Wednesday, 23 December 2009

Olympia Horse show

Yesterday we took the boys to see the horse show at Olympia. Having been learning to ride for the last 6 months we thought they would like to see what they could do if they kept it up for a few years. Their cousin Alisha came along too and as usual was a great help with the boys. The show started at 1.00 with some showjumping   and went on to include shetland pony grand national, a dog agility competition, a very impressive display from the Met police horse display team, and the obligatory Santa appearance at the end. After the show, luke declared it was the best show he had ever seen; praise indeed and probably the reason why we witnessed the rare event of luke clapping during a show! the only downer on the afternoon was the 3 1\2 hour drive home caused by the 1cm of snow that fell as we left

Tuesday, 22 December 2009

Lucy

this is a bit of video footage from the summer shortly after we got our new dog, Lucy. For anyone that has been to our house you can see what our other dog Bodie looks like when he's not asleep on the sofa.

Gymkhana

video

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

Another Christmas

When I got my diagnosis in November 2007, there were statistically only even odds of seeing Christmas 2008.

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!!
.

Terrorvision


From the stadium extravaganza of Muse last month we went to see an equally entertaining band, Terrorvision at the somewhat smaller O2 venue in Islington. We have seen them several times since the mid 90s and they still put on a great gig with a charismatic frontman and a big enough back catalogue to ensure the setlist kept Tracy dancing throughout. Although they actually split up several years back they do 3 or 4 night mini tours every now and again which we try and get to.
You probably know this one
but I prefer this
or this

Like the O2 Area, the Islington Academy is a pig to get to taking over 2 hours. But as the only wheelchair visitor we had a little area roped off to the side of the stage with a pretty good view.

Friday, 11 December 2009

Boys Christmas Concert

OK, This one probably should be tagged as specialist interest only for doting relatives, but feel free to view should you feel the need to experience that timeless (or is that endless) festive event... The Christmas Concert!



video

Tuesday, 1 December 2009

Don't buy me golf lessons yet

I've just started in a drug trial with Kings College Hospital. I just scraped through the screening process with a FVC of 72% and started the drugs last Friday. I say "started the drugs " but as with all trials there is a 50/50 chance you'll be in the control group getting a bloody placebo! Mind you, the people talking the real drug in a trial a couple of years back probably wished they'd been getting the placebo as the drugs ended up accelerating there progression. Five days in and nothing to report. I'd entered into a progression 'spurt' a couple of weeks back which has weakened my legs and arms further (my arms are now at the point where if something is not mouse or remote controlled I can't do much with it ) Hopefully I'll stabilise for a bit.

Here are some of the details



Trial participants
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.

Alternative Treatment

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

Our boys don't do LSD.... Honest


A Story by Luke (Age 8 3/4)




If Tim Burton happens to see this, Luke is open to offers on a film deal as long as he can play the rabbit, and Johnny Depp plays the postman
 (as requested by Luke's agent..... Tracy )

Friday, 20 November 2009

Muse


We saw Muse at the O2 last Friday and as usual they put on a fantastic show. We first saw them about 10 years ago when they were supporting Skunk Anansie (who have just reformed) at Brixton Academy. We have since seen them a number of times at ever larger venues including a gig when they were supported by a very unknown Coldplay! What is impressive about them is the musicianship not only of frontman, Matt Bellamy but of the bass player and drummer who contribute equally, resulting in their often anthemic songs.

We had driven to avoid the chaos and logistics of getting back by train on the wheelchair late at night. Although we had left early in the afternoon, the combination of rain and Friday afternoon traffic made for a gruelling 2 hour journey. Arriving at 3 we made the most of the afternoon getting a late lunch before paying a visit to The History Of British Music " exhibition. We would have been happy to pay but it turned out our Muse tickets got us in free. Its an impressive exhibition with hundreds of pieces of memrobelia from the last 60 years. Original lyrics, guitars and stage outfits galore plus lots of interative stuff.




The O2 has great wheelchair access and helpful staff who get you to your seat without any hastle. And what great seats they were, no more than 30 feet from the stage. One of the few benefits of being in my position, and one that didn't go unnoticed by a man in the standing area who pointed out to us how lucky we were to have got such great seats.....!!?

Having got there early we were in time to see the support, Big Pink. Despite only recognising the final song, http://www.youtube.com/watch?v=t6N7bKuQHD0&feature=related  they were pretty good




Muse came on around 9 and played for an hour and a half, here is the intro and opening song as seen by someone not lucky enough to be in a wheelchair!!


Full review here

Wednesday, 18 November 2009

MPH Show

Made the annual pilgrimage to MPH Top gear show at Earls Court a couple of weeks ago.

Apart from being a very entertaining live show and impressive exhibition it has particular significance as when I went for the first time in 2007 I had just been diagnosed with MND. So I spent much of the show contemplating if I would still be around to see it again a year later and whilst I'm pleased that I not only managed to make it in 2008 but also 2009, I still have the same thoughts each year. I'm determined to be there in 2010 even if I have to take a ventilator!
With the help of friends and brother in law I took the boys for the first time with predicable results. They loved the show and seeing the famous people from the telly, but were less enthusiastic or cooperative looking at the stands.

