture. I have to admit that going out by myself is at best, foolish and at worst, completely irresponsible. I don't take my eyegaze system out usually because it is difficult to see where I am going with it on and it wouldn't survive a shower of rain. So if I have any problems I have no way of communicating. I have stuck a card on the armrest pointing people to a larger sheet kept in the bag on which I have printed my 'instruction manual'. It includes various contact numbers including a wheelchair recovery service and details about changing wheels amongst other information. However, it relies not only on whoever is helping having some common sense to decide the best course of action but also them being able to give up at least an hour of their time. And knowing this means I constantly worry about the need for assistance and feel guilty that someone is going to have their day considerably inconvenienced if I do.
When I do go out I spend most of the time carefully scouring the ground in front of me for potential puncture inducing debris. Items on this list are numerous and include screws, nails, broken glass, thorny brambles, drawing pins, various metal items which have fallen off bikes and cars. Once spotted, I try and commit the location to memory for the return trip. It is probably verging on paranoia, but the fear of being stranded without being able to communicate is now significant and is either deterring me from going out or spoils the experience when I do.
I have until now forced myself to get out at least once a week just to know that I can still manage it. If a longer period elapses between outings I fear that just a small step change in my strength or range of movement will prevent me from using the outdoor wheelchair . I have already lost the ability to turn right, so I have to spin anticlockwise 270 degrees instead which confuses everyone, and the next person who says "ooooh, showoff" might regret it! I am hoping to get the controller modified to make right hand movement more sensitive, but it might not help. So with the winter months approaching this maybe the last time I will be able to get out by myself. And that fact is hard to deal with.
Thursday, 28 October 2010
Monday, 25 October 2010
Diggerland
Yesterday we took the boys to Diggerland. We have been recommended it by a few people and it didn't disappoint. As the name suggests it is a theme park based on diggers. I am not talking about the miniature diggers you stick a quid into and move some play sand around, but full size 6 tonne JCBs.
The 'rides' include static JCBs that the kids can dig enormous holes with, JCB trucks they can drive around a muddy quagmire, a ride involving sitting in a giant digger bucket on a giant JCB and being swung round at high speed, 10 metres up in the air, and the boys favourite, driving a Nissan 4x4 offroad.
A number of factors made Diggerland a refreshing change from other theme parks. It isn't too big, most rides are available to kids over 5 and can be ridden without adult supervision. I suspect that being late October helped, but the best thing was having no queues beyond a few minutes for anything. Despite not arriving until 12-30 the boys did everything at least once and we left by 4! So unlike Legoland we haven't needed 48 hours to recover. OK, legoland is on an entirely different scale, but I think the boys possibly enjoyed Diggerland more.
We took the video of Luke in one of the smaller diggers because his facial expressions as he concentrated were priceless, although the iphone quality makes it difficult to see. I don't find Mr Bean very funny, but Luke pulling the same facial contortions completely naturally is hysterically funny.
The 'rides' include static JCBs that the kids can dig enormous holes with, JCB trucks they can drive around a muddy quagmire, a ride involving sitting in a giant digger bucket on a giant JCB and being swung round at high speed, 10 metres up in the air, and the boys favourite, driving a Nissan 4x4 offroad.
A number of factors made Diggerland a refreshing change from other theme parks. It isn't too big, most rides are available to kids over 5 and can be ridden without adult supervision. I suspect that being late October helped, but the best thing was having no queues beyond a few minutes for anything. Despite not arriving until 12-30 the boys did everything at least once and we left by 4! So unlike Legoland we haven't needed 48 hours to recover. OK, legoland is on an entirely different scale, but I think the boys possibly enjoyed Diggerland more.
We took the video of Luke in one of the smaller diggers because his facial expressions as he concentrated were priceless, although the iphone quality makes it difficult to see. I don't find Mr Bean very funny, but Luke pulling the same facial contortions completely naturally is hysterically funny.
Thursday, 21 October 2010
Offline
Last Sunday some ??!?!?? !?!??! stole the communication cabling out of the road nearby. It happened before about a year ago and like last time it will take 4 days to replace it. So for the sake of a couple of hundred pounds worth of copper, several hundred homes and businesses have been severely inconvenienced. Services such as alarm monitoring services and personal care alarms have been rendered useless. Obviously they will never catch the thieves but even if they did, what would the punishment be; few hundred quid fine, a bit of community service.
From a personal perspective, it is particularly infuriating as internet access is my main method of communication and as importantly a means of keeping occupied, without which I am left watching TV or sitting in the garden watching the water level in our new pond, descend (more on that another time ). The other activity still possible is blog writing, although nothing can obviously be published yet.
