Transfers

Listen up! Today's subject is transfers. Anybody? Yes. No, not the little signs and designs used to decorate scale models. Yes. Sorry, no, not the wait for flight changes at international airports, either. Look, let's put it another way. How many times a day do you stand up, sit down, change seats or perch on the edge of a table? You don't know, do you? Why would you? You don't give it a second thought, it's just part of the daily round. It only becomes significant, acquiring a special title, when it becomes difficult and ultimately impossible.
Transfers, in my case, means how I get into and out of bed, or from one chair (wheeled or otherwise) to another, and using the loo! At present I am still just able to stand from the varible height bed, my powerchair and my riser/recliner chair in the sitting room. Every other situation requires assistance ranging from a light push to a hearty heave. I can still make a few tortuous steps with my walking frame but am conscious of how my muscular strength is progressively weakening and will desert me in the not too distant future.
There is now a ceiling hoist in the bedroom that will take me from bed to chair and vice versa. I was introduced to it last week, it's going to be fun!
Basically though, the future is staying where I'm put, indoors, and staying in the wheelchair everywhere else because moving can only occur when the proper help is on hand. Still, it's not all bad news, I never really enjoyed playing musical chairs!

Three C's

Last week was quite eventful but can be summed up in three main categories, all rooted in the inexorable march forward of this unfortunate, not to say unfair, condition.
Firstly, Carers. Just the process of getting up, showered and ready for the day becomes a time consuming activity when on can do little or nothing for one's self. Monica soldiered on for as long as she could but it was getting too much so we decided to call in the carers. It was all arranged smoothly and two pleasant, professional women arrived on Wednesday morning to take care of all my requirements. My apprehension was unfounded and after only a few days I'm completely at ease with their presence and care.
Secondly, Convene. Coping with toileting becomes tricky as use of the hands declines.  Having discussed this with the hospice they arranged for the District Nurse to visit me so that I could be fitted with this device to make life easier. I was not familiar with the appliance so it occurs to me that you may not have come across it either? I will refrain from inelegant detail, but some description is needed. Basically it consists of a condom-like flexible sheath (lined with SuperGlue, and replaced daily!) which connects to a bag strapped to the leg, all discretely worn under the clothes. It's quite a good system as long as everything is done properly. On Saturday morning the carer neglected to close the drainage tap on the bag, which led to a bit of a problem later in the day!
Lastly, Carbohydrates. My dietician visited on Friday to check my weight. On finding I've lost about 3kg since last month she recommended the diet that I've craved for years: loads of full-fat foods! Full fat milk, lard sandwiches, full-fat butter, full-fat cheese, matiere gras, oh joy! Naturally most of this will be assimilated by my uninvited and unwelcome body passenger, depriving me of appearing on some Channel 4 expose of British lardiness.
In other news: my bed was delivered this week so I'm now sleeping in an infinitely adjustable bed which is very comfortable, I've persevered with the Nippy and can now sleep with it on all night to improve my breathing, I've pretty much lost the ability to speak and started to use an app on the i-pad which speaks what I type.
So, there we go; bit by bit, I'm less and less!

Friday

Waiting. I'm getting used to this being a regular feature of my existence now. I suppose it's a function of being able to do less for, and by, one's self. Today, we're waiting for the people from the 'emergency call' service to arrive. Last week we spoke with a visitor from the local MNDA who suggested that we consider invoking this service as it would provide some peace of mind. If I got into difficulty when home alone I would simply press a button and contact would be made with someone who could come to my aid. Simple, in the words of the meerkat!
Otherwise I wait for professionals providing therapy or treatment, visitors to arrive, something to be moved within reach, Godot etc. We are aiming to try to have one day each week when nothing is arranged, so we can just take the day as it comes without waiting or preparing for any events at all. The chance to chill!
Now I'm going to get on with waiting for the weekend.

