Tuesday, December 28th 2010

Normality returns

After the long drawn out run up to Christmas that seems to start before some people have even taken their summer holiday, the actual day always seems something of an anti-climax. It certainly flew by just like any other day now that care consumes such a large percentage of my waking hours. And with little of interest to punctuate it the day was soon forgotten. Christmas itself held little attraction for me this year and I am much more looking forward to being able to get out of the house on a regular basis and get much-needed fresh air. I am truly tired of living in an artificial environment. That for me will be like Christmas every day although I suppose you can only truly understand that if you were in a similar situation.

As for my furry little friend, well he did very well this year from Father Meerkat. Auntie Debbie gave him a full set of winter knitwear that she had specially made, which included a bobble hat, scarf, mittens on strings, little booties and even a tail warmer! He’s all set now for his first adventure out in the snow just as soon as we get some more! As for me, I got him a radio controlled locust! I was going to get him a clockwork beetle but I thought that he might be getting a little bit old for that kind of thing so a locust it was. You should have seen his eyes light up when he unwrapped it. For the rest of the afternoon I sat there watching him skitter around the carpet chasing it underneath the furniture. What it is to be young! And as a special treat I bought him a box of chocolate coated scorpions, yum yum!

On a more serious note I would like to thank my brother Chris for the superb top of the range hi-fi quality speakers that I can plug into my laptop. At long last I can listen to music more or less as it should be heard. Thanks also to Jason and Chery for the lovely warm looking fleece jacket that I will be able to wear when I start going out in my wheelchair during the colder months.

Before signing off I would like to say a big thank you to Suja and Debbie for providing the lion’s share of my care over the Christmas break and to Ann for helping out and cooking me a delicious Christmas meal. I really must have a word with her about portion sizes. With my pitiful appetite even I was surprised by how much I managed to eat… and that was even before I started tackling the sherry trifle!

I’ll leave you with a few pictures taken over the Christmas holiday.

With my furry little friend on Christmas day

With my little friend proudly showing off his winter collection that auntie Debbie knitted for him. Check out the tail warmer πŸ™‚

With a very contented meerkat who has just eaten a whole box of chocolate coated scorpions πŸ™‚

Father Meerkat has come to join the fun!

With my brother Jason and Chery on Boxing Day

With my brother Jason and Chery on Boxing Day, oh and a certain little someone!

Mark

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Saturday, October 2nd 2010

The weekend begins

For the first time since arriving here at St Michaels Hospice I am ‘meetings free’ and therefore able to spend the time how I wish without having to rush around and get ready before people arrive. With the weekend here we are now on reduced staffing levels and the car park outside is mostly empty. I’ve been chatting and catching up with nurses and care workers that I met a few months ago and it has been really nice these past few days seeing so many friendly faces again. It’s not actually taken me that long to settle back into hospice life. I guess it’s a case of ‘wherever I park my wheelchair – that’s my home!’

Because of all the modernisation work that is currently going on at the hospice I’ve not been able to make use of the lovely conservatory that I used to have all my midday and evening meals in whilst watching the squirrels and birds. It’s currently closed off to patients because they are using it to store lots of furniture whilst they work on upgrading some of the bedrooms in the in-patient unit. Consequently there aren’t many places inside the hospice to go at the moment. Fortunately however Debbie called in during the afternoon (as a guest now that my care agency is wrapping things up with me) and we were able to go outside and have coffee overlooking the hospice garden and fountain. It suddenly dawned on me as I soaked up the atmosphere how many of the noises I was hearing from the surrounding environment which although familiar hadn’t been heard for many months. I really do need to get out more!

I’ll sign off now with a few new photos that Debbie kindly took on my camera this afternoon which give you an idea of where I’m spending most of my time. You’ll notice too that a certain someone decided to stow away in my luggage!

Sitting by my makeshift desk in my room at St Michaels Hospice. 2nd October 2010

Sitting in my room at St Michaels Hospice. 2nd October 2010

One of the guards on special detachment duty assigned to 'protect' me here at St Michaels Hospice! My feisty little friend is turning out to be a real ladies meerkat and a big hit with the night staff. He gets more attention than I do πŸ™‚

Mark

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Tuesday, September 28th 2010

Emergency measures

I’ve been inundated with worry lately and generally feeling very low. As mentioned previously my care package as it is now will no longer be supported after this week. Obviously because of the extent of my disabilities I cannot be left on my own, and as my care manager has not had sufficient time to make alternative arrangements we are having to resort to emergency measures.

