July – August 2010 – Reaching A Plateau – More Shows / Trips – Possum System – Hand Splints

July started with a trip up to see the family and a party for Carol’s cousin in Blackpool. We’d been invited to Sarah’s 21^st a few months ago and I wasn’t sure about it but Carol had really wanted to go. In the end I was glad we went as it was great to see all the family, and the first time we’d been together with them since Annie’s funeral. Carol had progressed since they last saw her but that’s the beauty of families – it doesn’t matter – everybody was really pleased to see us and Carol was able to catch up with all the gossip.

We also had a change of venue for our stay as our very good friends Hils and David were kind enough to offer us a place to rest our heads at their new house in Appleton Thorn. We spent a couple of days with them and it was really good to catch up, and be shown the local sights(?!) - and I know Hils will always thank me for demonstrating my gardening skills and helping her clear that dreaded ivy off the wall of the house! No trip back home would be complete without a diversion around Birmingham and down into London – yes it was “JB” Sunday matinee again – still keeping count out there?

One major point to note about this two month period was a distinct slowdown in Carol’s progression. I’ve read a lot of different reports and stories about MND’s patterns and this was where we really started to see Carol’s progress change. After 5 months or so of rapid deterioration Carol had one of those plateaus where very little changed. Yes there were slight differences, in feeding / swallowing and hand strength, but nothing of any real note during this time. We suddenly felt good about how the next few months would look and actually booked a holiday for mid October – a cruise around the Canaries (a cruise - that’s another one of those things we could now cross off “the list”).

I do feel we did make one real mistake here though, and it was because Carol was feeling so good we delayed going to see the specialist about the PEG.  An appointment for Carol to be assessed did come through but we chose to wait until after the holiday. I would regret that decision later and it’s still probably the only thing I’d change when I look back on how we’ve dealt with all of Carol’s challenges – I wish we’d had the PEG fitted earlier.

Carol went back to Marie Therese House for an assessment with the physiotherapy team but there wasn’t anything new to discuss around the condition. However, we did talk to a different specialist that day and she suggested Carol should get a Possum system installed in the house. Possum is a system that allows you to control numerous devices from a central point using a remote control.

When the engineer came round he advised us what the system could do and recommended which household items Carol should programme in to control. There’s so much more that can be done with this system than we actually had set-up, but Carol’s limitations really set the boundaries. Carol was given a touch screen remote unit that could now control TV, DVD, Sky, lights in the lounge and even the front door (with an intercom and remote door release). The engineer even added the house telephone into the system, and there were pre-programmed statements added – things like “hello”, “how are you” and so on. Carol never used that part of the system as I don’t think she wanted to risk getting into telephone conversations with anyone outside of the family. I must admit that Possum is an excellent system and it would work really well for Carol for a number of months to come.

The other appointment Carol had in August was with the specialist “splint” team at Treliske. They had been asked to look at Carol’s hands and fingers to see if they could create a bespoke splint for comfort. Carol had a number of the Velcro wrist guard type supports but wanted something that would specifically hold her fingers in place (they were starting to curl under into the palm of her hand). They did a great job and Carol left with a strange moulded resin / plastic kind of fingerless glove. The physio said it was something similar to a splint he’d made before, but he changed the design a little on Carol’s, and watching him create it was very interesting. Carol would get the other hand done a couple of weeks later.  

We finished August with a flurry – as another treat for our 20^th wedding anniversary that was coming up on 31^st (to go with the cruise). We booked 4 days in London over the bank holiday weekend and tickets for 4 shows. We also changed the hotel this time, as I knew getting around on the tube with the powered wheelchair wouldn’t be easy. We moved to the Holiday Inn near Regents Park – just a 5 minute walk from Oxford Street – and that would serve us well for getting around (and Carol really enjoyed the scrambled egg for breakfast!).

We saw shows on each of the 4 days and had a great time wandering around London - or even just sitting and watching crappy TV together in the hotel room – it was a really good weekend and Carol was on great form. I was even refusing to get too stressed about all those people walking into the wheelchair because Carol was suddenly invisible again.

The weekend started with “Jersey Boys” Friday night (no surprise there) and then on Saturday we saw “Priscilla - Queen of the Desert”. I’m not 100% certain but I may have been the only straight man in the whole theatre – but it’s a fun show and worth a visit just for the sights in the audience! You can probably guess what Sunday matinee was – yes it’s “JB” again – I’m making no excuses I did warn you that we love this show. The only slight disappointment came on Monday night, we went to see “Sister Act” again. Now I only booked these tickets because the date was during the scheduled run where Whoopi Goldberg was playing the Mother Superior character. Whoopi Goldberg – Sister Act – London Palladium - you’ve just got to go and see that haven’t you? Unfortunately over that weekend Whoopi’s mother had passed away back in the States so when we got to the theatre we were advised that she wouldn’t be appearing. As I said a slight disappointment but we still enjoyed the show and had a good night.