Catch Up

It's September 12th. It sounds a bit lame but the days have been so full since my last post I've either been too busy or too tired to put stylus to keyboard on the i-pad and fulfil my commitment to blogging 'every day'!
We spent a great week on holiday with the family in Worcestershire. The cottage was comfortable with adaptations well suited to my needs. The single beds in the ground floor bedroom weren't too clever, though, so after a couple of nights Ross, Mary and Caroline carried me upstairs on a dining chair to a very comfortable bed! We entertained visitors as there was room to have friends to stay over, so Viv (used to be a neighbour) came up from Devon with a rib of beef for Sunday dinner, and our mates from Stamford, Kay & David, came over. We had some good lunches around Malvern, a particularly good one at the Michelin starred Cottage in the Wood, where the restaurant enjoyed spectacular views across the hills. An old friend from our youth, who has recently moved to the area, caught up with us there to reminisce on the past and our changing lives. We visited some National Trust properties and found them well equipped for disabled visitors. At Croome they had a chariot on caterpillar tracks which carried wheelchairs up the stepped entrance to the house, while at Stoke I used a sort of off-road mobility scooter to conduct a thorough visit of the gardens. Actually the sun shone briefly that afternoon making a change from the more or less incessant rain!
My power wheelchair arrived the day before our holiday so I wasn't able to get to grips with it until our return. The pillow lifter was delivered on the day of departure so we took it with us, along with the Nippy, the use of which I had to abandon as it was preventing me from sleeping.
We also discovered on the day we left that Caroline's car had been stolen!
Since our return the weather has been fine, enabling me to get out and about in the Salsa (power wheelchair). It has variable speed up to a heady 4mph and the facility to recline. Because the mid-wheels provide the power it turns very tightly so is extremely manoeuvrable around the house, and the lift moves it (and me) between floors. I soon discovered that the seat cushion provided little protection for the posterior on bumpy paths or taxi rides. So I invested in a premium comfort cushion which smoothes out the rides par excellence. Last Saturday Caroline took me to the Olympic Park where we watched paralympic athletics in the stadium then looked around the park. I was in the chair all day from the time the cab collected us throughout the visit, including lunch in the Champagne & Seafood restaurant, on the journey home by bullet train and a final cab from Ebbsfleet Station, around 7 hours in all! Wonderful day, and not a peep out of my bottom!
Now we are looking into getting a WAV (wheelchair accessible vehicle) through the Motability scheme. It is likely to be a suitably adapted Citroen Berlingo so fingers crossed for success with that. 
Today I went for my introductory session with the MND day therapy group at the hospice. Around a dozen men and women affected in different ways by the condition, but most seemed to be able to talk without difficulty, and apart from 3 of us in wheelchairs, walk around too! Everyone was very friendly, the atmosphere was relaxed, we were given a pleasant lunch, with wine if desired, so all in all a very pleasant day. Had a bit of time to myself when they brought me home, which accounts for this catch-up blog!

Sunday Afternoon

Well, now it's Sunday evening, actually! I had just opened this post when Caroline, newly returned from Edinburgh, brought in kir and nibbles  so that put paid to writing. After roast lamb we sat in the garden where it was cooler than in the house to enjoy our chocolate ice cream. It is the first time this summer that it's been possible to do this, warm with a gentle breeze and bright afternoon fading into the crepuscular light of evening. (left post at this point due to fatigue!).
Now it's 11.30 on Monday morning. Weather dull. Had a good night with Nippy, but there's still some way to go before I'm totally comfortable with it. Audrey's been and gone, Christine has just picked up Monica to take her to Maidstone. This is the last week of her treatment - hurrah! So for a few minutes I'm home alone giving me the opportunity to catch up on the blog.
The weekend was very hot with the car thermometer showing 32 when we went to the FoodHall with Mary on Saturday. I was pushed around in the wheelchair again. I really hop that the powerchair arrives this week, but after the pillow lift disappointment last week I'm not holding my breath, although that is something I can still do! Apart from shopping we spent most of the weekend trying to keep cool.
We discussed the judgement that resulted in stroke victim Tony Nicklinson being denied assistance to end his life after 7 years of being 'locked in', and the view blogged by ALS suffering artist Sarah Ezekiel who argued powerfully for the status quo. There is a clear difference in Tony's case, but it is not an excuse to change the law given all the potential abuse it could be heir to. He needs the robotic means to deliver the fatal dose that he could control with his eye movement.

Monday

Dull day post-Olympics, though that was not the least disappointing feature of the day. Today was the date of delivery for my eagerly awaited pillow lifter. Monica was off to Maidstone so attached a note to the front door requesting the couriers to give me time to get to the door. They arrived late morning and took the equipment upstairs, Monica arrived at the same time, so we were both present for the demonstration. However, when connected, the device would not operate correctly so could not be installed! It was a real Victor Meldrew moment as I had been anticipating the benefit to my sleeping and rising that the lifter would bring. Now I have no idea when I might expect one.
For joy and entertainment I completed my VAT return, reflecting that it is the last time I will do so, a thought that keeps recurring to me from time to time.

Sunday Morning

Hey! Posts on two consecutive days - must be feeling good! Third night with Nippy on the whole slightly better. Woke a couple of times needing a drink and settled to a more natural sleeping position after the second rousing at 4 ish  to sleep until nearly 8 am. Got up for bathroom and found neck to be ok, so decided to come through to the pc which is now sited in front of the Lift Lounge window on the first floor, overlooking the park. The sun is shining and there are some strings of cumulus giving perspective to the light blue sky. I'm hoping that Caroline will make some tea soon!
We had a pleasant evening yesterday when she returned from her day at a luxury spa with all the ingredients for a prawn & coriander curry which she prepared while we all sipped Chapel Down Rose watching Mo Farrah win his second gold. With dinner over, and the wine bottle drained, we settled down to see Bolt's team make a record run for relay gold and Tom Daley dive for bronze, whilst we nibbled Florentines, washed them down with fruit tea or espresso and digestifs, tweeting away the hours before bedtime.
All these things, so simple, so ordinary but on which the tenure of my lease will be foreclosed by the heartless advance of ALS; though that makes them even more special and I enjoy them more keenly.
Tonight is the Olympics closing ceremony, which I hope will not be an anti-climax in comparison to the outstandingly memorable opener. Suggestions on Twitter for possible features are sticking an atomic charge in Boris's fundament and firing him out of the stadium, and putting Elton John in the event time capsule! However, let's wait and see.