Yesterday afternoon my care manager and a member of St Michaels Hospice called round to discuss re-admitting me to the hospice on a short-term basis whilst they try to figure out what to do with me. The hospice is normally only really geared for short-term stays of around 2 to 3 weeks unless health needs deteriorate. So this appears to be roughly the time scale we are looking at to get things sorted out. For now though the immediate plan is to admit me tomorrow (Wednesday) morning.

As much as I like the hospice (and it is indeed a wonderful place) I would much rather stay in my own home at this time as I have only just recently left the hospice. Unfortunately they do not have the resources in their Hospice at Home team to offer me the level of support I would need to be able to stay in my own home. But of course the hospice is an excellent second choice, and I know without a shadow of a doubt that I will be well looked after so at least it is a worry off my mind, although what happens afterwards is anyone’s guess at the moment.

Did you notice in the first paragraph I mentioned my care package ‘as it is now’? The reason for that is because my care agency has agreed to continue to support me in the mornings whilst I am at the hospice. The reasons are twofold: the first is to lighten the load on the hospice staff, and the second is to aid in my transition to a new package. So the good news here is that my regular morning carers will continue to take care of me at least for a few more weeks. Unfortunately for everyone else it will soon be time to say goodbye.

This time I shall be going to the hospice more prepared than I was last time and fortunately I shall be taking my new wheelchair so at least I’ll have something comfortable to sit in all day. Unfortunately however I may not get it straight away as NHS ambulance staff are not allowed to move wheelchairs down flights of stairs, apparently. I may have to wait until the following day. Oh yes, I’m also taking my laptop computer again so hopefully I’ll be able to post frequent updates as the situation changes.

So for now I’ll sign off but just before I do I’ll leave you with a few photos that were taken over the weekend. The first few are with Suja, the delightful young Nepalese girl who created a big impression with me recently with her pleasant personality and hard-working proactive approach to care. As for the last picture it is somehow fitting that it should be of ever-loyal ever-reliable Ann. Tell you something, if I’d had a few more people like her in my care package we would never have had a problem. Sigh…

With the lovely Suja. 25th September 2010

With Suja. 26th September 2010

With Suja and one of the guards who has muscled in on the action! :-). 26th September 2010

With ever-loyal ever-reliable Ann. 26th September 2010

Mark

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Thursday, August 26th 2010

Two nice surprises!

I’ve been feeling really tired and weak lately. It’s been getting harder to wake up in the mornings and even when I am awake I still don’t feel I have that much energy to tackle the day ahead. This morning I felt so tired that I went straight back to bed after all my personal care was done, and in an effort to conserve some energy didn’t get up until midday. It’s the first time since having MND that this has happened. It was probably just as well that I did because my carers and family had arranged a surprise birthday outing to Audleys Wood Hotel for afternoon tea and I was going to need some energy for that. But first they had to get me down the stairs…

Debbie had made arrangements with a private ambulance company to get me down the stairs and up again later in the day. So shortly after midday two very friendly ambulance men from Southern Country Ambulance Service, Darren and Andy, turned up and after having hoisted me onto a stretcher chair, carried me down the stairs. Being the nice guys that they were they even brought my wheelchair down the stairs to save my carers struggling. The last part of their involvement (until I returned home later in the day) was to transfer me from the stretcher chair to my wheelchair where I would sit patiently until the taxi arrived.

In the meantime Debbie had arranged another little surprise for me, and it wasn’t long before there was a knock at the front door and in walks Francesca, who I had not seen for a while, wearing a big smile and bearing a card and present for me! She had taken some time out of her work day to wish me a happy birthday and to see how I was. And so for a short while we were able to enjoy each other’s company and to catch up on what had been happening. I had missed Francesca’s involvement in my care (as well as her friendship, IT support and blog photographer rolls) and it had been a sad day when her other work commitments took over. But here she was with Ann and Debbie and for a brief moment it felt like old times. Well I just couldn’t let the moment go without getting some pictures so here they are…

An unexpected but very pleasant surprise visit from Francesca

With Francesca and happy πŸ™‚

With Debbie and Ann, two of the three architects responsible for my birthday treats (the other being my aunt)

Ann and the birthday boy!

