High Summer (August) – part 3

Calendar entries highlighted in yellow

23rd August 2009 – A grand day out

I had a really good day out. Me and my motor neurones spent a day up in London by the River Thames. I took them down to the Embankment and bought them an ice cream each and then left them to it whilst I went off for a walk to get some peace and quiet from their constant bickering! I tell ya, one day those flippin things will be the death of me, you mark my words! 🙂

On a slightly more serious note I had a wonderful day out up in the capital in the company of my brother Jason and his wife Chery, and my friend and carer, Francesca. In the run-up to my birthday tomorrow we thought we’d start the celebrations early and make the most of the good weather. Today was going to be a real test for me as it would be the first time I had made use of public transport with my wheelchair and I was a little apprehensive, wondering what sort of problems we would encounter along the way. We got off to a good start with Basingstoke railway station well prepared for disabled travellers. No sooner had we presented our tickets when we were asked if we would require a ramp and help on to the train. Our railway station also has lifts up to the platforms which I must admit I had never noticed before so access was easy. South West trains also have doors which are clearly labelled with the familiar disabled logo. A platform attendant was on hand to attach the ramp to the carriage and to ensure that we boarded safely. Just before leaving we were asked what our destination was so that they could ring ahead to make sure that someone was on hand to help us get off the train. Inside the carriage there is an area clearly laid out for wheelchair users and some adjacent seats reserved for disabled passengers, much like a bus really. Our train was packed with people taking advantage of the Summer Madness promotion with cheap travel up to London, so I was grateful that I had my wheelchair to sit in. Unfortunately my travelling companions had to stand nearly the whole way.

Once at Waterloo we headed off towards the London Eye although not by the usual ‘disabled-unfriendly’ route with the steep stairs adjacent to the Shell building. We had to leave the station by the main exit and work our way along the footpaths. Once at County Hall there was someone on hand to help us get our tickets and give as priority access. Unfortunately priority access doesn’t mean skipping the entire queue, merely some of it as I had worked out by seeing the number of wheelchair users scattered through the queue. Boarding the capsule was made easy by attendants putting a ramp in place and pausing the wheel. With a clear blue sky we had a fantastic view across London and I thoroughly enjoyed the ride. Oh yes forgot to mention, they’ve added something since the last time I visited, a 4D London Eye Experience. Basically it’s a 3-D movie projected onto a large screen that promotes and sets the atmosphere for what is to come. Not particularly long but good fun. Just be prepared to get squirted by water!

From here we headed off to grab a bite to eat at the nearby McDonald’s. Unfortunately the entrance required navigating some steps and the only way to do this was for me to get out of the wheelchair and gingerly climb the steps with Francesca supporting my arm, all the while conscious of the people entering and leaving, and worried that I might get knocked and lose my balance (so easy these days). Once inside there was a lift for wheelchair users that took you to the below street level seating area which on a day like today was packed. With help I was able to transfer to a normal seat (no choice really as all the seats were fixed to the floor adjacent to the tables so I couldn’t squeeze in with the wheelchair even if I wanted to). I felt so weak and my arms were so tired I gratefully accepted Francesca’s offer to feed me. I just didn’t care what nearby people thought.

The London Aquarium was our next port of call. Once again we were treated with priority service and gained concession rates with Francesca being treated as my carer. The aquarium is on several levels but it’s all disabled-friendly with lifts for easy access. Highlight of course must be the multilevel shark tank which you can view from different viewpoints as you move around the floors. At certain times you can see divers going into the tank to feed the sharks. Interestingly it never seems to be the same diver twice which perhaps explains the notice I saw by the admissions desk ‘divers wanted urgently, start immediately’. All I’m saying is the sharks look very healthy 🙂

Hard to believe but already the time was flying by (as it always seems to do when I’m in London). With the sun casting an early evening golden light across the Thames we took a cruise up to Tower Bridge. I would have liked to have taken the extended trip to Greenwich but time was pressing. Boarding the riverboat was less refined than boarding the train i.e. a couple of burly deckhands literally grabbed hold of the wheelchair and lifted it and me on to the boat! Even so we had to let the first boat go as the height of the boat’s deck was not level with the floating dock (by a considerable margin) and was deemed too unsafe to board. What they also failed to tell us was that the boat we were on would be taken out of service for the evening once it arrived at Tower Bridge and that we would need to wait for almost an hour for a return cruise. Still, it gave us a chance to walk over to the Tower of London and get a closer view of Tower Bridge. The return cruise docked on the north bank which meant having to get out of the wheelchair again and climbing the steep stairs up to Westminster Bridge. I was grateful to have Francesca and Chery at my side offering reassurance I was glad when I had reached the top and able to sit back in my wheelchair again.

