Saturday, January 2nd 2010

Slight change of format for the New Year. From now on I’ll be posting the calendar entries as near to the time they occurred as possible rather than waiting up to a month. Scattered in amongst these entries will be the special topics. Let’s see how this flies.

An afternoon at the cinema

Avatar, the film that I have been eagerly awaiting for all last year finally hit the cinemas shortly before Christmas. My brother Jason very kindly took me to see it this afternoon at my local Odeon complex. Before disability appeared on my radar I had a preference for the Vue Cinema in town as it offered larger screens and a superior viewing experience. Unfortunately though it’s not the best place to go if you’re wheelchair bound as the disabled seating is right at the front of the screen which forces you to crane your head back as if staring up at the side of a skyscraper from street level. In contrast to this wheelchair spaces are allocated at the rear of the Odeon near the doors so you benefit from both a good viewing position and easy access.

Avatar had been in the making for a number of years and was generating a lot of hype because of its revolutionary film production methods. With James Cameron (the director of Aliens, The Abyss, Terminator, Titanic et al), as the creative force behind the movie, expectations were high. I was certainly curious to see how realistic and believable a whole computer-generated world would look. I was not disappointed! Avatar is simply stunning to look at. There is no doubt at all that it represents a major leap forward in how a movie can be portrayed. I sat there enthralled admiring the level of detail that had gone into the making of the movie. It’s hard to believe that the only real elements are the human actors.

I’m not going to spoil the whole story for anybody who has yet to see it but it is basically about a paraplegic marine who travels to the world of Pandora to negotiate (via a remote-controlled Avatar body of a native) a peaceful resettlement of its indigenous population who are located directly above a vast deposit of a precious mineral which is highly valued back on Earth. At its heart the story is about the strong preying on the weak and the greed of large corporations. But it is also a love story about an outsider finding a new way of life. I suppose on that level comparisons could be made with films such as Dances with Wolves. In fact some of the critics have cruelly dubbed it ‘Dances with Smurfs’ (because of the skin colour of the natives). Anyway, highly recommended whichever version you might see. Yes versions because this is one of those films you can either watch in traditional 2-D, digital 3-D or 3-D IMAX. I saw it in 2-D as wearing one pair of glasses was enough to deal with without worrying about 3-D glasses which I thought might cause me a problem on such a long film. Mind you having just said that I would imagine the film to be absolutely stunning on a 3-D IMAX screen.

On my knees

After the film finished we left the cinema and headed back to the car which was parked just outside in the disabled parking area. Unfortunately I was brought quite literally back to Earth with a bump. After sitting in my wheelchair for a few hours my legs had grown quite weak (in a similar fashion to when I had spent a day in London back in August). So when I tried to stand up (with the help of my brother) to walk the few steps to the passenger seat my legs simply buckled and gave way and I found myself on my knees on the roadside. My poor brother had to somehow struggle to keep me upright and from falling over face down whilst at the same time half carrying me towards the car. There’s not much of me these days but even so I’m still heavy enough if my entire weight has to be supported by somebody else. Being carried in this fashion I felt completely helpless, like nothing more than a dead weight. Both my arms and my legs had no energy in them and my head was drooping forward. Frustratingly there was no one around to help us but eventually my brother managed to get me bundled into the car.

Once we arrived back home I had to wait patiently in the car whilst my brother went searching for a neighbour who could help him get me indoors. With two pair of hands I was lifted out of the car, loaded into the wheelchair, wheeled into the house, lifted onto the stairlift, taken upstairs, and placed in my study. By this time the call of nature beckoned so I had to endure a similar embarrassing situation to the one I did back in September when I took a fall, i.e. being held up from behind by my neighbour whilst I stood in front of the loo with my brother assisting with my clothes. This disease destroys all your dignity!

I stayed in my study all evening too frightened to move and knowing full well that at least for the time being my legs had given up the ability to bear my weight. Francesca arrived to do my evening meal but all I could do was pick at it. My appetite had deserted me. All I could think about where the implications if my leg strength didn’t return. I felt frightened to drink too much in case I needed to visit the loo and couldn’t. What a situation to get into!

My brother returned late that evening to assist Francesca get me into bed. With my legs so unresponsive it was very difficult for the pair of them to lift me out of my study chair and onto a glide about commode which was used to transport me from my study into my bedroom. From there it was a transfer to the edge of the bed where I was undressed and put to bed. The commode was left in a ready state adjacent to the side of the bed in case I needed it in the night.

On my own again with the lights out and lying paralysed and helpless in bed I pondered what tomorrow would bring. The question is have I turned a corner or is this just a blip? Will I regain my strength or is life about to get a whole lot more difficult? The last time my leg strength had deserted me was back in September in the A&E department of our local hospital. But that was months ago and in that time my legs have continued to waste so it may not be so easy to recover the lost strength. But even if I do I know full well that it is only a matter of time before I lose the ability to see the world when standing up. So depressing.