Sometime later a taxi pulled up outside the house to take me to the hotel. Unfortunately despite explaining to the taxi company exactly what sort of wheelchair I had at the time of making the booking (and them saying that they could do it), we soon hit problems. As I was wheeled up the side entry ramp into the taxi I almost had the top of my head chopped off as the taxi driver suddenly realised that I was sitting too tall. So back down the ramp we went and in the process grinding the chair on the pavement. A few adjustments later and I was more reclined in the chair so able to enter the taxi. Unfortunately in this reclined position the wheelchair could not be turned to face the rear seats, and as the taxi driver was quick to point out, without being able to do this he would not be able to take us anywhere. So in the confined interior of the taxi the chair had to be readjusted into an upright position so that it could be spun around and held in position by a safety belt. However, I was now in a very uncomfortable position. My head felt unsupported and liable to topple forwards unless I held it firmly in an upright position, however this meant that the top of my head was then being pressed firmly against the roof of the taxi. Just as well then that we didn’t have to travel that far out of town to reach the hotel because I certainly didn’t feel that safe and it was very uncomfortable. When we arrived at the hotel the taxi driver surprised us with the news that his particular vehicle was being taken off the road at 4 PM and that we would have to contact the booking office after 5 PM to arrange for return transport (never mind the fact that this had already been booked and made clear). Not a good way to start the afternoon.

Audleys Wood Hotel is a 72 bedroom four-star luxury hotel built in the 1880s and recently refurbished. We had to enter via a side entrance as I believe the front entrance isn’t wheelchair friendly. Even so, the corridors leading to the room we had reserved were rather narrow so some expert wheelchair driving was called for! The grand drawing-room where our afternoon tea was served was very ornate with its high ceiling, dark wood panelled walls, a large fireplace, hanging tapestries, a very long wooden table that you would need binoculars to see the end of, and high back padded chairs.

Our traditional afternoon tea arrived with pots of fresh leaf tea and silver trays filled with daintily cut finger sandwiches with various fillings including (of course) cucumber, ham and wholegrain mustard, and egg and cress. This was followed with freshly made (and still hot) scones with strawberry preserve and delicious clotted cream. And to finish off a large assortment of cakes were provided, but by this time I was struggling to find room! My appetite just isn’t the same anymore but hopefully everybody else in our little party had plenty to eat. They certainly seemed to be quite generous with the amount of food being offered but perhaps that was partly down to the fact that we had anticipated more people coming!

Not a great picture technically but one of the few I was able to do anything with from our afternoon spent at Audleys Wood Hotel. Shown here are my brother and his wife, my nephew, my cousin and my aunt and uncle

With my aunt Joan, cousin Suzanne and uncle Alan at Audleys Wood Hotel

When it came time to leave we were in for a shock. The taxi company informed us that they had no suitable vehicles available and were not even prepared to organise alternative transport for us via another company. Eventually Debbie managed to locate another company but it would mean being stuck at the hotel long after we were due to leave and jeopardising our meeting with the ambulance crew who would be getting me back upstairs. In the end it was Alli who saved the day by asking her father (who drives a minibus for disabled children) to come and pick us up. What a lifesaver! Unlike the taxi, this vehicle had a proper tailgate lift that made getting in and out so much easier, as well as a nice high roof and a means of locking the wheelchair to the floor. So I was able to travel home with the back of the wheelchair reclined slightly and feeling a lot more safe and secure. By the time we got back home the ambulance crew were already waiting for us and within a short space of time I was back in the safety of my study.

In the stretcher chair and ready for carrying back upstairs! With Darren and Andy, the friendly ambulance men whose job it was to get me safely up and down the stairs.

So that was it, my afternoon out was over in a flash. I’m sorry that there aren’t more pictures to share. The abysmal weather prevented us from going outside and making use of the grounds, and the inside of the hotel was rather dark (although some might say atmospheric), so my camera struggled to produce good pictures when set to ‘auto everything’ which is the only way that other people will use it.

My thanks to everyone who came along this afternoon. I hope you all enjoyed yourselves. For those who couldn’t make it, please see me after class! Special thanks go to Debbie, Ann and my aunt Joan, who organised the afternoon. Also a special thanks goes to Alli and her father for saving the day! And lastly, thank you Francesca for dropping in this afternoon, I was really happy to see you again.

Mark

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Tuesday, August 24th 2010

50!

