Having just noticed that the January blog entry count is looking rather light, I thought I'd resort to the TV broadcaster's approach and put out a repeat! Most of you have probably seen this, but for those who haven't, have a look at http://www.steveevans.co.uk/
I'll have some more original musings soon
Saturday 30 January 2010
Thursday 21 January 2010
Life Could Be Worse
I saw something on the news last night that made me appreciate life could be worse and will try to remember it next time I'm feeling hard done by.
News of disasters like the one in Haiti, despite their horror often feel so far removed from our lives, that by the end of the weather forecast its forgotten. But 10 seconds of last nights report put things into perspective.
Parents of two children were unable to recover their bodies from the ruins of their house, so they had to pour petrol over them before setting them alight in order to cremate them.
How absolutely horrific
Just imagine having to do that.
I did and for the first time in 2 years felt lucky to be in my position.
News of disasters like the one in Haiti, despite their horror often feel so far removed from our lives, that by the end of the weather forecast its forgotten. But 10 seconds of last nights report put things into perspective.
Parents of two children were unable to recover their bodies from the ruins of their house, so they had to pour petrol over them before setting them alight in order to cremate them.
How absolutely horrific
Just imagine having to do that.
I did and for the first time in 2 years felt lucky to be in my position.
Tuesday 19 January 2010
Monday 18 January 2010
Beware . . . . whinge ahead
it seems since Christmas that everything has got harder. I don't think that the progression has accelerated, more of a " straw " and " camel's back " situation. It is is difficult adjusting to any change but some have greater implications than others.
I think initially I go through a mourning period during which time I get depressed about losing the ability to do another task without assistance, but after a week or so you've worked out a new routine to accommodate the change. However the recent progression has taken me perilously close to not being able to do some significant things. As a result not only am I feeling gloomy about the loss of these abilities, but getting even more depressed by the stress involved with working out how to cope with the changes. And with one of the issues being my almost entirely failed speech ( a massive issue in its own right ) trying to communicate any thoughts about these changes is very difficult and it turns into a vicious cycle which can be truly overwhelming and I just feel very isolated trying to deal with it by myself in my head.
Apart from my speech, my stability is so poor that transferring is a pretty scary experience with a real risk of falling. This also makes the prospect of doing a transfer really stressful. The answer is to use a hoist but apart from the psychological barrier I have to overcome, which I have, it introduces other issues such as the need to have 2 carers present. I know its all do-able but its just the relentless addition of extra equipment, extra hassle, extra time and decreased independence, that sometimes is too much to bear.
The final new problem is that I discovered today, having finally been able to get out on my outdoor wheelchair, that my arms have weakened to the point where I can barely lift them on to the armrest to operate the joystick. I know it will possibly be only a few more weeks until it will be impossible; what do I do then. The arm weakness has also claimed my ability to feed myself. I've been struggling for the last 2 months but its just too difficult. So I've rented a device which will feed me. I used it reasonably successfully yesterday but tonight the pasta ended up all over the floor.
Ok, this is turning into a bit of a whinge so I'm going to stop. I'm just finding the inability to find solutions to the never ending hurdles too much at the moment.
I think initially I go through a mourning period during which time I get depressed about losing the ability to do another task without assistance, but after a week or so you've worked out a new routine to accommodate the change. However the recent progression has taken me perilously close to not being able to do some significant things. As a result not only am I feeling gloomy about the loss of these abilities, but getting even more depressed by the stress involved with working out how to cope with the changes. And with one of the issues being my almost entirely failed speech ( a massive issue in its own right ) trying to communicate any thoughts about these changes is very difficult and it turns into a vicious cycle which can be truly overwhelming and I just feel very isolated trying to deal with it by myself in my head.
Apart from my speech, my stability is so poor that transferring is a pretty scary experience with a real risk of falling. This also makes the prospect of doing a transfer really stressful. The answer is to use a hoist but apart from the psychological barrier I have to overcome, which I have, it introduces other issues such as the need to have 2 carers present. I know its all do-able but its just the relentless addition of extra equipment, extra hassle, extra time and decreased independence, that sometimes is too much to bear.
The final new problem is that I discovered today, having finally been able to get out on my outdoor wheelchair, that my arms have weakened to the point where I can barely lift them on to the armrest to operate the joystick. I know it will possibly be only a few more weeks until it will be impossible; what do I do then. The arm weakness has also claimed my ability to feed myself. I've been struggling for the last 2 months but its just too difficult. So I've rented a device which will feed me. I used it reasonably successfully yesterday but tonight the pasta ended up all over the floor.
Ok, this is turning into a bit of a whinge so I'm going to stop. I'm just finding the inability to find solutions to the never ending hurdles too much at the moment.
Friday 15 January 2010
More Gadgets
I recently took delivery of my eyegaze system which allows me to control a computer with my eyes. The system includes software which makes typing documents, email and texts easier.
