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’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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