Today I celebrate having completed 50 orbits of the sun! smile_party

According to a NASA website the Earth travels about 940 million kilometres a year as it orbits around its parent star. That’s about 584 million miles a year. So in my lifetime I have travelled 47 billion kilometres or 29.2 billion miles. And that doesn’t even include the distance travelled as our solar system moves through the Milky Way Galaxy, or as our galaxy moves through the Universe. Phew! No wonder I feel tired. And yet despite all that travelling I haven’t actually worn out that many pairs of shoes smile_regular.

It’s quite a sobering thought to think that I have now lived for half a century! But the thing is I don’t actually feel anywhere near fifty and yet here I am, a fully paid-up member of the ‘village elder’ club smile_regular! To think, people will now come travelling from far and wide to hear me dish out little nuggets of wisdom like ‘don’t do it’, ‘I wouldn’t if I were you’, ‘it’s not worth it’, ‘think of the consequences’. Or maybe not!

The fact that I was 50 today was kind of hard to ignore as I was wheeled out of my bedroom this morning and along the landing into my study. The route was emblazoned with banners, strings of multicoloured ’50’ numerals and brightly coloured helium balloons! Debbie had been busy last night after I went to bed! I didn’t have the heart to tell them that I was actually 40! Well, 50 is the new 40 as far as I am concerned, he he.

The celebrations kicked off around 11 AM with a surprise visit from Poppy, Ann’s delightful little granddaughter, who came bearing gifts: a very large helium balloon and a delicious looking birthday cake (and I can vouch for the fact that it was delicious because I had several pieces today)! Shortly afterwards we were joined by my aunt and uncle, who I spent an enjoyable morning with opening cards and eating birthday cake. And that is how the day went really with people dropping in during the afternoon and evening with cards and presents… and more balloons. To be honest it was the opportunity to chat and socialise and have company that I enjoyed the most. So thank you to Jim and Val, my friends from Basingstoke NeighbourCare, to my brother Jason and his wife Chery, and to my friendly next door neighbour and his family, all of whom I spent some time with today. And thank you Chris, for the phone call from Scotland! Wish you could have been here today to share it with me.

With Poppy and Ann

With my uncle Alan and aunt Joan

Balloons for sale! Step right up... Anyone you want! πŸ™‚ Anyone would think I've turned 50!

Just a man and his meerkat. One of the presents I received.

With my brother Jason and his wife Chery

With Alli

Because of my love of wildlife, Meerkats being a particular favourite (long before a certain comparison website’s TV adverts), there appeared to be a definite theme running through my presents this year with a Meerkat drinking mug, coasters, and a beautiful photograph printed on fabric that will take pride of place on one of the walls in my extension soon. So thank you to everyone that has been a part of today. It was all very much appreciated.

And finally… one of the more interesting things I received for my birthday was a high-powered microscope smile_wink! At last I would be to keep an eye on those little rascals that are causing me so many problems lately. It even has a built in picture taking mode so I’ve been able to take a few snaps already to see what they’ve been up to. Take a look yourself…

Captured on film and magnified an incredible x20,000. This sub-microscopic shot shows a rare glimpse of Mr Neurone and his fellow neuronettes celebrating my 50th the only way they know how! πŸ™‚

This one amazed even me and I still haven't yet worked out how they managed to achieve it! In a tip of the hat and gaining inspiration from air forces the world over, my naughty little neuronettes have arranged themselves in 'missing muscle formation'. I had to use cutting edge special lighting techniques (i.e. a blue Quality Street wrapper pulled tight across a penlight torch) on my ultra expensive state-of-the-art Fisher-Price microscope to show up this delicate arrangement! πŸ™‚

Mark

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Wednesday, July 28th 2010

Mid week catch up

My days here at the hospice are all starting to blur into one. A sizeable portion of each day is taken up with my care and various meetings as we finalise all the things that need to be done before going home next week. On Monday for instance, Jane (my OT with Adult Services), dropped by with Richard (from Remap) to discuss ways in which I could take a drink during my hours alone in the afternoons. What they’ve come up with is some kind of arm that attaches to my wheelchair that will hold a sports bottle of about half a litre. The arm will be positioned in such a way that it will be within easy reach of my head as moving my body forward in the wheelchair is no longer viable.

Another concern I had about returning home is how easy or difficult it would be to have my hair washed now that I’m no longer able to use the bath (for safety reasons). Jane brought with her some catalogues of products for the disabled and has identified something which to my mind looks like a scaled-down children’s paddling pool which is placed behind the head when you are lying on the bed. So fingers crossed it looks like I’ll still be able to use my bath toys, only trouble is I won’t be able to see them!