It had been a really enjoyable day out even though it often felt like somebody had pressed the fast forward button and hours were passing like minutes (we never achieved everything we set out to do). As with my day out at Beaulieu the lesson to be learned I think is the more people who come with you the merrier. Having a few extra pairs of hands spread the workload, particularly when it came to pushing me. I’d like to thank everybody who came and made it such a wonderful day and for taking such good care of me, in particular to Francesca who conquered her fear of heights (at least enough to board the wheel with us) and rocking boats, and kept an extra careful eye on me. By the time I arrived home I was feeling very low on energy and because I had sat in a wheelchair all day my legs felt especially weak, so with my brother on hand to make sure I didn’t run into any difficulties I went straight to bed, grateful for the rest. The only disappointment of today? That Francesca had not lived up to her promise of giving me a piggyback around London or wearing me like Jar Jar Binks backpack! 🙂

Here’s a few shots to begin with. I’ll upload a separate gallery shortly.

My brother Jason on the London Eye.

With Francesca on the London Eye.

My brother and his wife Chery on the London Eye.

Francesca and I by the London Eye

With my brother Jason at the London Eye

Brothers! At the London Eye

Chery and I waiting for our Thames cruise. (photo courtesy of Chery)

With Francesca looking towards Tower Bridge.

Oh yes, one last thing or perhaps I should say first thing. Francesca had been extra busy this morning when she arrived to do my care but I wasn’t to find out until I had been washed, dressed and brought downstairs. The dining area had been decked out with balloons and a birthday boy banner… and some presents to open tomorrow. What a nice gesture. I’m so lucky to have such a friend and carer.

24th August 2009 – It’s my birthday!

I’m 49 today! After breakfast Ann and I had a card and present opening session. Well that is to say I sat patiently in my swivel chair whilst Ann opened the cards and held them up for me to read. Thank you to everyone who sent one and also thanks to all of you folks who sent me electronic greetings – a pleasant surprise when switching on my computer this morning. Oh, and a special thank you to Francesca who sent me a hilarious animated e-card, a sample of which you can see below.

A frame grab from the animated eCard that Francesca sent me

I phoned up Liftech this morning to chase up my stair lift as it has been a good two months since the order was placed and at the time I was given a 4 to 6 week delivery quote. I’ve been told that they are still waiting on Holland (where they are manufactured) and that are going to chase them up again. With my legs growing ever weaker I’m really starting to become concerned about my ability to use the stairs for much longer and it’s starting to feel like a race against time. I did explain my situation to them in the hope that it might help expedite things.

By strange coincidence I received a phone call this morning from an electrician working for Liftech who was in the area. ‘Would it be okay if I call round right now and wire up the spur in readiness for when the stairlift arrives?’ He asked. Absolutely, I said, glad that things were starting to move along at last. Within the hour he had arrived, been up into the loft and run a power lead through the ceiling along the edge of the door frame, and fixed a spur by the skirting board. Smashing, now all we need is the stairlift!

To celebrate my birthday we had a meal out at the Longbridge Mill where my closest family and friends gathered for the evening. It was so lovely to see everyone having an enjoyable time together and for once not having to eat by myself. I’d like to thank everybody who came along and made the evening such a joy. I hope you all enjoyed it as much as I did. Special thanks to Francesca for helping feed me and to Chery for supplying the delicious birthday cake. Not any cake mind you, an M&S cake!

Here’s a few shots from the happy evening. More to come.

Here she is at last…captured on film! It’s Ann, my lovely, friendly and devoted carer.

With my two lovely, devoted carers…and good friends!

With my two lovely, devoted carers…and good friends!

With the lovely Francesca!

With my Aunt Joan & Uncle Alan and Cousin Suzanne.

 25th August 2009 – Care package review

I had a meeting with Rachel, my social care manager, to discuss the latest situation with my care package. Over the past few months a few issues had surfaced that were causing concern and needed action. The most pressing was the inconsistency and variability of the evening calls that had sprung up. The agency were struggling to find suitable carers, or indeed carers with sufficient availability, and this coupled with hardly ever receiving a weekly care plan any more meant that I often had no idea who would turn up at my door or even when. Something that Rachel had proposed a little while ago was moving to a dual agency and it was supposed to be one of the topics of conversation for today. I was therefore a little surprised to be told that things have moved on a little since then and that the agency were basically saying that they could no longer provide consistency for the evening calls for the foreseeable future and that they were terminating that part of their contract which apparently they could do. However, after a conversation with them on the phone this afternoon they seem to have backpedalled a little bit on that and I’m now going to have a meeting with the Home Care manager later this week to discuss possible suitable carers and their availability. What this might mean unfortunately is an increased amount of carers which moves away from what I originally had wanted. If however we cannot find a solution I will be forced into dealing with two care agencies which is going to get even more complicated.