So it was a quiet 20^th wedding anniversary after that busy weekend and we were looking forward to our cruise with Carol in good spirits.      

May – June 2010 – Life Carries On & Progression = New Equipment

We had settled down back at home after the wedding, the ramp was fitted and Carol’s powered wheelchair had arrived. This made life easier as Carol could comfortably drive herself around, and the chair provided far better support for Carol’s upper back / shoulders / neck, so much so that we even started to venture outside again. Watching Carol crank the speed up to level 5 and whizz off in front always made me laugh. The Speech Therapist brought a newer model Litewriter to try, this one had a texting facility like a mobile phone, so we had to delete all of Carol’s carefully pre-programmed swear words from the old one before it went back – to avoid embarrassment for the next user of course - and then we had to put them all back into the new one so Carol could continue to swear at us freely!

Surprisingly there was only one show during this period – a weekend trip up to see the family included “Peter Kay” at the MEN Arena – we took Paul along for a night out and made our way in on the Metrolink with Carol in the wheelchair. We’ve been fans for a long time and it was great to see him live – but even now I’m still not sure about Rick Astley as the support act!! 

On the back of Lou’s visit we started talking to our OT about options for the future. This included looking at additional equipment and also exploring adaptations to our house that might make Carol’s life easier as the disease progressed. I’ve looked back on these a few times over the last year, with everything we know now, but can’t honestly say there is anything we’d have done differently. Our OT (Angela) was instrumental in driving these ideas and she did a lot of work looking into different options for us. I’m sure I frustrated her with my constant dismissals, it’s just that neither of us really wanted the major restructuring in the house that would have been required. There was no possibility of our house fitting a through floor lift so the two main ideas that were measured and quoted for were changes to bathroom facilities.

In fairness to Angela at this point I was already struggling to get Carol into our bathroom shower, even though we’d had a larger stall fitted just after Carol’s diagnosis. We’d tried various different shower chairs over a period of weeks and there didn’t seem to be an ideal fit with any of them – too wide / not supportive enough / too slippy. By this time I’d resorted to manhandling the most suitable shower chair into the stall, wheeling Carol on the commode as close as I could get her and then somehow using the belt and turntable to move Carol through the shower doors and onto the shower chair – health & safety / manual handling…..don’t even go there!

The first plan that was presented involved turning our upstairs bathroom into a wet-room – an idea I really didn’t like. This was quickly followed by the plan to install an all in one shower / toilet / washbasin unit in the downstairs bedroom – this was a cubicle type fitting, similar to the kind of thing you may find in a caravan. Anyway I disliked that idea even more, especially when we looked at the water drainage options in relation to our sewer system –they were not good! It wasn’t just about the money – and yes they were expensive – it was the thought of the changes themselves and the simple fact that neither of us really wanted them.

What we did go for in June was a stairlift – and what a great relief that would be. We had to face the fact that Carol’s legs were no longer capable of climbing stairs safely. Over the last few weeks Carol had gone from the one step at a time method, to shuffling up and down on her bottom, to eventually being carried up and down by me and the boys – this was not sustainable, and certainly not good for any of us. Angela organised the stairlift assessment and we had the choice of buying a brand new one (too expensive) or renting a reconditioned one (yes please). The local branch of MNDA actually funded this for us, which was greatly appreciated, and we ended up with a basic stairlift fitted for £500 with a £10 per month rental charge – and that was just fine. Everybody in the house had a go, (as I’m sure you would expect!) but in all seriousness this took a lot of the pressure off the family and the care team and made Carol’s life a lot easier.

I should probably just update Carol’s general health and condition at that time, testing my memory and taking some reminders from a number of assessment letters and meetings we had over the period. You’ve already been reading about the progression of the disease in earlier posts - this is where Carol was in June 2010:

·         Carol’s voice was almost unrecognisable and the words she tried to form could not be understood to any real degree.

·         Carol was still eating but the foods had become softer and more easily chewed / swallowed and drinks continued to be thickened. There were occasional coughing fits, brought on by eating and drinking but these did not cause any major distress. We discussed having a PEG fitted again but no decisions were made.

·         Carol’s ability to swallow was weakening and there was now a build-up of saliva in the throat that Carol was having difficulty clearing. It wasn’t that Carol was producing any more than usual, it was the fact that the general muscle weakness led to swallowing issues which meant that keeping the throat clear took a real effort. This particular problem would plague Carol for the best part of the next year before a solution was found – and throughout that time Carol would try numerous medications without any success – and even botox (more on that later) - she would even go down the route of trying additional medications where a dry mouth was a possible side-effect. At times the problem was so bad that Carol would need to wear a bib and we went through kitchen roll at a rate of knots.