So the situation has coerced me into shuffling my backside and writing something. So this might be the first of a deluge of entries or not depending on how addictive Cash In The Attic proves to be. Until now, and despite subscribing to almost every Sky channel, I have avoided watching TV all day long. I admit to watching Heir Hunters (terrible) and Homes Under the Hammer as it simply is preferable to listening to the electric toothbrush, shaver or the silence of my rather uncommunicative carer while she operates them. But I try and avoid watching TV after 11. I have countless DVD box sets to watch but decided a couple of years back to save them until there is nothing else I can do. And that time hasn't arrived quite yet.
Weather permitting I would rather sit in the garden or better still, go out. I don't put the computer on the outdoor wheelchair but when the broadband is working, if I decide to sit in the garden I can keep busy with all the stuff most people do in their office while they should be working.
But for the next four days its Daytime TV or this
I have decided that once we are reconnected I am going to research the extent of this type of theft and start a campaign to get telecom companies to put better protection in place.
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From a personal perspective, it is particularly infuriating as internet access is my main method of communication and as importantly a means of keeping occupied, without which I am left watching TV or sitting in the garden watching the water level in our new pond, descend (more on that another time ). The other activity still possible is blog writing, although nothing can obviously be published yet.
So the situation has coerced me into shuffling my backside and writing something. So this might be the first of a deluge of entries or not depending on how addictive Cash In The Attic proves to be. Until now, and despite subscribing to almost every Sky channel, I have avoided watching TV all day long. I admit to watching Heir Hunters (terrible) and Homes Under the Hammer as it simply is preferable to listening to the electric toothbrush, shaver or the silence of my rather uncommunicative carer while she operates them. But I try and avoid watching TV after 11. I have countless DVD box sets to watch but decided a couple of years back to save them until there is nothing else I can do. And that time hasn't arrived quite yet.
Weather permitting I would rather sit in the garden or better still, go out. I don't put the computer on the outdoor wheelchair but when the broadband is working, if I decide to sit in the garden I can keep busy with all the stuff most people do in their office while they should be working.
But for the next four days its Daytime TV or this
I have decided that once we are reconnected I am going to research the extent of this type of theft and start a campaign to get telecom companies to put better protection in place.
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Thursday, 14 October 2010
I am...
very aware that a blog update is long overdue and this entry doesn't go very far to redress that. Finding it difficult to muster sufficient enthusiasm to write much at the moment despite having copious amounts of time to do so. Hopefully have something soon
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Tuesday, 28 September 2010
"I can't imagine what it is like..... "
There are times when I wish other people could "experience" MND for a day. It isn't out of any sadistic tendencies but just to give people an insight of what's involved. I appreciate that many of the illness' effects are blatently apparent but there are so many sub-issues too numerous to list that would become apparent if you lived MND for a day or two.
I have sometimes, during the many thinking hours available to me, considered ways to recreate an MND environment for someone. Unfortunately most are impractical or wouldn't really mimic the real thing. For example, wearing a hat weighing 10kg to cause your head to flop around under any lateral forces. Tieing 15 kg weights to your forearm to create the necessary difficulty when trying to scratch your nose. Obviously plonking oneself in a wheelchair would emulate much of what I have to contend with, as long as you weren't tempted to nip out occasionally Little Britain style, but most people don't have wheelchairs to hand so again this isn't going to work.
Stuffing scrunched up paper in your mouth would probably give you a similar challenge in terms of communication skills but you could probably only tolerate that for a few minutes. So my MND Experience Kit has not got very far and certainly isn't ready to go on Dragon's Den yet.
However, not being one to give up on something, I thought of a way for somebody to experience one and probably the singularly most infuriating facet of this disease, but it will only work for those of you with young children.
Apart from not being able to participate physically with the boys, having severly limited communication with them has become one of the worst aspects of having MND. Obviously in terms of their day to day care, Tracy has to do the vast majority of it. But there are still occasions when Tracy isn't around and I need to intervene in something they should be doing, but aren't, or vice versa. Also, as I have discussed in previous posts, you don't normally have more than an hour passing without some argument erupting. But more importantly than these negative communications, it is the inability to interject in other conversations with them. If I know they are returning from an activity I can prepare some comments about whether they enjoyed it etc. But I can't respond to their answer because they will be kicking a football in the garden by the time I am typing my second word.
All those little snippets of information during the day that kids pick up through afirmation or correction of what they say is largely absent. Jake in particular, through the course of a day can authoritively announce 100 "facts", the vast majority of which he makes up. The other day when we were in the car Jake authoritively announced that Ferrari and Lamborghini were in fact the same car made by the same company but just had different badges. Now I know that it wouldn't be the end of the world if he goes through life not knowing that Ferrari are owned by Fiat and that Audi own Lamborghini, but any self respecting bloke should do and it is my job to ensure he does!
