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.


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High Summer (August) – part 2

Calendar entries highlighted in yellow

10th August 2009 – Going up in the world

Roger the craftsperson from Hampshire Adult Services called round this afternoon to take a look at my sofa to see what could be done to raise it up further. It’s already resting on 3 inch extension legs fitted earlier in the year which at the time made such a difference. Unfortunately the disease has moved on since then and it’s becoming borderline whether I can get up by myself from that height. Roger has been able to fashion a couple of timber struts with some mounting blocks to which the extension legs are now attached to raise the sofa up to the required height. He’s actually done a good job and the whole thing looks quite presentable. It’s certainly much easier to get up when I’m sitting on it. A simple but very effective adaptation.

12th August 2009 – Ann to the rescue – again!

My care agency made an ‘administrative error’ (they’re not doing too well lately) which resulted in a mix up with carers and no one being assigned to do my evening call. It only came to light when I grew tired of waiting for someone to turn up and had to phone up the out of hours help desk. After a series of frantic phone calls my ever reliable Ann rushed round and cooked a meal, made sure I had plenty of drinks to hand and had my medication. Thank you once again, Ann, especially for coming out so late tonight. Where would I be without you?

17th August 2009 – Stumbling along

It’s been one of those days! I had another problem with my care agency and was left without a lunchtime call and consequently nothing to eat. My regular lunchtime carer had notified the agency at 9am to say she’d hurt herself and couldn’t make it, but it wasn’t until 2pm that the agency contacted me to say they were trying to get hold of someone still out on the road. By this time though it was becoming too late as there would not be enough time for someone to arrive, prepare food and for me to eat it before being picked up for a doctor’s appointment so I had to cancel it. Fortunately, Jim and Val, my lovely friends from Neighbour Care, made me a hot drink when we got back from the surgery. Oh, and my appointment? Total waste of time. After sitting in the waiting room for ten or so minutes we were told that my doctor had been called out on an emergency and we would have to re-book. So back I go on Wednesday.

18th August 2009 – Thank you again, Ann

Where would I be without Ann lately? Not only did she do her usual morning personal care/breakfast/housework session but also got the care agency out of trouble by stepping in at lunchtime and again in the evening. I’m really starting to be concerned about the intermittent nature of my service lately. I have a care review coming up soon so I’ll try and get some answers then.

19th August 2009 – 45 / Presents from AbilityNet

It was back to the doctor’s surgery this afternoon, courtesy of Jim & Val, for a second attempt at my monthly appointment with my GP. I was finally able to see what the results of last month’s lung function test were and part of me wished I hadn’t. Unfortunately, although perhaps not unsurprisingly, there has been further deterioration. My FVC (Forced Vital Capacity) now stands at 45% compared to 52% back in March. It would certainly explain why I’m feeling that little bit more breathless when I physically exert myself by doing no more than climbing the stairs. And to think back in 2007 shortly before my diagnosis I was above average at 109%. So in just under two years I have lost slightly more than 60% of my breathing ability. Crikey! And yet despite what the figures say I am still able to get a good night’s rest and not wake up constantly through the night or in the morning with bad headaches. I guess it affects everyone different but common sense tells me that sooner or later my good luck is going to run out and I will need help breathing.

My brother, Jason, called round this evening to setup some of the equipment that I had received yesterday from AbilityNet. This included a foot mouse and switches, gooseneck microphone, and the Dragon Naturally Speaking speech recognition software. All of this was plugged in and installed on my laptop computer. I’ve also received a wireless foot mouse and switches for the media centre computer connected to the TV although we did not have the time to set these up this evening. After my evening carer and brother had left I spent a little bit of time playing around with my new toys. The foot switches, which replicate the actions of the left and right mouse buttons, are going to make life a lot easier for me when performing click and drag operations when photo editing. The speech recognition software also looks promising, and certainly more accurate than the one bundled with Vista. In fact today’s whole blog entry has been typed ‘hands-free’ simply by dictating into my new noise cancelling microphone. I’ve not even run through the tutorials yet but have still managed to be productive with the software. I’ll try and put together a separate blog entry on speech recognition at a later date once I’ve fully understood how the software works, which hopefully will prove useful to others in a similar situation as myself.


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High Summer (August) – part 1

Calendar entries highlighted in yellow

1st August 2009 – Some normality returns.