Trying to effectively discipline the boys from a wheelchair and with unintelligable speech is incredibly frustrating (and may get its own blog entry soon ) but uncle david is excellent at stepping when necessary and being suitably scary.
Jake is not keen on loud noise (unless he's generating it) so standing next to Tiff Needel orchestrating six supercars having their nuts revved off was not his idea of fun, but it was mine!





Kew Gardens

Can't stand to be stuck indoors on a sunny day so headed out this morning with the idea of going into London. Texted a couple of friends who work in town on the off chance they were free for lunch but by the time I'd reached the station had got replies confirming they weren't. Was going to go anyway until I spotted a bus outside the station going to Kew Retail Park.
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.

This picture was taken (and obviously subsequently Photoshopped) on a previous visit with the boys


Spent a couple of hours tootling round in the warm November sun, and despite the lift for the treetop walkway being broken (again) and not being able to get into the Palm House because double door wouldn't open, had a lovely afternoon.

The chap in the indoor picnic area even managed to correctly interpret my grunts and vague gesticulations and proceeded to retrieve my sandwiches from wheelchair bag. Even more remarkably, he remembered to return later to open the doors that the last remaining visitors had thoughtfully closed when they left!

Return trip fairly uneventful, partially thanks to remembering about the nails I had seen earlier strewned over a section of pavement. Had to miss first bus as it seems they can't accommodate a wheelchair AND a buggy and a woman with the latter had beaten me to it. The driver in the bus parked behind said he would be leaving 15 minutes later and let me get onboard to wait.

Then, as what must have been considered compensation for my delay, he proceeded to show me a porn clip his bus driver mates had loaded on his phone. Bizarre. I would rather have got the earlier bus. I'd seen it before!!

Sunday, 8 November 2009

Brighton Break





On Wednesday Tracy and I had a short break away in Brighton... Tbc

Don't treat me like an idiot

The combination of being in a wheelchair and having slurred speech leads most people to the conclusion that I'm mentally retarded and it is becoming one of the worst features of this disease. (I know there will be worse things ahead but it is still infuriating)


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

Halloween



A week later they were still eating the sweets. Testiment to the sheer quantities they amassed as opposed to our rationing abilities!

Friday, 30 October 2009

Jake's Excited




Jake starts football club tomorrow morning and he is so excited he came downstairs a little while ago with all his kit on. He is now asleep with his kit laid out on the floor in the shape of him and his football book open on the bed..... Bless. I so hope he does ok and is better than I was at his age!!

What's worse than having MND....

Having MND and a stinking cold. Its the last thing I needed. The last bad one I had was last year but at least then I could blow my nose! Now I cannot lift my arms high enough and I dont have enough puff to have much affect. On the plus side, as the cold goes away its nice to experience the sensation of feeling better than befor; a sensation which has been alien to me for two years.

Friday, 23 October 2009

Family Tree

I have been spending many an hour on an ancestory website, putting together the Evans family tree. Starting with a few birth, marriage and death certificates my mum had I continued by scouring online records. Ordering a couple of birth certificates along the way enabled a dead end to be opened and a correct household in a census to be confirmed. You'd be amazed at how within a fairly local area you can find two families of 4 or 5 members with the same set of names. Having surnames in the tree which include Evans, Williams and Stephens doesn't help! My mum's side had some more unique surnames but has been hampered by her mum being French.

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

Sunny Days

Spent the morning enjoying the sunshine in Hampton court gardens -most pleasant. Going to watch Jenson Button throw away some more points later

Pissed off

Second night in a row to have friends over and not be able to contribute to conversations. Stammer and slurring combining to make me unintelligable. Have left to go on computer. I'm sick of the constant struggle and feeling uncharacteristically defeated

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

Our Extension

We have finally got started on our extension no thanks to a little Hitler at Elmbridge planning. the downstairs room adjacent to the boys room will be a new bedroom which can be used by either of our mums when they stay over, a carer or for me when there is too much equipment to fit in our bedroom. It will hopefully be finished by end of November.

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
impeded.

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.



Thursday, 8 October 2009

Up to London

Ventured up to London today to make the most of the last mild day and for a change of scene from Bushy Park and Hampton Court. Getting up and out now takes the best part of two hours with carer assistance so leave at 11 on chair and head for nearest manned station - Hampton court. Takes about 15 minutes giving me about five minutes to get ramp sorted. Approached staff member with "train dispatch" jacket and get response of "I don't do ramps, go and find the guard" an unusually unhelpful response. so with train about to leave I go to look for guard. Manage to find and get aboard. Reach Waterloo, ramp arrives and off I go. Accessing the south bank is a breeze and on a warm sunny day its a good place to go. I had come up a week earlier with less time available to see if I could get to tower bridge, which I could despite the uncomfortable cobbles around Tooley St. But I also discovered that the Thames Path at Blackfriars has been shut until 2011! So wheelchair users have a half mile detour to rejoin path 100 yards further up. Anyway I thought id go to Tate Modern where there was a Pop Art exhibition. was hoping the trip wouldn't require any tricky tasks but exhibition required ticket which involves following

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.

Tuesday, 6 October 2009

Cold weather

have been spoiled by the warm weather. Getting out is such a pain and unlike last winter I need to have someone to help get everything on and be sure someone is here when I return to get it all off again

Thursday, 1 October 2009

Expensive Trip to Wisley


went to look at the gardens and ended up buying this. tracy mentioned she had no ideas for my birthday so I mentioned that I liked this. It looks great in our garden.