Thursday, 11 September 2014

Summer Update


Ok, time for an update as I can't do much else this week (more on that next month). Again I have neglected the blog so a quick update on some of the summer's activities. At the beginning of the school holidays we took the boys to the Harry Potter studios near Watford. Despite the distance, it's a very easy journey, being 95% motorway. It's a good day out with most of the sets and props on display. The boys' interest wained quickly which was disappointing but not altogether surprising. Tracy and I enjoyed it, although it's a scenario where relying on someone else driving the wheelchair is very frustrating. I can't turn my head very much, so my field of vision is very narrow, requiring the driver to constantly turn the wheelchair to directly face exhibits. Kadvi does a brilliant job of driving and seems to almost read my mind, but it's no substitute for being in control yourself. 


During July I had a very busy weekend including a 10cc concert, Farnborough airshow and Monty Python at the O2. 10cc was the unexpected highlight. Graham Gouldman is   the main surviving member and the concert was split into two halves. The first was an acoustic set of the songs he wrote for other artists, including many well known songs. The second half was a 10cc gig. A thoroughly enjoyable outside concert on a warm summer's evening. Farnborough was disappointing, not only because of the disabled parking fiasco but the airshow has become very stale.Only 3 fighter jets this year, too much dull stuff. Granted the Vulcan is stunning and the boys names are on the bomb bay doors, but who wants to see bruce dickinson fly around in a private jet or an avro anson. Where was the Draken, Viggen, B52. I think now the Russians don't come anymore it's a shame. Monty Python was good. Some of it failed to hit the mark but you can't fail to smile when they perform "Every sperm is Sacred" or "Sit on my face and tell me that you love me" And obviously the Parrot Sketch and the Lumberjack Song are among the hits. 

In August Tracy took the boys to Pembrokeshire with her family. It's the first holiday I haven't participated in but it's so complex to accommodate everything I need and we have a cruise booked next summer, so I really didn't mind. They had a great time with many activities that the boys loved. I went to the coast for a day trip with my mum and sister. It was perfect weather and we went to Worthing and Littlehampton. A lovely day out which I thoroughly enjoyed. However I discovered that 100 miles on twisting A-roads is the limit for one day! 

The last event of the summer was Wheels and Wings at Dunsfold Aerodrome. Tracy had advised them of my situation and they offered complementary VIP parking and access to the  covered veterans enclosure if it was raining. Totally opposite experience to Farnborough. The highlight of the show was the two remaining airworthy Lancaster bombers flying together. Although when the Vulcan is flying it always steals the show. 




 



Last week I went to hospital to get my peg feeding tube  changed. When the original tube was fitted 5 years ago, like my eyegaze computer, I didn't expect to survive long enough to need a replacement But with the tube starting to split I knew I had to bite the bullet. I knew the procedure would be very unpleasant because with my breathing so weak, any sedation could be dangerous. The appointment was at 8am which meant getting up at 6am. The idea of the early appointment was to do the procedure mid morning , so if I needed sedation they could monitor me during the afternoon, thus avoiding the dreaded overnight stay. But of course this is the NHS so the procedure didn't start until midday. The procedure was even more unpleasant than I expected and quite scary at a couple of points. In summary it was 15 minutes of choking and very difficult breathing while a 1cm endoscope was pushed down my throat and into the stomach twice,  to remove the old tube then fit another. So having had no sedation I expected to be on my way immediately. Of course this didn't happen, I was kept waiting until 5pm because the ward staff said I had to wait for test results. I only complied because I had overheard the surgeon say after the procedure that "he was a little tachy" which I know means tachycardia, so I thought they could be waiting for a second opinion. But of course they weren't, it was just the standard quote which actually means "we have no fucking clue what's happening". So 10 hours in hospital for a 15 minute procedure. It's like EVERY other hospital experience. Excellent clinical staff,  totally disorganised , chaotic and generally clueless ward staff. Anyway it's done

Thursday, 21 August 2014

My Films

Well there's actually a lot to catch up with, but for now I want to tell you about the films I have been making. It started when I decided to make a film about living with MND to help others deal with all the equipment, and give them advice based on my 7 years experience. The film was made by Bernard Bushnell, a family friend of my fellow MND suffering friend, Liam. The 30 minute film took a day to shoot, but Bernard decided that a 2nd version with more of a focus on the impact of the disease on family life, would be a good showreel to further his film-making career. So I benefited from many more hours of his filming and editing time. And as a result we have a 20 minute documentary and Bernard has been successful in getting a shorter version on the BBC Fresh website. This could lead to a 60 minute full documentary on BBC3 next year.
Finally I was determined to make a 60 second version, with the view to getting it on TV as an ad campaign to raise awareness and funds. BUT the minimum cost of airtime for a realistic ad campaign is £25k. So if anyone knows of any organisations who could contribute a few grand, let me know.