Francesca is back after a two week absence and instantly brought a smile to my face with her bright and cheerful manner. For the last week I’d been cared for by stand-ins so it was really nice to see a familiar face again.

It’s my youngest brother’s birthday soon so Francesca took me shopping for gift wrap and a card. When we got back she creatively wrapped up the presents and wrote out the greetings whilst I looked on helplessly but at the same time gratefully. It’s so frustrating now not to be able to even write a few words in a card. I’m so lucky to have people like Ann & Francesca caring for me. They really do go out of their way to help me. I’d be lost without them.

3rd August 2009 – Ejector seats!

Ann was kind enough to take me to the hairdressers this morning – yes, I know it needed cutting! Had the same problem getting up from the chair though as I’m finding everywhere these days, i.e. I needed help. Afterwards we called in to the Hearing & Mobility shop to take a look at riser/recliner chairs. I was able to try a couple out and very comfortable they were too and much easier to get up from when tilted forward – however, my hands are so weak now that I couldn’t operate either the toggle switch or push button remote controls. And like the stair lift, the switches require constant pressure otherwise the chair stops moving. I just can’t maintain pressure with my fingers anymore. So it looks like an ‘off the shelf’ product is going to be unsuitable and would need some kind of adaptation. Another concern would be if I lost my grip on the corded remote control. I have so little use over my arms that I could end up stuck in the chair unable to reach the remote.

4th August 2009 – A visit from CommuniCare

Heidi from CommuniCare called round to talk about and give me a demo of a call alarm system – basically an emergency lifeline hooked into a response centre. I’m definitely at the stage where I need help getting up from the floor should I fall over so this is all a bit overdue. The system comprises a box of electronics with an in-built speaker plugged into the phone line. You then have the option of either wearing a pendant alarm around your neck, which is of no use in my particular circumstance as I cannot lift my arms, or you can wear it on a strap placed around your wrist like a watch, which is what I tried. First problem I encountered even when just sitting on the sofa was trying to get my semi-paralysed right arm into a position where I could reach my left wrist. Talk about struggle! Second problem was that I didn’t have enough strength in my hand to push the button. Yes it’s that same problem I encountered when looking at stair lifts and riser/recliner chairs. I just can’t operate anything! Next option was to place the switch inside a rather large plastic U shaped frame and strap the whole thing to my wrist. It certainly made it easier to press the button but was huge and clumsy looking on my wrist and liable to catch on things. Because I currently don’t have a night call at the moment I would have to wear it in bed where it could easily be activated by mistake as I wouldn’t be able to remove the strap myself. Another problem is when it gets colder and I return to long sleeved clothes. With that large frame on my wrist I would not be able to get my arm out of my sleeve. Another option we looked at was a fall alarm which again proved unsuitable because it self-activates as soon as it detects you are in a horizontal position – not so good when I’m lying in bed! So at the moment I’ve had to hold fire on this idea until I can get further advice. MND sure makes things difficult.

6th August 2009 – A little bit of good news

Had some wonderful news today from Becci, a colleague from my days at Eli Lilly. Shortly before leaving last year I made a request that the Motor Neurone Disease Association be put forward as the next Eli Lilly (Basingstoke) Charity of the Year. Well it looks like my wish has been granted although funding for charities has altered so that a different one is appointed each month. The MNDA were Lilly’s Charity of the Month in June. So a big thank you from me to everyone who contributed. I’d also like to say a special thank you to Becci who’s been working hard on behalf of the MNDA through a series of Ladies Night fundraising events. Well done, Becci, and good luck with the next one in October!

7th August 2009 – A visit to the Orthotic Centre / Trouble with a carer

I spent an hour up at the Basingstoke hospital today discussing the problems I’m getting with keeping my fingers straight when trying to type for long periods. I’d already been trialling a finger splint that Chris, my OT had supplied, but she had put in a referral for me to see the folks in the Orthotics Centre in the hope that they might be able to come up with something better. As it turned out it was all a bit of a waste of time. The referral (which wasn’t signed off by my regular GP as she’s on holiday) was very vague. Consequently the young woman I saw was unsure of what she was being asked. To make matters worse she had little experience of finger splints and specialised more in feet. We ended up looking through what appeared like the same catalogue as the one my OT showed me. All she could suggest was a tubular splint designed to just slip over the finger. She’s going to order one for me to try.