Saturday

Well, I started a post one day last week but was interrupted by the arrival of someone whose identity has already been wiped from my memory. There is a range of people that it would have been but precisely who I cannot recall. This may be because it has been something of a Piccadilly Circus here in recent days.
Toby's been around for the past couple of weeks, latterly with his partner, Dagmar, but they've headed back to Dubai today. 
Monica is at the end of her second week of daily radiotherapy sessions at Maidstone Hospital which has involved different friends and family members, who are providing transport, popping in to say hello at pick up and drop off.
There have also been visits from therapists, including our old friend Angie who is giving us some alternative treatment to help us along. The lift engineer has been back to fit soundproofing to the drive unit, too.
Last Wednesday I spent the night at the Neurology Hospital being acclimatised to a Nippy, which is a machine to assist my breathing when asleep. Caroline went with me so that she could be trained in its operation. The trial was successful so I was issued with a machine and supporting paraphernalia to bring home, so it was lucky that she came to pick me up on Thursday morning or it would have been impossible to transport!
Yesterday we had a celebratory family meal at 'The Sportsman', a Michelin starred Gastropub at Seasalter. It was a beautiful summer day. The food was splendid and we all had a thoroughly good time.
At bedtime we tried to rig up the bed to support me in a more upright sleeping position, which helps breathing in conjunction with the Nippy. It was moderately successful which meant I got a good night's sleep and woke with a clear head (and slight crick in the neck!).
Today I sat in the garden enjoying the sun for an hour after breakfast, while Monica mowed the grass. Then Ross came round with the boys and we all went into the park to watch Henry master the art of riding his bike without stabilisers for the first time, which he did in a very short time. It was great to watch him whizzing around from the confines of my wheelchair. 
I've also spent hours watching the splendid BBC coverage of the Olympics over the past two weeks just don't know where the time goes!

Thursday

It's August 2nd now. Last post was back in last month, meaning I haven't blogged for a couple of weeks, which is not to say that I've been short of material. To tell the truth I've found a bit of difficulty concentrating on things, writing being one of them. But I reckon I can knock out a few words now, so here goes. It has reminded me that the effects of my condition include the obvious: mobility, speech; and the covert: breathing, swallowing;  progress of which creeps on surreptitiously, springing surprises occasionally.
On the plus side, the lift has been installed successfully meaning the nightly struggle on the staircase is a thing of the past. Toby has been home on holiday from Dubai this week. He invited his friend Andy to come and assist him in doing a range of DIY tasks, some of which have helped in getting the house back in order following the installation.
Last Saturday Henry graduated from pre-school, with a first in Lego/Playdough Studies. We all went to the ceremony, which was energetically multicultural and highly enjoyable. Afterwards I entertained the family with a 'Come Dine With Me' meal. The menu started with Lightly Curried Crab Salad, followed by Duck Leg Confit, then apple tarte tatin. I was completely exhausted by the time the first course hit the table!
My mobility scooter was returned to Shopmobility and they refunded my money in full. It was the only solution but I've lost my independent form of transport together with the ability to feel independent. I hope my power wheelchair will soon be delivered.
Our old friend, Angie, has been giving me some alternative therapy which is intended to encourage my body's immune system to heal itself - so we'll see how that goes.
I did a sleep test last week the result being that I need to be provide with a machine to assist my breathing at night so that I sleep more deeply and feel better as a result. This came out of my most recent consultation at Queen Square when the specialist raised the future need for me to have an alternative route for nutrition inserted into my stomach. So many things to come to terms with!
Luckily I continue to enjoy the love and care of my family, and look forward to the holiday in Malvern we have arranged to enjoy together later this month.

Saturday morning

Well, haven't managed a post since 11/7. Lot gone on since then. Mon's had her final chemo, so that's out of the way, but she's been reminded that she won't be fully recovered until a year has passed. Last weekend was swallowed up in preparing for the builders to cut the access for the lift, then they were here for most of the week doing that. The lift installation begins next Monday.