·         Carol’s legs were now too weak to walk or stand unaided but she was still able to support herself with help into a standing position for transfers between seats using the belt and turntable.

·         Carol’s upper body was now showing severe weakness in the right arm and hand but the left hand still worked pretty well. This was good because it was Carol’s driving and typing hand, and Carol could still type well using both the Litewriter and her Iphone.

·         Carol’s neck muscles had become much weaker over the last couple of months and she was now wearing a support collar throughout the day.

It sounds quite scary reading this list back now but in reality this is how far Carol had progressed in less than a year – and because the physical changes were now so visible, affecting such key areas of the body, it seemed as if the progress of the last 5 months had been at a sprint.

May 2010 – Key Decisions Made On The Care Package And Carol’s Advanced Directive

A meeting with Lou from MNDA on 14^th May set the next list of actions in motion and also opened up some areas for discussion that Carol had not previously wanted to talk about. It’s probably fair to say that sitting next to Annie in hospital had started Carol thinking about her own future and there were some things she was now willing to look at. Lou discussed everything with us that day and Carol started to talk about the support that carers could provide and then gave us her first thoughts on end of life choices. Over the next month both of these would be in place:

Care Package – Lou referred Carol to the local Community Matron (Amy) and we met with her to discuss Carol’s current situation and what may be required going forward. Amy was (and has continued to be) fantastic in helping us to sort this key area out and keep everything going so smoothly for so long. Within a week we met with the Community Care Team Lead (Sheila), who Carol had actually worked alongside during some of her nursing training placements, and arrangements were put in place for a full package of care to support Carol (and me) each day. The local team of Healthcare Assistants were brought in and so began our now long standing relationship with Keeley, Lisa, Lisa, Michelle, Rhonda and Sue. These ladies are quite superb in everything they do for Carol and I can’t stress enough just how much their help and support is appreciated. We’ve come to rely on them quite heavily and nothing is too much trouble, I really couldn’t do this without them. Additional support is also provided by their colleagues in the District Nurses team who help Carol with the medication and acute care side of things – again huge thanks are due to Bel, Gemma, Helen, Jackie, Liz, Mary, Sheila and Trish – and these are some more of the ladies Carol actually worked with during her training. While I’m passing on my thanks I must also include the Teams’ Manager Lucy and Carol’s GP Dr Anderson for everything they’ve done and continue to do for Carol and the family.

Carol’s care package has evolved over the last 18 months and currently involves 3 visits per day Monday – Friday (morning / lunchtime / evening) with additional morning and evening visits at weekends. This is delivered primarily by the Healthcare Assistants with the Nurses supporting as required (daily at present due to the syringe driver – but more on that later). This package of care provides us with peace of mind and high quality support for Carol’s daily needs – and this is very much appreciated by Carol and the whole family.   

Advanced Directive – previously I’d had no idea what one of these was but Lou explained that it’s about making your personal choices for end of life care clearly understood should you be in a position where you will need assistance. Lou talked us through some of her experiences and listed a range of options that Carol may want to consider. As I said this had been a taboo subject up to this point – Carol had not mentioned it and I’d steered clear of voicing any notion that I’d thought that far ahead (even though I obviously had – it’s impossible not to). Maybe it was sitting at Annie’s bedside that changed Carol’s mind – or maybe it was just the right time to have this conversation. Lou had all the paperwork sent to us and we also met with Dr Anderson to discuss Carol’s thoughts on the subject. This was always going to be Carol’s decision to make – whether anybody else had an opinion, or wanted to have any input, this was about Carol making her choices and everybody else accepting them. Selfishly for me this was also a huge relief - Carol would make these decisions which meant that I wouldn't have to.

When Carol asked me to start filling in the form it was surprising just how many decisions she’d already made. An Advanced Directive is an official document that needs countersigning by your GP but it can be re-written at any time so you’re always free to change your mind - but Carol’s mind was pretty well made up. The main point to note is that Carol had decided on a DNR statement – basically she did not want to be brought back or kept alive by machines. We had another discussion much later where this section was re-written with more detail on breathing apparatus but the principle remained the same – Carol clearly states no invasive support. Carol also made the decision about where she wanted to die – and that wasn’t to be at home. Carol requested Newquay Hospital, so the system today will confirm this as Carol’s choice and when the time comes all attempts will be made to fulfil this request.

An Advanced Directive goes into the system you see – that’s why it’s official and needs GP agreement. It becomes part of your medical records so if for example you dial 999 the paramedics / ambulance team can see on their screen that you’ve made your decisions on the care you will accept and they will treat you accordingly without questioning your instructions.