I had a disagreement with one of my new carers this evening which ended in my asking her to leave my house…and she won’t be coming back either! She’d only been in my house a few minutes when she confronted me with her concerns about my having a guest present in the house the previous evening when she was cooking my dinner. She said (in a stern voice) how it made her feel uncomfortable and that she felt like a maid! I’ve no idea why this should be as my guest immediately introduced herself in her usual friendly manner and in no way encroached on the carer’s duties but sat quietly out of the way. In fact it was the carer who cold-shouldered her much to my embarrassment. Having a carer making me feel bad about having guests in my own home was bad enough, but when I asked her how she would have felt if my brother and his wife had turned up and was told “well I haven’t come across that scenario yet” it really angered me. The cheek of it! I’ll be damned if I’m going to be made to feel uncomfortable having family or friends in my own home just because a carer is present. Other carers had managed just fine. There’d been a few other things I’d not been happy about with her so I took the opportunity to raise my concerns. In for a penny… Oh well back to square one. All I can say is come back Alison, please – I really need you!

I would like to say a big thank you to Ann, one of my remaining long-term carers, who rushed round to my house to make sure I had a dinner and received my medication. Thank goodness I have some really loyal people supporting me who genuinely care.


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The month of July – part 2

Calendar entries highlighted in yellow

15th July 2009 – Measuring up

Cheryl (the council’s grant officer) and a group of folks from In Touch (the people who will be project managing the adaptations to the home), called this morning to assess the suitability of building an extension at the back of the house that would be large enough for a bedroom and a wet room. A potential problem is that I have a drain cover in the back garden just off the patio, and judging from how deep it is the feeling was that it may not be possible to get a build-over permit or even be able to build within 3 metres. Were that to be the case then any extension would be a non-starter. I felt rather deflated at hearing this news as all my hopes rested on being able to live out the remainder of my life in my own home.

Another option that is going to be investigated is building to the side of the house. My home is on a corner so my front garden extends along the side of the house. It’s not a particularly wide piece of ground and any extension would practically be up against the pavement. However it is quite long so may still be useable. They are going to check to see if there are any planning issues.

Towards the end of the day I got an email from Cheryl to say that the drain in the back garden is not a public sewer and can therefore be built on, but it would be difficult (and presumably expensive). Just waiting now on the outcome of the proposal to build to the side.

18th July 2009 – Helping hands

I was really grateful to Francesca for spending a few extra hours with me today and being my hands. I have an old desktop computer (and an even older monitor) that has reached the end of its life (at least for me) and Francesca, under my supervision, has been removing data, wiping external drives, and reverting the system to a previous much earlier state thanks to a hard disk image I had made, so that I could pass the system over to someone else. I tend to just use my laptop computer these days as I find using the trackpad a much easier way to move the cursor as it only requires me to push a finger around. Trying to wrap my hand around a mouse and guide it with my weak arms is too tiresome. Another useful feature of a laptop computer is the built in battery backup – very useful when carers suddenly pull the plug out of the wall socket so they can use the vacuum cleaner!

I also owe Francesca a big thanks for taking me over to Black Dam to watch the birds. It felt good to get out after being cooped up in the house so long.

20th July 2009 – Back to see the Neurologist

Jim and Val (from (NeighbourCare) picked me up this morning and took me up to the hospital for my 4-monthly visit to see the neurologist. Unlike last time when I had Alison and Francesca to keep me company and offer support, I was on my own this time round. I was anxious to find out what the results of my recent lung function test were but was disappointed when he told me that he had not been able to locate them! What a letdown. I’ll wait a week or so and try contacting my GP to see if the results have been made available. Apart from that not too much to report. We talked a little about my declining having a PEG fitted at this time. He reminded me of the window of safety that is getting smaller and suggested that I discuss it further the next time I visit the Southampton Respiratory Centre (September). He also reviewed the results of my recent liver function blood test and concluded that because the results appeared stable there should be no need to repeat the test for another twelve months. I also had the usual round of resistance tests in which I had to get a muscle group to move against his hand. This just highlighted how weak my legs and neck are getting although my mouth muscles still appear strong.

21st July 2009 – Finger splinting

Had a visit from Chris, one of my two OT’s, who came bearing gifts – a neat little finger splint for me to try for when I use the computer. I just wanted something to support my middle finger so that it doesn’t curl inwards. The other requirement is that I can at least remove it myself and ideally put it back on myself. I’ll be trialling it over the coming weeks but based on the time I had it fitted this afternoon it seems promising. I suppose ultimately it’s just going to be a short term solution until I can move to hands free computing solutions.