Before I sign off today I would just like to say a big thank you Jason for taking me to the cinema. Really enjoyed the movie, one of the best I’ve seen in a long time – and the first I’ve ever seen in a wheelchair. Thanks for everything you did to make sure I got home safely. After today’s episode I’m sure you might disagree with that old Hollies song ‘He ain’t heavy he’s my brother’ smile_regular. And thank you Francesca for everything you did today to try and lift my spirits when I was feeling a bit down and fearful of the future.

Thinking about today’s movie, I could do with an Avatar body myself right about now smile_regular.


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The month of May – part 3

Calendar entries highlighted in yellow

14th May – Goodbye to ‘Mark’s Meadow’ / A decision made

Ann has started putting into practice the physiotherapy techniques learnt yesterday. We’ve decided to make this the first job of the day so I waited patiently in my bedroom for her to arrive and then sat on the bedside chair whilst she lifted and folded each arm in a variety of ways and repeated each exercise a number of times. She then moved on to stretching and straightening the fingers & thumbs which can be a real problem with MND as they will have a tendency to curl inwards over time. Hopefully this should help prevent my muscles from stiffening up. It should also prevent me from experiencing difficulties dressing by maintaining my range of motion.

‘Gavin the Gardener’ turned up early this morning whilst I was having my personal care and has made a start on tackling the garden. He’s trimmed back the Mexican Orange Blossom shrubs that were encroaching on the pavement at the side of the house, mowed the front, back and side lawns and trimmed the edging. It’s starting to look tidier already, especially without all those Dandelions in the lawns. But there is still a lot of work that needs doing before its back to how I had it early last year. I’ve booked him in to come back next week for a couple of hours and will continue this until it’s up to scratch then just have him come along once a fortnight to keep it maintained.

I had a surprise phone call at lunchtime from Eddie, the PEG nurse specialist who I met recently to discuss tube feeding. He’d called to find out if I’d reached a decision yet regarding having the procedure done. I explained that I had and that after careful consideration had decided not to go through with it at this time because I was showing no signs of difficulty swallowing, chewing or indeed speaking. All my symptoms are spinal onset related and although it is possible for bulbar symptoms to develop there was currently no indication of that. I explained that I was uncomfortable having an invasive procedure that I couldn’t foresee having a need for just yet, but having a plastic tube dangling from my chest would be a constant physical reminder and would still need maintaining. I realise of course that the reason it’s being suggested at this time is because of the decline in my lung function, nevertheless it just doesn’t feel like the right time for me. He was very understanding and said that because he already has the referral I would be treated as a priority case and could have the procedure done at short notice if I should change my mind (of course what he didn’t say is that it would be subject to my lung function). In the meantime I’ll keep an eye on any signs that suggest the disease is developing bulbar symptoms.

15th May – Monthly visit to my GP / Some good news

Jim & Val (Basingstoke NeighbourCare) called this afternoon to take me down to the doctors surgery for my monthly appointment with my GP. As usual just a chat about how I was doing and any new problems I was experiencing, as well as filling her in on my adventures down in Southampton. I told her about my decision to withhold on having a PEG feeding tube fitted at this time and my reasons for doing so. I explained that my decision had been made after careful consideration, of talking to people and researching other people’s experiences. In other words it had not been made out of ignorance. I was surprised to hear her say that she felt I had made the right decision although she is not the first person who has said that. Others who have experience of PEG and MND also felt that it was not suitable at this time.

Whilst at the surgery I also had my 6-monthly blood test. This is the one that monitors the effects of Riluzole on liver function. You may remember from my post in November that ordinarily after being on Riluzole for a year and having blood tests every 3 months I would then move to an annual blood test. However, in my case there had been a couple of episodes of elevated Bilarubin and so as a precaution the Neurologist had decided to take an interim test half way through the year. Fingers crossed that the results come back okay.

Had a phone call this afternoon from the care agency with some good news. They’d just been notified that Rachel (Social Care Manager) had been successful in gaining funding approval from the NHS for extra care hours. When I asked how many hours (thinking it would be a compromise) I got a real shock when I was told that we’d got everything we’d asked for! This is such good news because lately with the increase in personal care, the addition of my arm/hand exercises, and me slowing down, it was starting to feel quite rushed and stressful. My carers were struggling under the time constraints which were often causing them to over run. Now things should be a bit more relaxed at both ends of the day plus I’ll gain a 30 minute lunchtime call and even a slight increase in social time. I’m really pleased about this as I’ll have someone around the home to help with anything I need for more of the day plus I’ll have more company and not feel so isolated. In one fell swoop my care package has doubled in size! But this is the nature of MND. As time goes by it sucks up more and more resources. My only concern is whether my existing carers will want to pick up all the extra hours. Because I will now be getting 28 hours care a week it will be prudent to introduce a fourth main carer (particularly with the summer holidays on their way) to spread the load. I know who I would like I just don’t know if she would be able to do it yet. Stay tuned!