Now obviously I could try and remember all the things I want to say, type them all out later before sitting them down for a daily lecture but by then I will instead be frantically spelling out "guinea pigs can't swim" as they dangle them over the pond.
So to go back to the original point of this post and for the benefit of the many people who have said that they can't imagine what it is like, here is something you can try that will give you some insight.
When your children are around try this. Designate a two hour period where you only communicate by writing notes to them. You must write in capital letters to achieve a similar writing speed. You can nod or shake your head for yes and no responses, but no pointing at things for assistance and no reverting to speaking when things get a little chaotic. Obviously no physical intervention and for maximum effect try it around bathtime or mealtime. I don't really expect anyone to try this but if you do let me know how you get on!
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I have sometimes, during the many thinking hours available to me, considered ways to recreate an MND environment for someone. Unfortunately most are impractical or wouldn't really mimic the real thing. For example, wearing a hat weighing 10kg to cause your head to flop around under any lateral forces. Tieing 15 kg weights to your forearm to create the necessary difficulty when trying to scratch your nose. Obviously plonking oneself in a wheelchair would emulate much of what I have to contend with, as long as you weren't tempted to nip out occasionally Little Britain style, but most people don't have wheelchairs to hand so again this isn't going to work.
Stuffing scrunched up paper in your mouth would probably give you a similar challenge in terms of communication skills but you could probably only tolerate that for a few minutes. So my MND Experience Kit has not got very far and certainly isn't ready to go on Dragon's Den yet.
However, not being one to give up on something, I thought of a way for somebody to experience one and probably the singularly most infuriating facet of this disease, but it will only work for those of you with young children.
Apart from not being able to participate physically with the boys, having severly limited communication with them has become one of the worst aspects of having MND. Obviously in terms of their day to day care, Tracy has to do the vast majority of it. But there are still occasions when Tracy isn't around and I need to intervene in something they should be doing, but aren't, or vice versa. Also, as I have discussed in previous posts, you don't normally have more than an hour passing without some argument erupting. But more importantly than these negative communications, it is the inability to interject in other conversations with them. If I know they are returning from an activity I can prepare some comments about whether they enjoyed it etc. But I can't respond to their answer because they will be kicking a football in the garden by the time I am typing my second word.
All those little snippets of information during the day that kids pick up through afirmation or correction of what they say is largely absent. Jake in particular, through the course of a day can authoritively announce 100 "facts", the vast majority of which he makes up. The other day when we were in the car Jake authoritively announced that Ferrari and Lamborghini were in fact the same car made by the same company but just had different badges. Now I know that it wouldn't be the end of the world if he goes through life not knowing that Ferrari are owned by Fiat and that Audi own Lamborghini, but any self respecting bloke should do and it is my job to ensure he does!
Now obviously I could try and remember all the things I want to say, type them all out later before sitting them down for a daily lecture but by then I will instead be frantically spelling out "guinea pigs can't swim" as they dangle them over the pond.
So to go back to the original point of this post and for the benefit of the many people who have said that they can't imagine what it is like, here is something you can try that will give you some insight.
When your children are around try this. Designate a two hour period where you only communicate by writing notes to them. You must write in capital letters to achieve a similar writing speed. You can nod or shake your head for yes and no responses, but no pointing at things for assistance and no reverting to speaking when things get a little chaotic. Obviously no physical intervention and for maximum effect try it around bathtime or mealtime. I don't really expect anyone to try this but if you do let me know how you get on!
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Monday, 20 September 2010
And another thing
I know many of you who read this blog have donated to Chris' half marathon fund raiser, so I would like to thank you myself for your generosity. I would also like to say thanks again to Chris for doing it and having watched The Great North Run at the weekend, wish him all the best for a sub one hour time!!
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Friday, 17 September 2010
Chris' Run for MNDA
Its less than a month to go until Chris' run for MNDA. If you you would like to sponsor him, please visit
http://www.justgiving.com/20billionmicronrun
He has been training hard for the half marathon and would welcome any donations
Bill Gates, if you read this, how about a dollar a micron; I could be flogging your software again by Christmas. You have always said you would leave your fortune to charity!
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http://www.justgiving.com/20billionmicronrun
He has been training hard for the half marathon and would welcome any donations
Bill Gates, if you read this, how about a dollar a micron; I could be flogging your software again by Christmas. You have always said you would leave your fortune to charity!
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