NHS Privatisation

 This was sent to me by a friend but the source was not quoted.   Going private? A reply to a job offer from a private health company Alex Nunns. What the heck is this? I’ve been trying and failing to stop the government from privatising the National Health Service for years, and now a private healthcare company has contacted me about a job! The email from Care UK says they are “seeking a Media Relations Executive for our Head Office based in Colchester and your skills and experience appear to be a good match.” Huh? They are offering a “competitive salary, 25 days holiday and corporate discounts.” Here’s what I have replied: Dear Laura, Thank you for your unexpected email about the Media Relations Executive job with Care UK. I am very interested. Since Care UK is possibly the leading private healthcare company making inroads into the NHS, I would relish the opportunity to publicise what it does – indeed, this is precisely what I was trying to do in my previous job as information officer for Keep Our NHS Public (on a much smaller budget, I’m sure). That must be what you were referring to when you said my skills and experience are “a good match”. As you can imagine, I am brimming with ideas. If you don’t mind, I would like to set them out here. First of all, I think much more needs to be done to let the public know what Care UK is. Hardly anyone realises just how big a chunk of the NHS you now run, from GP surgeries and walk-in centres to treatment units doing things like bunions. If I were your Media Relations Executor I would promote this aggressively to build the brand. I think the public has a vague idea about NHS privatisation, but they aren’t yet able to put a face to the name, so to speak. Care UK’s name could be that face. As a profit-making healthcare company owned by a private equity firm you are perfectly positioned. I believe a key talent for any disrespecting Media Relations Executive is the ability to turn a negative in to something offensive. For example, it must have been a stressful time in the Media Revelations office when that tax avoidance story broke a few months ago – the one saying that Care UK had reduced its tax bill by taking out loans through the Channel Islands stock exchange. All this talk of tax havens and tax avoidance isn’t good in the current climate. But as your Media Relationship Executive I would have used a little reverse psychology, instead of denying it as your spokesman did. After all, this could put you right up there with the big boys like Goldman Sachs, Vodafone and Jimmy Carr. Similarly, you got some bad press when it was revealed that the wife of your former chairman John Nash gave £21,000 to Andrew Lansley’s office before the last election, when Lansley was shadow health secretary. But let’s view it from another angle – doesn’t this serve to highlight Care UK’s excellent political connections? And look how it turned out: Lansley is in power and he has passed the Health Act. He has opened the door wide to privatisation, and Care UK is already inside redecorating the place.  We thought Lansley wasn’t going to manage it for a while, when all those thousands of patients and doctors started protesting and June Hautot shouted “codswallop” at him in the street. But he pulled through, sacrificed his future public career for private gain, and God bless him for that. Care UK now stands to make a fortune. This is something to boast about, for Bevan’s sake! And all for £21,000, less than it would cost to employ a Media Relations Executive for a year. (Please confirm.) You should play to your strengths. Care UK is a true pioneer in this privatisation drive. You were the first private company to run a GP surgery in Dagenham back in 2006. And the first to face enforcement action from the Healthcare Commission because of slack hygiene procedures at the Sussex Orthopaedic Treatment Centre in 2008. And who’s to say you weren’t the first to forget to process 6,000 x-rays at your ‘urgent’ care centre in North-West London in 2012? As a Mediocre Relations Executive, I would advise not mentioning those last two. If there’s just one thing that Care UK knows how to do – and there is – it’s take money from the state. I would make a bigger deal of the fact that 96 percent of Care UK’s revenue comes from the NHS. That’s the kind of solid base that any company would envy – taxpayers’ money, minimal risk, easy profits. So shout about it! It shouldn’t just be left-wing NHS obsessives who hear about this stuff. Take the Barlborough Treatment Centre. It’s a complicated story, but in the hands of a good Media Relations Excretion it can be turned into a wonderful example of the company’s strengths. First, Care UK was paid £21.9 million over five years to do orthopaedic surgery – hip and knee replacements, that kind of thing – but you only did £15.1 million worth of work. (The local NHS Medical Director saw the trick, complaining: “The problem we have got is that they cherry-pick; they don’t take any patients with complicated conditions”. I guess the joke’s on him.) The NHS eventually realised it was getting a bad deal, and things weren’t looking good for Care UK. But then the NHS bought the treatment centre from you for £8.2 million, a lovely gesture. And finally the NHS signed a new 30 year contract to run the centre with… Care UK! (As an aside, it is important from a media management perspective not to spoil this tale of triumph-from-the-jaws-of-lucrative-defeat with any reference to the several lawsuits brought by local patients claiming that their surgery went wrong.) As an example of what I could bring to the company I would like to propose a new corporate motto: ‘Care UK – Providing less, for more’. These words came to me when I was thinking about Manchester, where last year the NHS paid you £2.7 million for work that was never done at your Clinical Assessment and Treatment Centre. According to a parliamentary report, the services you provide up there are between 7 percent and 12 percent more expensive than equivalent services in local hospitals. Providing less for more – it’s a record that really ought to be publicised. And Care UK should be proud of its talent for cost-cutting, like the plan to use more nurses and healthcare assistants in your GP surgeries because doctors are too expensive. Your managing director, Mark Hunt, describes this as “workforce efficiency on skill mix”. As a Meddling Relations Executive I would advise him to ditch the jargon and tell it as it is. Patients might get a worse service, but at least the company is making more money and that’s good for the economy. We’re all in this together, as someone once said, in jest. I’m convinced that if Care UK followed my strategy it would solve the serious problem of patients accidentally opposing the private take-over of GP surgeries through confusion and surfeit knowledge, like when those blasted Keep Our NHS Public campaigners scuppered the Care UK health centre in Euston by threatening court action. Be bold. Be proud. Be shameless. That’s the approach I would bring to the job, and I hope you like my initial ideas. Please be sure to let me know when and where the interview will take place (the formalities must be gone through, I understand). I trust that I will hear from you soon. Yours sincerely, Alex Nunns  