22nd July 2009 – A day with family

I’ve just had a very enjoyable day spent down in the New Forest in the company of my brother, Chris, and his partner, Anne, who have driven down from Scotland for a few days. Unfortunately because of distance and my inability to go anywhere unaided I’m not able to visit them, and so sadly we don’t get to see each other very often which means making the most of it when we do. Today we decided to revisit the National Motor Museum down at Beaulieu, a place I had not been back to in well over twenty years. Accompany us were my niece and nephew, Emma & Rowan, bringing our little party to five and filling up my brother’s car nicely.

Today’s excursion was the first time I’d used my wheelchair for anything more than a trip into town or getting some fresh air around the housing estate. I was curious to see how it (and me) would fare over a whole afternoon. The trip there was uneventful and my brother seemed to take great delight in reeling off information churned out by his new SatNav – the novelty hasn’t worn off yet! Getting the car parked presented no problems and although the disabled car park was full we were able to use the overflow which wasn’t much further along. We encountered our first taste of how the museum treats disabled people when we entered the admissions building and were ushered over to a separate desk to pay, where I got in at a reduced rate and my brother (acting as my carer) got in free.

After some group photos around a bright red 4×4 marking the entrance to the main museum building, we headed off towards Palace House. And it was here that we soon discovered that trying to push a wheelchair over gravel is not the easiest of things. I got shook to bits. Inside the Palace House I was restricted to the downstairs rooms, which meant The Entrance Hall, The Dining Hall, The Lower Drawing Room, and The Victorian Kitchen. Didn’t fancy taking my chances on the grand staircase and it wasn’t the sort of property to have a stairlift, hehe. Nevertheless I was able to step out of the wheelchair and walk around the rooms for a while. Outside it was more photos only this time I was determined to stand up for them and afterwards to walk back over the gravel until we reached tarmac where I once again sat back in my chair, grateful for the rest.

But of course Beaulieu’s main attraction are its cars and the main museum which apparently is home to something like 250 vehicles, including Del Boy’s Reliant, Mr Bean’s Mini and the DeLorean from Back to the Future. Unfortunately the flux capacitor was missing, dashing my hopes of ‘borrowing’ it and zipping off to the future to find a cure for MND :-). There are also various mini exhibits such as the James Bond Experience – apparently Bond’s car from Die Another Day was on display but as it had its invisibility cloak switched on I’ll have to take their word for that :-). I must say that I was very impressed with how courteous and keen to help all the staff were, from stopping the ‘time capsules’ on the Wheels exhibit so that I could board safely, to taking me in through a side entrance and giving me preferential viewing at the latest Top Gear exhibit. Definitely a disabled friendly tourist attraction.

I had been rather apprehensive about the weather as we’d had a few days of showers including rather a lot of the wet stuff yesterday afternoon, but luck seemed to be on our side and it remained quite pleasant throughout most of the day. In fact it only clouded over, grew dull and tried to rain as we were leaving.

I’d like to say a big thanks to everyone who came along and made the day so enjoyable, and an even bigger thank you to my brother who did a sterling job acting as my carer, wheelchair attendant, helping with the disabled loo, and even feeding me. Thank you so much, Chris. One thing I’ve learnt from today is that it’s best to go out with a group. That way there are more people to lend a hand, and it’s more fun too!

Here’s a few shots to be going on with. I’ll upload a separate gallery shortly.

Outside the National Motor Museum with my brother, niece & nephew.

Outside the National Motor Museum with my brother, niece & nephew.

Outside the National Motor Museum with my brother and his partner.

Outside Palace House. (photo courtesy of Anne)

Outside Palace House with my niece & nephew. (photo courtesy of Anne)

Outside Palace House with my brother. (photo courtesy of Rowan)

Outside Palace House…and still standing!