Following on straight after this meeting was a get-together with Sue from In Touch who has notified me that building work on my extension is set to commence next Monday. So fingers crossed there aren’t any last-minute changes.

I’ve been having some real fun and games with my computer again. I recently discovered that something at the hardware level has either been replaced or tampered with because all my DRM protected ebooks from Amazon and Waterstones could no longer be opened. I had to reregister my laptop computer with both Amazon and Adobe and in the case of Amazon had to re-download all my books again. It didn’t cost me any money just valuable time. Oh for a simple life! Oh yes, on top of that I’m having real problems with Internet Explorer which is having difficulty loading some pages and flatly refusing others. Confusingly though when I downloaded a portable version of Firefox I was able to view any webpage I wanted.

This afternoon, Bernie (the IT manager here at the hospice), programmed my Possum environmental control system with useful phone numbers. Recently one of their engineers had been to my house to set up a hands-free phone which is connected to the Possum. So now when I go home I will once again be able to make and receive phone calls both in my study and in bed.

I’ll close out with a photo taken today in the company of three lovely ladies who have done a great deal for me in my time here at St Michael’s. From left to right they are physiotherapists Jean and Helen, and occupational therapist Caroline.

In the company of three lovely ladies: Jean and Helen, and Caroline

Mark

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Friday, July 23rd 2010

Unwelcome suggestions

There was another case conference this morning in which various healthcare professionals from both inside and outside of the hospice gathered together to discuss outstanding actions necessary before I could be safely discharged. After they’d had their meeting I was called in to join them in the conservatory where they outlined their concerns over my going home and being trapped upstairs for a further 3 to 4 months. Because I have reached the next level of the disease with early symptoms of respiratory problems starting to surface, they were asking me if it would be better to spend the time living downstairs so that I could access the outside world. This sounds a great idea however there are a number of problems with it. Firstly I would have to clear most of the furniture out of the living and dining room and put it into storage. Next I would have to somehow re-populate this room with a bed, a gantry hoist, the commode/shower chair, my wheelchair and a desk to work at. The room would end up looking very cluttered. But even if I was prepared to accept all this it still wouldn’t work because of the noise and disruptions from the building work due to start next week. It would be impossible to operate my computer using voice recognition with all the background noise. I know that full well from my past experience. So it would effectively shut me down for a few months which I couldn’t tolerate. I just don’t see how I could live, sleep and work in a room that is having holes knocked in the walls with workmen moving about.

The second and more radical suggestion was that I cancel the extension altogether and just move in downstairs. So effectively it would mean living out the remainder of my days, however many that may be, in a single room and never going near a bathroom again! Why would they suggest this? I suspect it has something to do with the amount of life expectancy I have left and wanting to make the best of that time. Perhaps also there are people who feel that I just wouldn’t get the benefit of having an extension this late in the disease progression?

I was aware of course that everyone at the meeting had my best interests at heart and didn’t want to see me trapped in my own house, but I have spent well over a year trying to get an extension built. It’s caused me endless stress and worry, I’ve written to my MP at Westminster, got my local councillor involved, and called on the help of some of my healthcare professionals. In addition I’ve spent quite a large sum of my own money on a stairlift that was going to be deducted from my contribution to the Disabled Facilities Grant. On top of all this I had to sign to say that if I cancelled the project I would have to meet all the costs up to that point myself. There was never going to be a U-turn on my part regarding this decision. Come what may I intend to get this extension built if it’s the last thing I do (and probably will be smile_regularΒ ).

On a more cheerful note I’ve been able to spend the second afternoon in a row in the company of my brother, Chris, who has driven down from Scotland to visit family. It’s also given me the opportunity to spend a little time with my niece and nephew, Emma and Rowan. It’s been a year since we last got together and although we keep in touch by phone it just doesn’t make up for seeing each other. So thanks for an enjoyable few hours, Chris. I wish we could see each other more often. Here’s a few photos from our get-togethers. More to follow shortly. Enjoy!

With my niece and nephew, Emma and Rowan, in the hospice garden

With my brother, Chris, in the hospice garden

With my niece and nephew, Emma and Rowan, in the hospice garden

With my brother, Chris, in the hospice garden

Mark

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