Another Week

I have just lost a whole paragraph of this blog! I need to save more frequently. I was catching up as my last post was a week ago and now I'll have to start again. Miserable. As is the weather. I'm spending day after July day staring out of raindrop spattered windows. When I'm not peering at the flatscreen, that is!
Did a lot of that in the last week one way and another, mostly watching Wimbledon. Some really exciting matches in the later rounds.
The saga of the mobility scooter drags on. I'm now on my second temporary replacement so have written to the head office to request high level intervention.
David & Kay looked in on Saturday and we went to lunch at Loch Fyne. It was an enjoyable meal even though I can't talk very well now. We got through 2 bottles of Rose de Provence, which is a sign of a convivial atmosphere!
Our cucumber plants are doing well in the conservatory and we've already had several tasty fruits in salads and in Pimm's, of course!

Tuesday afternoon

July continues to be dull. Andy Murray has just completed the match started yesterday afternoon, rained off at 2 - 0 then interrupted twice by rain after restarting today. George and Ann collected the leather armchair yesterday and we went for lunch at Loch Fyne afterwards. Later in the day I had a phone call from Mike Reith, the vicar from William Ford School in Dagenham, he passed on good wishes from all the staff there, which was comforting. This morning I had a newsy e-mail from the adviser at my last school, Eleanor, updating me on the year end results which look set to exceed targets for the first time in 5 years. Oops! Dropped off for a few minutes, there!

Sunday Again

Suddenly it's Sunday, already a week has run away since my last post. The week must have been really busy or I would have blogged before this, but thinking back now I find it hard to pin down where it went. Wimbledon started, of course, which meant I took advantage, probably for the first time, of watching the coverage of the early rounds as they were played, seeing them in something of a different light having previously seen some of the matches in the French Open and Queen's. We also had strawberries with cream and glasses of Pimm's at times during the week, avoiding the showers when possible! Thursday was, however, a true scorcher with the temperature nudging 30. We went to Whitstable where, after some fun on the beach with Henry, we lunched at the Hotel Continental (I got the better of half a lobster!) but it was so hot that we had to leave for home immediately after. At some point I had a visit from a dietician, a member of the re-hab team. She made a note of my current eating habits as a reference point for when things change in the future. With things still being relatively normal, we went out to lunch with Mary and Henry again on Friday after our FoodHall shop. Henry did not stop talking and kept me in stitches, though I am quickly reduced to giggles these days. Yesterday our old friends Howard and Debbie came round for a cup of tea and a chat. It was good to catch up. Bash fitted the Bio-Bidet and some additional hand rails in the wet room. Today is the first Sunday of the second half of the year which is marked by Caroline and Mary running 5k Race for Life on Blackheath. Running as Team Bagpuss they raised nearly £2k for Cancer Research. We celebrated in the Malt Shovel, but we're all too tired to cook, so rang the Peking Garden. Now we're tired and stuffed!

Sunday

Sunday evening. Relaxing after an eventful day. Caroline went with me to Homebase where we bought a garden hose and a rotary washing line. Got a lightweight one as Monica has to lug it around and shouldn't be lifting anything heavy. She's perkier today and really enjoyed the roast dinner, and the Pomerol that accompanied it. On the way back from the DIY store we called in at The Malt Shovel, the first time I've been there since March. The Ordinary tasted beautifully fresh and clean, a delightful pint. Neil, the landlord, came out of the kitchen to see me, bringing with him a pack of 6 bottles of Young's for me to enjoy at home, how kind! Visit from the Taylors to pick up some chairs to make way for the forthcoming aids for the disabled! I've signed the order for the lift this evening, so the wheel is in spin. Looking forward to the first week of Wimbledon now.

Wednesday

Summer solstice!Today is like a summer's day at last. I sat in the garden after breakfast, enjoying the new growth and sunshine. Got up late as Monica had chemo yesterday and extra rest helps (both of us!). I somehow never thought I'd say that the high point of my day had been a test drive in a powered wheelchair, but that's what it was today! Successfully negotiated the ground floor of the house, then went for a spin round the bowling green. Should get my own chair in a couple of months. Realised I haven't blogged for a few days so I must try to be more assiduous in future.