Inside the National Motor Museum. Me and the ‘ol jalopy. It never quite ran the same after I had it converted to unleaded! 🙂 (photo courtesy of Anne)

Inside the National Motor Museum. Me and Rodders! 🙂

Inside the National Motor Museum. This is what I got with my mobility allowance. Not bad eh? Just kidding...it’s Francesca’s really. Carer’s get paid a bit more than average around these parts! Now you know why I like going out in her car! 🙂 (photo courtesy of Rowan)

25th July 2009 – Unfamiliar faces / Blog woes

Starting today and for the next week I’ll be surrounded by different carers as both my remaining main carers are unavailable. Considering the high level of personal care I now require this is going to be very disruptive. So much for my hopes at the beginning of the year for a robust care package. Lately with all the different people coming and going it feels like I’ve gone back to last December. I just can’t feel settled.

If anybody lately has been trying to access the hi-res versions of photos shown in my slide show galleries without success…I am aware of it. I discovered the problem a few days ago. It would seem that all the photos stored in the various folders have mysteriously gone missing and I know for sure that I haven’t deleted them. In fact I don’t even know of a way of doing a mass delete like that. But trying to access them now just results in an error message. At present I’m in the process of exchanging multiple emails with Microsoft’s technical support and getting passed from one department to another. Stay tuned…

Disappearing photos were not the only problem I uncovered. I also noticed that images I embed in blog articles which are normally stored in a special folder called ‘blog images’ have in fact been scattered across multiple copies of this folder, some with just a single picture in whilst others contain dozens. Why worry, you might ask? Well it becomes a problem if you use custom lists like I do to display which photo galleries to display and in which order as there is a system limitation on the number of folders. Fortunately I was able to work out a way of having just one ‘blog images’ folder, despite being told by technical support that they were aware of the problem but I would have to leave the folders as they were. I felt quite pleased with myself at still being able to work out problems like this myself and finding something to engage the mind, as well as learning about a very useful feature in my blog publishing software that I’d not used before.

28th July 2009 – Legal stuff / Almost…

I had a solicitor call round this afternoon to talk me through setting up a Will. To be honest this is something I’ve been meaning to do for goodness knows how many years, but like everyone else I kept putting it off. Only now at the eleventh hour do I finally do something about it. That is so typically me, haha. I was thinking about setting up a lasting power of attorney as well so that my brothers could represent me financially, but my wallet went into shock when I was told it would cost around £1000! And that’s on top of the £200 for the Will.

Had a bit of a frightening experience late this evening. I went to get up from the sofa when my legs suddenly gave way and I found myself on the carpet on my knees. In that moment of fear I had visions of being trapped on the floor of my living room until morning when my carer was due in. I tried to keep calm and stay upright as I knew that if I toppled over completely I would not have the strength to get up. I inched my way to the edge of the sofa and in what must have looked a clumsy manoeuvre managed somehow to catapult myself in a sideways motion back onto the sofa. After catching my breath I was able to wriggle myself into an upright sitting position and there I stayed for some time until my confidence sufficiently returned to allow me to attempt standing up again. I breathed a big sigh of relief once I was standing up…but it was the last time I sat on the sofa this evening.

30th July 2009 – Asking for a raise / Blog recovery

After Tuesday night’s bit of excitement I had Marion, my OT, call round this afternoon to look at the feasibility of increasing the height of the sofa still further. It’s currently sitting on 3 inch leg extensions but I’d like it raised as much again to take the stress off my upper leg muscles. Unfortunately the longest ‘off the shelf’ leg extensions the council have are 4 inch. It’s a pity they didn’t fit these to start with! Marion is going to arrange for Roger, the craftsperson, to call and discuss it and see what can be done. Another option she mentioned is having a riser/recliner chair which are supplied by the MND Association. The only problem with that is finding somewhere to put it as my living room area is not very big.

I got an email from Microsoft to say that the problems I’d been experiencing with all my hi-res photos going missing was due to a problem with server upgrades at their end and had now been rectified. Phew!

31st July 2009 – A meeting with In Touch

Sue from In Touch called this afternoon to discuss paperwork for the Disabled Facilities Grant and to show me some preliminary designs for the proposed extension. One design shows a single story extension to the side of the house. Because that piece of land is rather narrow it would mean everything would need to be stretched out in a line. I’m not overly comfortable with this design as the outside wall would be right up against the pavement and next to the road. Also the door into the extension would seriously affect the layout of the living room. More preferable is the second design built off the back of the house which would make it easier to move between bathroom/bedroom/dining area and offers a better layout in the extension itself. A lot of it will hinge on the meeting In Touch are having next week with the planners to see if there would be any serious objections to construction on either site.


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