This ALS Ice Bucket Challenge phenomenon has been unbelievable. When I watched celebrities participating in this challenge, I broke down into a sobbing mess. Because for the first time since receiving my death sentence diagnosis, I didn't feel forgotten and ignored by the world outside of my friends and family. This has been the single most important awareness and fundraising event for ALS and by god we need it.

The documentary on BBC Fresh goes live next Wednesday 27th August, the 20 minute documentary will be put online shortly after and my initial information film will be on the MNDA website soon. But here is the 60 second potential ad.

Saturday, 12 July 2014

Hospice Stay

This week I have been on a respite break at the hospice. But unlike previous breaks, I have my live-in carer, Kadvi staying too. I first visited the hospice in 2008 shortly after my diagnosis of a terminal illness. Despite all the positive press about hospices being wonderful places, this counts for very little when it's YOU that has qualified to use one. Ultimately hospices deal with end of life.

If you read my previous blogs during hospice stays, you'll know that I feel out of place here, it's not for me. And this time I feel positively fraudulent!!  This is because the longer I keep beating the survival odds, the more convinced that I will be around for a good few more years yet. I guess I feel I have now disqualified for hospice eligibility.

If this is true, I guess it's good although it will make any subsequent re-qualification difficult to accept. I just find the whole environment rather patronising. The way everyone talks to you, medication confiscated so you have to request it, having to have hospice staff oversee every hoisting routine. I find it difficult because despite MND I have refused to relinquish control of anything. I know kadvi finds it difficult too. Don't get me wrong, the staff are all lovely and the hospice and gardens are wonderful. It's just not for me..... Yet.
However we have actually spent little time at the hospice. On Wednesday we went to Hampton Court Flower Show, yesterday we went to Painshill Park and the local pub in the evening,  and as I write,  I am sitting at Newlands Corner viewing the Surrey countryside.

It's been 3 years since I visited the flower show but having the live-in carer, events like these are possible again. It's a bit of a struggle getting the wheelchair through the crowds and much of show requires going off the path onto bumpy grass, but it was a nice day.





Painshill park's paths have improved since my last visit, 2 years ago, so getting around was easier than expected. I might even buy membership next time



The decision to meet Adam in the pub was a spur of the moment thing. I don't think I have been to a pub for over 3 years, probably mainly because of previous bed time limitations as much as the unappealing prospect of watching everybody else eating and drinking. But actually it was very enjoyable. My sister and Kadvi joined us until 9.30 then Kadvi returned with my car at 10.30. I think I will do it more often.

So ironically, despite my earlier comments and with Kadvi's considerable help, this has been the easiest hospice stay. But I think I will look seriously at coastal, disabled accessible and equipped holiday accommodation. Obviously it won't be free like the hospice but it would give me a base to go out from to new places. If I find a good place, I might even do it more regularly . Next weekend we are going to see 10CC (showing my age), going to Farnborough Air Show, and seeing Monty Python at the o2 arena. Phew.

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Friday, 13 June 2014

The Shard

Today I went to the Shard. It was meant to be a straight forward journey; drive to Hampton Court station, train to Waterloo, Jubilee line to London bridge. An hour tops. Unfortunately it didn't go exactly to plan. At Waterloo we were told the lifts to the Jubilee line were unavailable because of planned maintenance...... until the end of July. I made the guy wait while I typed out and read at full volume "that is fucking ridiculous". Because it is. Wheelchair access on the tube network is absolutely disgraceful anyway. Having one of the few accessible tube lines inaccessible from one of the world's busiest stations, for 2 months is inexcusable.

We were told we could access the jubilee line from Southwark station, which was a 10 minute walk away. Luckily it was a nice day so we headed off. We reached the station and got the lift to the platform. The train arrived, doors opened and we saw a 5cm height difference between train and platform which is impossible in this wheelchair, especially when there's also another 5cm horizontal gap between train and platform. I am sure the last time I travelled from Waterloo, the access was better but then I had my offroad wheelchair which easily coped with these types of challenge.

I think when wheelchair access is considered during construction projects, it's based on manual wheelchairs which have big wheels and can be tipped back easily. Power chairs actually need LEVEL access. Wheelchair users aren't all Ade Adepitan!

So we walked for another 20 minutes to the Shard.

Twenty quid and four lifts later we were 800 feet above London. Needless to say, the view is amazing. Seeing helicopters flying beneath you and Big Ben almost indistinguishable from it's surrounding buildings puts your height into perspective.

We stayed for around 30 minutes before getting the bus back to the OXO tower, spending some time on the Southbank and returning home. Kadvi wasn't phased by any of the challenges and maintained good humoured throughout so overall it was a good day out and have learned that buses are now the only way of travelling within London.