Anything typed can be read aloud so it will become my primary communications method once my voice finally goes, which won't be long. The system theoretically will allow me to anything in Windows but in practice most things require too fine mouse control to be controlled with eye movements so the days of video editing are numbered I fear. But I will be able to keep the blog updated albeit with mainly textual content.
The main restriction of the system is that it is not mounted on the wheelchair yet so I can only hold conversations in my office where the computer is mounted on the desk. Hopefully get it mobile in a couple of weeks. The other thing it does is environmental control, so anything with infrared control could be operated from this, so I haven't got to struggle with TV remotes.
The whole system uses " grids " as shown in the picture and they are user definable, so I've been spending a lot of time designing grids to suit me while I can still use a mouse! While this is all very clever, like everything else MND associated it only comes at a price and in this case its in the same league as a family car. But like wheelchair, I think its a price worth paying for being able to communicate.
Of course using a computer to speak in a social situation has some limitations as I discovered last weekend. one of the problems, is that you are always contributing to the subject everybody else was talking about 3 minutes earlier. The other thing is that by the time you've typed something somebody else has already said it.
Of course I can use pre-prepared sentences so I have a few prepared for specific situations. One of them is " I think you're talking bollocks because.... "; the recipient will just have to wait another 5 minutes to find out why "!
Anything typed can be read aloud so it will become my primary communications method once my voice finally goes, which won't be long. The system theoretically will allow me to anything in Windows but in practice most things require too fine mouse control to be controlled with eye movements so the days of video editing are numbered I fear. But I will be able to keep the blog updated albeit with mainly textual content.
The main restriction of the system is that it is not mounted on the wheelchair yet so I can only hold conversations in my office where the computer is mounted on the desk. Hopefully get it mobile in a couple of weeks. The other thing it does is environmental control, so anything with infrared control could be operated from this, so I haven't got to struggle with TV remotes.
The whole system uses " grids " as shown in the picture and they are user definable, so I've been spending a lot of time designing grids to suit me while I can still use a mouse! While this is all very clever, like everything else MND associated it only comes at a price and in this case its in the same league as a family car. But like wheelchair, I think its a price worth paying for being able to communicate.
Of course using a computer to speak in a social situation has some limitations as I discovered last weekend. one of the problems, is that you are always contributing to the subject everybody else was talking about 3 minutes earlier. The other thing is that by the time you've typed something somebody else has already said it.
Of course I can use pre-prepared sentences so I have a few prepared for specific situations. One of them is " I think you're talking bollocks because.... "; the recipient will just have to wait another 5 minutes to find out why "!
Saturday 9 January 2010
Friday 8 January 2010
New Things
On the left there is now a link to my photo album. Also a link to a website I use to keep track of my progress and keep in touch with other MND patients. The little stick man tells you how much each area is affected (the last green section disappeared recently )
Thursday 7 January 2010
Back to that subject of Gratitude
Before I became known as Steve, the guy with MND I was known as Steve, the guy with triplets which was infinitely preferable.
The only times the "triplet" reference irritated me was when I was introduced to someone in this way and the response was "that must be hard work for your wife " inferring that I, maybe as they had done, had taken the option of leaving early for work and conveniently getting home just as they were in bed. I'm not saying the temptation wasn't there occasionally but it simply wasn't an option. So breakfast and bathtime was usually my time with the boys giving me time to get to know them and giving tracy regular, albeit brief breaks from the relentless and in the beginning quiet tedious business of looking after 3 babies.
Everyone tells you that you shouldn't wish these early years away as they'll grow so quickly. But having changed over 3000 nappies (the washable variety ) in the first year and made up nearly 3500 bottles of formula in 6 six months, you can't help looking forward to the days when you'll be playing football in the park, going for bike rides in the country and having snowball fights on days like today. So I feel angry and cheated that I was given so little time to enjoy any of this. OK, so I can watch them from indoors in my wheelchair playing in the snow with Tracy, but it is hardly the same.
Helping out during the early years may well be commendable, but I don't expect Jake, Luke or Daniel to appreciate or be grateful for that. When we first had the boys we went to see Stephen Biddulph, author of " Raising Boys " giving a talk about that very subject. I always remember him saying how a dad's role really comes into play when boys reach the age of seven. Little did I know then about the difficulties I would face attempting to fulfil this role.
There is no escaping the fact that since the earlier part of 2009, my role as a dad has been diminished to the point of almost non-existance. Particularly with my speech now pretty much unintelligable, my ability to interact with them is all but gone. A 9 year old is not interested in waiting while I slowly spell out a sentence on this machine, particularly if they suspect the finished sentence will read "Time for bed "!
On the subject of discipline, I know most parents will say jokingly how little control they have over their children but when you really don't have any, frustration levels go through the roof. In fairness the boys don't take advantage to the extent that they could, but the inability to intervene physically or verbally with any effect leads to me ranting unintelligably and getting unreasonably angry. I then get angrier still with myself for having so little tollerance; a quality I used to have in abundance pre MND and one which I hoped the boys would inherit.
The one thing that I hope I can give them now and in the future is a level of financial security. At the moment it is enabling us to give them memorable holidays and activities like horse riding. So maybe there is one lesson in life I have taught them...... get decent health and life insurance!
I know I should look at the positive aspect of all this which is that my gradual withdrawal from their lives will make our ultimate parting that much easier for them to deal with. But the selfish part of me wants them to miss me but I fear they won't. And maybe its that possibility which I resent the most.
The only times the "triplet" reference irritated me was when I was introduced to someone in this way and the response was "that must be hard work for your wife " inferring that I, maybe as they had done, had taken the option of leaving early for work and conveniently getting home just as they were in bed. I'm not saying the temptation wasn't there occasionally but it simply wasn't an option. So breakfast and bathtime was usually my time with the boys giving me time to get to know them and giving tracy regular, albeit brief breaks from the relentless and in the beginning quiet tedious business of looking after 3 babies.
Everyone tells you that you shouldn't wish these early years away as they'll grow so quickly. But having changed over 3000 nappies (the washable variety ) in the first year and made up nearly 3500 bottles of formula in 6 six months, you can't help looking forward to the days when you'll be playing football in the park, going for bike rides in the country and having snowball fights on days like today. So I feel angry and cheated that I was given so little time to enjoy any of this. OK, so I can watch them from indoors in my wheelchair playing in the snow with Tracy, but it is hardly the same.
Helping out during the early years may well be commendable, but I don't expect Jake, Luke or Daniel to appreciate or be grateful for that. When we first had the boys we went to see Stephen Biddulph, author of " Raising Boys " giving a talk about that very subject. I always remember him saying how a dad's role really comes into play when boys reach the age of seven. Little did I know then about the difficulties I would face attempting to fulfil this role.
There is no escaping the fact that since the earlier part of 2009, my role as a dad has been diminished to the point of almost non-existance. Particularly with my speech now pretty much unintelligable, my ability to interact with them is all but gone. A 9 year old is not interested in waiting while I slowly spell out a sentence on this machine, particularly if they suspect the finished sentence will read "Time for bed "!
On the subject of discipline, I know most parents will say jokingly how little control they have over their children but when you really don't have any, frustration levels go through the roof. In fairness the boys don't take advantage to the extent that they could, but the inability to intervene physically or verbally with any effect leads to me ranting unintelligably and getting unreasonably angry. I then get angrier still with myself for having so little tollerance; a quality I used to have in abundance pre MND and one which I hoped the boys would inherit.
The one thing that I hope I can give them now and in the future is a level of financial security. At the moment it is enabling us to give them memorable holidays and activities like horse riding. So maybe there is one lesson in life I have taught them...... get decent health and life insurance!
I know I should look at the positive aspect of all this which is that my gradual withdrawal from their lives will make our ultimate parting that much easier for them to deal with. But the selfish part of me wants them to miss me but I fear they won't. And maybe its that possibility which I resent the most.
Saturday 2 January 2010
Our Christmas
With the first day of the school term mercifully in sight its a good time to report on our Christmas 2009 experience. Festivities started early this year with Tracys family coming over on the 12th because they would be in Australia for Christmas and New year for her brother David 's wedding to Becky. I know Tracy would have loved to have gone as would have I , but we knew that the logistics of doing the trip would be very difficult so we had to decide several months ago that we would have to settle for congratulating them at their UK party in the New Year . One of the advantages of doing Christmas in stages is that the present overload syndrome is minimised. We took he boys to see Santa at the grotto at Painshill Park on Christmas Eve and were greeted by the first Santa Ive met with a strong Saarf London accent. I doubt that even the most devout believers were convinced; needless to say the boys weren't, with the video footage clearly picking up Jakes comment "he's sooo fake" ringing throughout the grottos caverns.
Christmas Day kicked of at 7.00 sharp , although the boys would have started several hours earlier given the chance and we got little sleep as a result . Once the first wave of mayhem had subsided Tracy escaped to walk the dogs while I got up.Round two started later in the morning with the bigger presents from us . . . . . well you don't want santa to get too much credit , with round 3 commencing in the afternoon once my family had arrived , although only after we had forced the boys to partake in a Christmas day dog walk . Luke insisted on wearing his newly aquired santa suit . Back home to dispatch the final round of unwrapping before the well earned lunch. Afterwards , David, Sue and the girls were put in charge of toy assembly and setup including the Guitar Hero complete band which as you can see from my previous post , kept them well entertained .
The remainder of the holiday has been relatively quiet apart from three 9 year old boys bouncing off the walls. we met up with friends in London and visited the London Dungeons which everybody enjoyed . Despite our pleas they refused to let us leave the boys there as an exhibit, on the basis that they were too scarey. On New Years Eve we all went to see Treasure Island at The Rose Theatre in Kingston , bucking the trend of the traditional panto. It was an enjoyable production although the wordy narrative , while probably faithful to the book , made it less accessible to the younger audience . we didn't venture out anywhere in the evening but we let the boys stay up until midnight to watch the fireworks on TV.
Friday 1 January 2010
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