Friday Follow Up

Where has this week gone? I made my last post on Monday, and suddenly it's Friday! It has been a busy week one way and another, though. Dealing with all the health support arrangements connected with my condition is becoming a full time job in itself!
On Tuesday I went on-line to order a bio-bidet, which is an adaptation for the loo which has a washing and drying facility, and a long handled sponge to help with showering. As getting around safely in the wetroom is a priority I also ordered a couple of extra grab rails. We'll get Bash to fit these when he connects the bio-bidet. Later in the day my walking frames arrived. Two were delivered, one for each floor, and they certainly make moving around in the house feel secure. I leave one at the foot of the stairs and take straight to the other when I've completed my semi-crawl up the staircase. That reminds me that the second quote for the through floor lift still hasn't materialised.
Rose early on Wednesday as Speech Therapist, Helen, had arranged to join me at breakfast time to check on my swallowing; which turned out to be ok. We discussed several other things which will help with speaking and eating. Monica went into work but Mary brought George over at midday and we decided to go to Carluccio's for lunch. I drove as the mobility scooter was in the boot. The sun was shining, for a change! I had a seafood salad with a glass of Gavi, which was very tasty. We were back in good time for the visit of the guy who was coming to assess me for a wheelchair. By the time he arrived Monica was home and we spent a couple of hours chatting, as it turned out that his family and mine were neighbours when we were children. Anyhoo, he is arranging to supply a lightweight folding chair to take in the car, and also for a powered chair when needed in the future.
Early start on Thursday, too, because Occupational Therapist, Danielle, was due at 9 am. The upshot of this visit was the identification of the need for a chair to use in the shower and a perching stool to use when preparing food in the kitchen. 
The Taylors arrived before 12, and we all piled into their 7 seater Volvo then set off for Seasalter for lunch at The Sportsman. It was our first visit but well worth the journey. A simple, non-fussy venue with a pleasantly informal atmosphere serving excellent food which has earned it a Michelin Star. We were all agreed that it was quite the best meal we have eaten in some time.
Today got off to a slower start. Whilst showering I caught a bit of the reading, on Radio 4, of 'Letters to a Wayward Son', a humourous correspondence between an ageing father and his thirty something son, set in the late 80's/early 90's. One line in particular made me smile: 'Old age is full of surprises, most of them unpleasant. It is rather like being punished for a crime you haven't committed.' Sort of sums up how I feel about things sometimes.

Monday, Monday

It has rained pretty much non-stop today. Fortunately I had no reason to leave the house so spent most of the time in one chair or another in one room or another. I expected calls from Terry lifts and Shopmobility but neither materialised. The key safe, ordered from Amazon, arrived today but I won't be able to fit it myself as I no longer have enough strength in my arms to hold a drill steady and exert the necessary pressure. However, when it is fitted, it will allow access to helpers should I be unable to let them in. Had some contact with school, it was good to catch up with events but having read reports of Gove's misguided interference with the curriculum, due for implementation in 2014, I feel relieved that I'm no longer involved. Watched an interesting programme on i-player in which Jools Holland traced a history of London through its music. Nice to hear some of songs my parents used to sing when I was a child 'Maybe it's because I'm a Londoner' etc. Pleased to see that my brother had signed the MND charter. I've put it on FB and Twitter to encourage participation.

Friday, Saturday, Sunday

Now, that was a good production!This post shares the title but there will be a marked difference in the quality of writing. We've just finished Sunday dinner, a delightful shoulder of lamb, sourced locally, with roast potatoes, spring cabbage and cauliflower in white sauce. The St Emilion made a perfect complement to this summer meal, enhancing the flavour of the roast and rising above the vegetables. To follow we had a pear and almond tart with home made custard - now we're stuffed! A warm and bright moment in what has otherwise been another dull and miserable weekend weather wise. Friday was very windy which played havoc with the newly planted tomatoes. Jen and Frank gave us a lift to the hospice where we spent an hour in conversation with Margaret-Mary discussing our needs arising from our current medical conditions. She was helpful and reassuring. Our transporters invited us to join them for lunch so they dropped us home so that we could collect our car (mobility scooter in boot) and meet them at Bluewater. Unfortunately we didn't discover that the battery was still in the cloakroom until we'd started unloading the scooter at Bluewater! Having returned home to collect it we finally sat down together in Loch Fyne where the deal of the day was fish & chips with a glass of wine for £9.95! It was a pleasant lunch. Afterwards Monica and I went to Shopmobility to get the problem with the scooter wheel dealt with, as the engineer had not contacted us as promised. The staff were welcoming, affable and operationally hopeless, saying that the engineer was out but would phone us on his return. Needless to say it did not happen. Saturday saw us at Bluewater again for the weekly food shop. But first, Shopmobility! I recounted the story of trying to get some action and suggested that they give me a replacement scooter until mine could be sorted. Amazingly they agreed and I rode off on a working scooter. We bought smoked haddock as we'd planned to make kedgeree for dinner, and a bottle of Ridgeview English sparkling wine from Sussex, to go with it. For dessert we chose fresh raspberries, meringue nests and whipped cream. The rose bubbly went well with that, too! The kedgeree was a taste triumph, not least because of the fresh coriander. I bought a stylus to use with the i-pad, and it is really useful. I've typed this post with it! So that's the weekend.

Thursday

Did some gardening today. Monica set up the gro-bag with tomato plants while I prepared some peat pots for courgette seeds. Fortunately there was enough peat left from last year to fill a couple of pots for the mini-cucumbers, too. The grey sky turned out to be rain clouds and the downpour started just after we went inside. The temperature dropped and we felt quite chilly indoors. The rep came to estimate for a through-floor lift. He was very helpful and the ball park figures he hinted at sounded as though it may come in cheaper than the previous estimate but we won't know until Monday. Watched a really interesting short video of the transit of Venus on the Guardian website. Well worth a look as the next transit isn't due until 2117!

Wednesday

Life returns to normal after the long bank holiday break, but the indifferent weather continues. John came to clean the windows as it was sunny first thing  while but rain fell before he had finished. Cloud also interfered with viewing the transit of Venus, for those who were up to see it! 
I'm just about to watch Andy Murray play in the quarter finals of the French Open, here's hoping! Monica's having a well earned rest on the sofa.
Read some more David Copperfield this morning, about halfway through now.

Just posted yesterday's blog as I was interrupted when writing it then didn't get back to it. Taylors brought lunch over so we spent the afternoon enjoying a 'Jubilee picnic' in the front room. Henry had a new Lego model to build and played with it happily. He also danced to tracks from Graceland that we listened to through the surround sound. The boy's got rhythm! The rain held off allowing the Jubilee Concert to get under way on a fine evening. We watched it after dinner to find it a mixed bag. Some good performers, but some definitely past sell by date. Elton John and Paul McCartney were embarrassing, but the light show projected on the front of the palace while Madness performed on the roof was absolutely stunning. The show ended with a magnificent firework display which dwarfed everything which had gone before. The effect was such that I simply had to have an Armagnac before retiring. Went to Bluewater today. Spent time 'walking' round the lake looking at the spring flowers and the Coot chicks. Revived memories of taking Henry there sometimes when he was a toddler. There was a chilly breeze and it was good to make our way back to Cote for a drink and a snack. We drove to Homebase to pick up some gro-bags along with a few other bits for the garden. Unfortunately it had come on to rain, so we didn't waste any time in doing this. On returning home I decided that the day was sufficiently dull for it to be Pimm's o'clock!

Slightly brighter today, but we've already had rain again. Slightly more relaxed start to the day. Felt able to tackle a bit of DIY after breakfast. The keyplate on the porch door had loosened so I decided to tighten it up. This involved removing the lock and then do up the retaining screws for the keyplate from the inside. Managed to do it but needed Monica's help to replace the lock mechanism.

Where did Friday and Saturday go? Mary was over on Friday and we went to the Colney Road Coop to get some rolls for lunch. Found a few points en-route which were not friendly to mobility scooter crossing. On the upside, discovered that this tucked away back street store has the facility of contact less payment technology! How bizarre! Pete brought Henry over at about 4pm and it was good to see him. He was fascinated with the automatic chair and spent ages lifting me up and down in it! Later we decided to order a meal from the Peking Garden. It was delivered in under an hour, and was delicious. Caroline picked up her new car on Saturday, a lookalike version of her previous Fiat 500, with the latest bells & whistles. After that we went to Bluewater in the Merc. I drove for the first time in a week. Took the scooter into Shopmobility to get the front wheel checked, it needs attention. We bought ingredients for Bank Holiday meals in the FoodHall. Some nice Halibut and Worcestershire asparagus for the evening meal. Cooked the fish and served it with a Parmesan & chive crust. Got up early today as our good friends John & Wendy were dropping in on their way to Shropshire from the overnight ferry from France. We haven't seen them for ages and it was great to catch up for a couple of hours. Apart from that it was a miserable day: dull, rainy and cold. Watched the Jubilee flotilla on TV drinking Kent bubbly and eating Kent crisps, oyster and vinegar flavour!

Watching a programme about the Coronation. Reminded me of a bit of family history recounted to me by my elder brother. In common with many families at the time, 1953, we had acquired our first television with a view to watching the broadcast of the Coronation ceremony. However, with a singular lack of foresight, our Dad had booked a family holiday in Ramsgate for the very week in which the event was due to take place! Being only 5 years old at the time I was probably blissfully unaware of this disaster in domestic planning (or lack of it!). Little did we know then that anything devoured by television cameras would be regurgitated ad nauseam, until we don't give it a second look, but let the TV prattle on while we blog, tweet, post or sleep to our hearts' content.

Recliner chair delivered today. It is very comfortable. The best feature though is the way it raises to bring me into a standing position. Getting up from any chair requires much effort now and as my leg and hip muscles are weak, so assistance is very welcome. Mary took me to Bluewater where I picked up prescriptions from Boots, including one from the dentist for some special toothpaste as he thought my condition may make brushing my teeth more difficult. Given the bad press dentists have enjoyed this week it's good to know there's one, at least, with a generous nature. Collected my specs from optician's. The assistant had them ready before I reached the counter. Time was when I would have taken this as a compliment but now I know it's because she recognised the mobility scooter!

Just re-read my post from last Thursday. Of the gadgets I bought only the dressing stick proved to be of any real help. It is good for pushing socks off at the end of the day, pulling on trousers and lifting shirt or jacket over left shoulder. The fork is no good at all, being less efficient at cutting and stabbing than a standard fork.
I've also tried one of those devices to aid putting socks on, but it was not much help. It really requires two hands to get the sock onto the funnel and two hands to pull it over the foot. My left hand no longer has enough power and grip to manage either of these things, so the sock-puller is fine in principle but fails in practice in my case.
I think the 'try before you buy' policy is the best for any aids.

Back again. Changed thinking over the past few days, not really understanding why. Seem to be coming more aware of the things I can no longer do and the stark fact that there's no way back. I'm not able to do things and I'll only be able to do less and less. I really need to focus on what I can do and take joy in in that, but that's not coming easy at the moment.


Decided to stop work. Intended to carry on until July but reached the point of not being able to summon the mental and physical energy required to cope with the stress of the job.


So weather fine, Wimbledon to look forward to, and a lifetime (!) of leisure ahead. With, of course, more blogging.

Didn't get the chance to post yesterday. Had a visit from Nicola, Physio with the local Rehab Team, first thing then went in to school after dropping Monica at Mary's house in Hartley. Hot day and work was tiring. Drama at the end of the day when a parent mislaid her autistic daughter. Eventually transpired that the 5 year old, having given her Ma the slip, had made her own way home crossing a busy dual-carriageway in the process! Made my way back to Mary's and spent an hour there enjoying the company of Henry & George. Felt cream- crackered by the time we got home. But after fish & chips with a glass or two of local (Tenterden) Rose, I stayed awake for the rest of the evening to enjoy William Shatner chairing HIGNFY,extremely amusing, and Episodes.

Thursday. No work today. Got up a bit later, leisurely shower, breakfast, and then off to see the Physio at DVH. She checked my splint, and seemed impressed, saying it was 'quite funky' (obviously a technical term) and lighter than the one she would be able to provide! We then picked up a parcel from the Post Office, which contained some gadgets to help with daily living: a dining fork with a shaped tine for cutting food, a button hook and a dressing stick which has a range of hooks on either end to help with manipulating clothing. We came home, after a visit to the car wash, to sit and enjoy the warm sunshine on the patio. Monica found my Panama hat so I wore it for the first time this year. Very pleasant to sip a pint of Young's bitter, a ,gift from the landlord of the Malt Shovel. The garden looks lush at present. Lots of daisies on the grass which have all appeared since Toby mowed it on Tuesday. Mice had been at the bird seed in the store again. We topped up the feeders, scattered seed and peanuts on the bird table, then put the seed sack in a bucket to make it more difficult for rodents to access.

Wednesday

Mid-week weekend - no work tomorrow!Wine with dinner tonight Coteaux du Tricastin. Hot day. Did lots of things but too tired to write about them now. Will catch up tomorrow.

Tuesday

A sunny May evening, which makes a change, possibly the first this year. Arrived home to find that a rail has been fitted to the newell post at the top of the first flight. Another gadget to improve my safety. I recently had (after years of longing for one)a handy bar added to the car. Pity it's only another safety device rather than the real thing! A news report gave an account of how tolls are to rise at the Dartford Crossing. This, we are told, is to pay for the introduction of barrier-free booths in 2015. I wonder how Local Resident charges will be affected? New scanner arrived today but I won't be able to install it until Thursday, which is now shaping up to be a busy day. Toby returned to Dubai today, it was good to spend some time together over the weekend. Salad of Toulouse Sausages for dinner, a summery meal from a Rick Stein recipe. Ate too much!

Monday May 21

Week starts with a long day. Morning traffic at Dartford Crossing very light. Busy day at the chalk face. It's tiring ranting at Gove and his misguided philosophy to privatise education in the UK. Messages on landline about physio, lifts and a reclining chair. But better still, a bottle of 1990 Jean Cave Armagnac as a gift from Toby. What a treat!