Another long-term gripe I have with the agency which I have highlighted on numerous occasions is the fact that my care plan is woefully out of date. It was written out when I first needed care back in October last year and has never been reviewed since. With a progressive disease like MND it should be reviewed and where necessary adjusted on a much more regular basis, say every three months, instead of the usual 12 monthly cycle which is fine if your disability or needs are static. My needs have changed considerably; for instance the care plan makes no mention whatsoever of all the personal care I now require each morning. Consequently whenever a new carer arrives at the house and looks in the care plan folder I feel obliged to apologise and tell them not to go by that and so I end up having to explain everything.

27th August 2009 – A meeting with the Home Care manager

Debbie, the Home Care manager for the care agency I’m with called round this afternoon primarily to rewrite the care plan but also to talk about available carers for my evenings. As I’ve previously mentioned my care plan bears little resemblance to the stage that I’m currently at so we sat down together and totally rewrote it. I went through it step-by-step explaining everything that happens from the moment the carer arrives in the morning through to leaving in the evening and breaking the tasks down into the three main calls. The document is going to be stored on their computer system with a three monthly review day as I requested. They are going to supply me with an electronic copy so that if anything changes I can review it against the document and notify the care agency to issue an updated care plan. We also talked at some length about the problems I’m facing with my evening calls. Debbie is going to go away and discuss with some of the carers I’ve highlighted what availability is and what they are prepared to commit to to ensure that I have consistency.

28th August 2009 – Seating trials / Editing with ease

Ann and I have been experimenting this morning with the perching stool I’ve had gathering dust in the main bedroom. This was something that Chris, one of my OT’s had brought round in the early days after the diagnosis, and which at the time I felt was premature as my legs showed no symptoms. I’d never been very keen on it and viewed it as a very basic model with its tubular metal armrests and back support offering no comfort. Now with my legs progressively weakening I’m having to look at all options to enable me to continue living as normally as possible. In recent months we’ve been using an old wooden chair for me to sit on in the bathroom whilst having my shave. However the seat height is only 17 inches and just recently I’ve started to need help standing up from it. The perching stool (which is height adjustable) raises the seat height a further 6 inches and makes it so much easier for me to stand up by myself. To overcome the tubular metal back support digging into my back we’ve wrapped a towel around it. So for now, problem solved. Something else were going to be looking at after discussion with my OT is getting another glideabout chair similar to the one I have in the dining room but with a higher seat height. The one I already have has a 20 inch seat height but apparently you can get 23 inch models to. The intention is to keep one upstairs as apparently it is the preferred choice for first floors when space doesn’t permit a wheelchair.

I must say that the foot mouse and switches I recently received from AbilityNet have made a world of difference to my ability to edit digital photos. It is so much easier now to use my left foot to activate one of the switches (which simulates the left mouse button) whilst using the fingers of my right hand to move across the trackpad. Thus I am now able to perform cropping actions with ease. For the last few days I’ve been busy preparing photos taken over my birthday ready for my blog. Without these new tools I would have struggled really badly. Thank goodness that there is technology out there that enables us to continue to do the things that we enjoy for a little longer.

Mark

Bookmark and Share

One Response to High Summer (August) – part 3

  1. jane c says:

    Hi Mark,

    Reading your comments about the care agency and the care package were a vivid reminder of exactly the same frustrations that Richard and I faced, so it seems to be a common problem with care agencies all over. Richard often had his calls changed or missed in exactly the same way you are finding and, unlike you, did not have the speech to be able to tell new or unfamiliar carers what to do. He used to have to resort to texting me to come home from work (using his computer and foot switches) and I even found him in tears on one occasion, which resulted in a huge showdown with the manager of the care agency!

    Richard’s MND specialist nurse was able to arrange a training session with his care agency to try and spread awareness of the speed with which MND progresses and enlighten carers on the need for an established care package with the same regular carers, ESPECIALLY for patients who can no longer verbally communicate their wishes. I must make it clear his carers were wonderful, it was only the agency and the organisation that was useless!!

    All gripes, aside, glad to see you had a wonderful day in London and that your birthday was a special occasion for you and your family.

    Jane

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: