Wednesday, 23 December 2009
Tuesday, 22 December 2009
This was the gymkhana the boys took part in at their riding school in cobham. Tracy and the boys have been riding since early summer and are now fairly confident. Its one of the few activities they haven't tired of within a month or two so we are keen to keep it going. All of them did well with Luke coming second ( in case you don't get to the end)
Tuesday, 15 December 2009
So I guess I should be grateful, nearing Christmas 2009, that I'm still here. And although significantly more disabled than 12 months ago and with some respiritory weakness I can (on good days) even envisage making it to Christmas 2010. Despite this, gratitude is not in abundance.
I don't wallow in self pity. I won't give up on something until it becomes impossible. But unlike other MND sufferers I've "met" online I find it impossible to count my blessings and be grateful for what I have because it is such a small fraction of what I had before. Its like a Premiership footballer being transferred to a Conference league team and expecting him to be grateful that he makes the team sheet.
I don't normally whinge too much, because there really is no point, but I don't want to be slowly shutting down without people having some idea of what this is like and knowing who I now am.
My world has shrunk. Observation is almost the only aspect of participation. I remain sane by shutting out thoughts of what I can no longer do. This is effective but isolating. Talking to friends about everyday activities reminds me of what I can't do. My contribution to these conversations is limited to what I did in the past with ever fewer current reference points.
There are so many things I miss. Going for drinks or a meal with friends, driving, working (really), playing football and squash, cycling... the list goes on. But what gets to me more is the almost complete inability to do the most routine things without assistance and having to plan these activities to coincide when assistance is available. Eating, drinking, going to the loo, blowing my nose, putting on a coat, going out, coming back, every detail has to be thought about in advance to ensure I don't find myself in a situation needing assistance when none is there. I'm getting much more cautious about going out by myself. Recent attempts to request assistance from a passer-by have resulted in bemused responses and obvious discomfort as they struggle and fail to understand me. The Iphone which now hangs round my neck is rendered useless by cold inanimate fingers and the weight of my jacket sleeves paralising my arms so I do feel pretty vulnerable and would be struggling if I had a problem. I don't know at what point physical limitations or that fear factor will take away the last element of independence, but they haven't yet.
So, back to that lack of gratitude. Well it is largely due to what this disease has robbed me and 3 boys of as a dad..... on which more I'll write shortly.
I promise I will make the next post festive and cheerie!!
Friday, 11 December 2009
Tuesday, 1 December 2009
Here are some of the details
In total, 470 patients with ALS will be included in the trial in 5 different countries (France, Germany, the United Kingdom, Belgium and Spain).
Benefit of the trial
You were invited to participate in this trial because you have been diagnosed with ALS. It is possible that you may benefit from this new drug because presumably (as was demonstrated in animal experiments) it can exert protective and regenerative (restoring) effects on the nerve cells and so contribute to reducing your discomfort and symptoms, and slowing disease progression. In the case of your random assignment to the group of patients receiving placebo-capsules (without active substance) you will not have the potential benefits of this new medication. You may decide to withdraw from this trial at any time, without giving a reason, and without penalty or loss of any rights or benefits to which you are otherwise entitled. In addition, as part of your participation in the trial your health will be closely monitored. Your participation in the study may help patients in the future by giving important information about TRO19622 and the treatment of ALS.
Currently, the only medicine shown to be beneficial in MND is the medicine called riluzole, which you’re already taking. This alters the rate at which MND progresses and in a study of people with MND treated with riluzole or placebo over a period of 18 months, those taking riluzole survived on average 3 months longer than those on placebo.
Saturday, 28 November 2009
Wednesday, 18 November 2009
I had no idea where Kew retail park was but guessed it couldn't be a million miles from Kew Gardens of which I'm a member so hopped on (figuratively speaking as in practice in was a cautious drive up the usual precariously narrow, steep ramp with a ledge at the top which tips the chair back to a point you feel convinced its going to go right over).
Anyway 45 minutes later we arrive and as hoped, found myself quarter of a mile from main gate.
Sunday, 8 November 2009
I was at the hospital yesterday for something non-MND related and had to put up with a doctor who made little effort to understand me and a nurse who although made more of an effort, talked to me as if I was a 2 year old.
People actually stop making an effort to understand what I'm saying because they have already decided it won't be relevant or important. So as well as the frustration of trying to be intelligible, there is the added frustration of having any comment which is understood, effectively disregarded. I try not to be too judgemental as I'm aware that if the roles were reversed I might be guilty of similar behaviour.
Nontheless I'm getting very intollerant to it and short of being rude dont know how to avoid it. Apart from being made to feel irrelevant, I find the patronising tone and gestures irritating. I was trying to point out to the wheelchair technician that he had left out a part when he was reassembling it and he just smiled and told me not to be concerned, everything was OK. He discovered half an hour later that it wasn't!
I was running a £3m company until 2 years ago designing IT solutions so I'm not used to being treated like an idiot and I'm finding it very hard to deal with now that I am.
When your brain is about the only thing that still works properly you don't want it to be ignored
Friday, 6 November 2009
Friday, 30 October 2009
Friday, 23 October 2009
Anyway I have currently got 84 entries on the tree going back to Great, Great, Great Grandparents in 1799.
The process is quite addictive (in an oh god its 2.30am kinda way ) and it takes much patience and perseverance to extract the necessary facts by combining data from multiple sources. Its very easy to get the wrong records or make some information 'fit' for the purpose of convenience. If you don't get corroborating information from at least 2 sources there is a high probability you'll have the wrong person, but it may not become apparent until you've spent hours going down the wrong path.
I became suspicious this had happened when ancestors which had for generations, lived within a few miles of one village in North Wales started living in London's East end. And although it would have been interesting to have had a great great uncle who'd served 5 years in Pentonville, it was probably better to have spotted the error 2 generations later and eventually find that said great, great uncle was a shepherd who lived within a few miles of aforementioned village in North Wales!
Sunday, 18 October 2009
I know that overall I'm still fortunate in that I am still active albeit wheelchair bound. I'm not on a vent yet but each progression still hits hard and although nothing has changed dramatically, in the last couple of weeks there been deterioration in several areas and being almost crippled verbally tonight made me feel isolated and depressed. We have friends over again next week and not really looking forward to it. I don't want to isolate myself socially, I spend too much time by myself as it is, but I'm still finding seeing friends hard as its become yet another activity which only serves to remind me of this bloody illness
Wednesday, 14 October 2009
The planning process was ridiculous and the stress, extra work and cost created for us by planning being initially refused was horrendous.
I have felt compelled to highlight the incompetencies of the planning department by publishing extracts from the initial refusal notice alongside the appeal result notice which illustrates the complete lack of consistency and poor application of common sense by the first planning officer. Bits in black are our architects comments. I know its a bit long winded- if nothing else, read the bold bits!
The neighbouring property on the south side would be most affected by any further addition on this flank.
The proposed extension to our client property is sited to the north of the
adjoining property in question. A simple sunlight travel path would clearly
indicate that the natural light levels to said property would not be greatly
In the case of sunlight there would be little or no reduction because of the orientation of the respective properties
The proposed extension would project sufficiently beyond its extended neighbour to result in the flank wall causing an infringement of the 45°, light angle from the rear extension windows. This proposal fails to comply with design guidance that is intended to ensure all development reasonably respects neighbouring amenity and its depth would result in an unreasonable loss of daylight to the neighbour and overbearing impact when viewed from that property.
The boundary in question has mature planting on the adjoining side in the form of
trees and large shrubs - all of which to remain. It is our belief that the
addition of the proposed extension would have no greater impact on the light
levels that the existing natural screening. We would also confirm that you
stated during our telephone conversation that you could not see the windows of
the adjoining property from our client site due to the above.
At present trees and shrubs along the boundary already restrict daylight to the particular rear
window of No37 with that house’s own extension creating further shade. While
the proposed extension would not pass the recommended 45 degree angle test with
regard to the small corner area of No 37 I consider that its impact on natural light would not be significant and in all likelihood less than the screening of daylight resulting from the present
boundary trees and other vegetation.
The proposed extension would also result in the need for extensive
work to reduce the Pine tree shown within the neighbouring property but
overhanging the applicants land. The extent of the work would most likely lead
to its demise and as such the application has been considered in light of the removal of this tree.
I also note that the proposed extension would require extensive work to reduce the pine tree on the
immediate boundary resulting in trauma placing its future in doubt. However, I share the Council’s view that the tree has no particular amenity value and therefore this does not affect my findings on the main issue.
Reasons For Refusal
The proposal would infringe light and amenity to the ground floor rear elevation windows of the adjoining property due to the excessive depth of projection being proposed within
close proximity to the boundary, as such it fails to take account of advice in the saved policies HSG16, HSG20, ENV1 and ENV2 of the Replacement Elmbridge Borough Local Plan
2000, also Government advice, Planning Policy Statement 1 (Delivering Sustainable Development), Planning Policy Statement 3 (Housing).
Together with existing mature planting on either side of the boundary benefiting its setting and
screening, I do not consider that this modest development would have an overbearing impact on the outlook from the neighbouring property.
In my view the proposed extension would neither harm the character and appearance of this
residential area nor have a significant impact on the living conditions of the occupiers of the neighbouring property. For these reasons I conclude that it would accord with policies HSG16, HSG20, ENV1 and ENV2 of the Replacement Elmbridge Borough Local Plan 2000. For the reasons given above I conclude that the appeal should be allowed.
Tuesday, 13 October 2009
Thursday, 8 October 2009
1)having to speak to ticket counter lady and hope a)she understands my slurring and b)doesn't then treat me like a idiot. Unfortunately neither occur.
2)get her to understand that she will need to get my debit card out of bumbag
3)try and enter pin with knuckle
4)try and get her to understand that the phone she removed to get my debit card needs to be put back in the right way so I can pick it up later.
I know what I'm in for every time and there is a massive temptation just not bothering and as everything gets harder the temptation is given into more - but not today!
with aquired ticket I go in. not sure it was worth £12 but there was some good exhibits including ones by damian hirst.
only other challenge is the constant issue of lift buttons being too high to reach and having to wait for someone to help. I had to wait in a lift for 10 minutes once because the doors had closed and I couldn't reach anything! Finally someone else called it.
next challenge is lunch. Earlier I had got my carer to make a sandwich and put it in the wheelchair side pocket. The challenge now was to get it out! I had only just managed it last week but today - no. so have to ask passerby to help (see 1 above)
sit on south bank and notice how london's skyline is permanently spoiled by at least 20 cranes, but its still a nice place to spend time.
took myself across the millennium bridge and back before heading back to waterloo. got the faster surbiton train (always a bit risky because if they forget to unload me i'll end up in Alton or Portsmouth! ) and came home via kingston and bushy park. home at 5 in time for carer to help me with everything.
despite usual hassle, a good day out.