16th May – Beam me up Scotty!

I had a pleasant evening with my brother (Jason) and his wife (Chery) who had treated me to a trip to the cinema to see the new Star Trek movie that opened last week. For me it was like a trip down memory lane as Star Trek is one of those shows that I grew up with as a child of the sixties and I can remember eagerly awaiting each new episode on the (black & white) TV. Gosh, that’s showing my age isn’t it? Today we’ve become used to science fiction and elaborate effects and its becoming increasingly difficult to get that wow factor. But the amazing thing about Star Trek is that it originally aired in 1966! That’s 3 years before man landed on the moon and decades before personal computers, the Internet, mobile phones etc. I started watching it when I was just 6 years old. Warp drives, transporter beams, tricorders and this huge ship carrying 400 people kept me enthralled for 3 years. Over the years there have been various attempts to re-launch the franchise with varying degrees of success, but none managed to capture the magic of the original because of its place in history.

The film I saw this evening was a prequel to the classic sixties series and brings the main characters (who’s never heard of Kirk & Spock?) together for the very first time and before the now famous ‘five year mission to seek out new life and new civilizations’… I enjoyed the film. It had a fresh look to it, featured some great special effects and set design, had plenty of action to keep the film moving along at a brisk pace and had enough references to the original series to keep the fans happy.

Getting from my house to my seat in the cinema was the stressful part. My brother’s car is very low to the ground and practically impossible for me to climb out of now so I needed his assistance to pull me upright enough for my own legs to take over. Walking from the car park to the cinema was tiring but not nearly as much as climbing the stairs to the cinema or the steeply raked stairs in the auditorium which left me so weak I was all but ready to fall into my seat. At the end of the movie I again needed help being pulled out of my seat. I was relieved to get back home but very grateful for the evening out. Thanks Jason & Chery.

18th May – New care package hours begin / Washed like a baby / A bad evening

Today saw the start of my newly increased care package. And to kick things off I had Ria, my original main carer from when I started homecare, called in for a couple of hours this morning. She was being assessed for her NVQ level 2 and had arrived with an assessor to watch how she worked. I was one of her few clients that she’d cooked extensively for so I had agreed with her a long time ago that when she did the food preparation and handling part of her NVQ she could use me. And it was so nice to have her company again if only for a short while. It felt a little strange, however, trying to eat my breakfast with an assessor sitting across from me writing copious notes.

I took a fall late this afternoon whilst walking up the stairs. I’m still not sure if I tripped or if my leg gave way as it happened so quickly. One minute I was upright approaching the landing at the top and the next I was getting a close up view of the carpet. Fortunately I don’t appear to have suffered any cuts, bruises or breakages, although my chest hurt for a little while afterwards as it was this part of me that hit the edges of the stair treads. But the real problem came next. Because I have so little upper body strength and my arms fold as soon as a load is placed on them I was actually trapped sprawled out across the stairs. I just couldn’t push myself up. In the end I managed to wriggle and turn myself around so that I was sitting on the stairs looking down. With my legs now lower then my backside I was able to propel myself up into a standing position although I was trembling as I did it because of the fear of going too far and having momentum carry me so far forward that I ended up falling down the stairs. Fortunately this did the trick but left me pretty shaken up for a long time afterwards. In that moment it was rammed home to me how vulnerable I have become and how dangerous my home, the one place I should feel safe, has now become.

Tonight I gave up the last vestiges of my personal care and had Alison give me a shower. In all honesty I should have given up ages ago but foolish pride, plain old stubbornness and a determination to fight what is an unfightable disease kept me going past the point where I was doing the best of jobs. In the last couple of weeks the risks associated with showering myself had become too great to ignore. Now I’ve crossed that threshold and handed over all my personal care I can relax and just accept it. My lovely carers will do a much better job than me and I’ll save a lot of energy (not that I have a lot left) and feel much safer.

I had one more fright left reserved for the end of the day. I got trapped upstairs when I went to get another telephone handset (because the one by my laptop had a flat battery). As I climbed the stairs I could feel my legs getting weaker and weaker and barely made it to the top before quickly sitting down. But when I tried to get back downstairs again I lost all confidence as my legs had grown quite wobbly and I was struggling to stay upright. After several failed attempts of walking to the edge of the landing and backing away again because my balance didn’t feel right I reluctantly had to phone my brother to come round and help me get to bed. I felt embarrassed at not even being able to climb my own staircase and fearful of what tomorrow would bring. Thank you Jason for everything you did that night.


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