It’s one of those great debating subjects isn’t it – end of life – when you’re having those throw away conversations about such things they’re along the lines of “don’t keep me going if I’m on machines” or “don’t keep me going if I’m trapped in a body that doesn’t work”. But when it actually happens to you it’s a very different situation – and the answer isn’t simple. I know there are some days when Carol wishes it was over – but I also know there are more days when she doesn’t. Every new day that Carol spends with the family or friends pop round for a chat are the days that keep her spirits high and her mind occupied. Yes there are some dark days but these have to be dealt with in the same positive light as the good days – Carol’s smile will light up any room and even on the dark days we can still find it.  

       

March – May 2010 – Heartbreak For The Family - New Equipment Needed – A Family Wedding & More London Shows

March started as a quieter month except for the relentless progress. It’s interesting but there’s almost a double whammy when you move to new equipment. The wheelchair was now being used every time we went out, which meant Carol wasn’t walking around as much, which meant her legs became weaker more quickly! Similarly with the Litewriter – a communication aid that helped Carol to be understood, which meant she stopped trying to talk so much, which meant the throat became weaker……and on it goes.

It was time for more forward planning and I was looking towards the time when moving Carol around the house would become more difficult so we had an assessment for a powered wheelchair. We were also supplied with a moving belt and turntable, two of the simplest pieces of equipment I’d ever seen but they became priceless over the next few months. The belt wrapped around Carol’s torso and had loops for me to grip so that I could lift and hold Carol up. The turntable went under Carol’s feet so as she stood up I could turn her around as required – moving from wheelchair to chair / car seat / bed and vice versa – they went everywhere with us – I repeat priceless! Next to arrive was a commode, a just in case measure at that time for when Carol couldn’t use the toilet anymore. That was useful for wheeling Carol from the bedroom to the bathroom every day – remember we’re still upstairs at this point and Carol can still manage stairs taking them one at a time.

I planned another London trip for 19^th / 20^th March – back to the Novotel and back to see the Boys!! (That’s 3 so far if you’ve been keeping count). We took Bec with us this time as she’d not seen a London show before and we packed the weekend with a couple more – I was also now organised enough to ensure we had access seats for everything – it’s so much easier believe me. “Sister Act” was first up, which is one of Bec’s favourite films – it was great fun and there was Sheila Hancock too! Bec opened a bag of sweets all down the neck and back of the lady sat in front of her – thankfully she had a sense of humour! This was followed up by “Wicked” which I have to say we all really enjoyed – “The untold story of the witches of Oz” is very popular and it’s easy to see why. All of these shows are highly recommended if you’re looking for something to go and see.

At the end of March Annie was taken into hospital and it didn’t look good. Paul had been keeping us informed over the last few weeks and the deterioration had been swift. I still can’t help thinking that, from the very moment we had discussed Carol’s illness in detail with Annie, and explained there was no possibility of Carol recovering, there was a distinct change in her demeanour. She’d stopped going out, which was unheard of and had withdrawn into herself. There had been a number of minor health problems in recent years, and Annie was well into her 80’s by this point, but the change we saw in her when we got up to the hospital was startling. The doctors confirmed that there was now cancer, and Annie had a DNR request so it was just a matter of time. We spent 6 days sat by her hospital bed, 6 very draining days on an already weakened Carol - but thankfully Carol, Paul and I were with Annie as she passed away on 7^th April. The end was very peaceful but Carol was shattered, both mentally and physically, and as moving her around suddenly became even more difficult I realised those 6 days had also cost Carol a great deal in further loss of muscle strength.

I switched into the organiser role and made the calls to set-up the funeral. I also helped Paul to sort out all of Annie’s personal affects and talked him through what needed to be done with policies, finances and the like. Annie’s funeral was delayed until 22^nd April so Paul came back home with us while we waited for that date – Carol and Paul just needed to be together.

During those 2 weeks we arranged another OT assessment – this one was to discuss having a ramp fitted to the front of the house, as Carol’s powered wheelchair was due any day now and we couldn’t get it in and out without a ramp. That was a very smooth process and the ramp would be fitted before the end of the month.

We travelled back up for Annie’s funeral and as you would expect it was a very emotional day, Carol and Paul asked me to read the eulogy which they had written. It was also the day when Carol’s extended family got their first real glimpse of just how far she had progressed – and some of those conversations were even more emotional. Carol decided to stay up there with the family while I came home with the children – the next time we’d be together would be at Jim and Samm’s wedding in Doncaster!

May 1^st 2010 was the big day and me, Kyle and Bec had an early start from Cornwall. I'd been to a concert with Kyle in Penzance the night before so that was why we hadn't travelled up before. The plan was to meet at the venue for the wedding and it was going to be a good day. Just a small family gathering, the low key affair that Jim and Samm had wanted and everything went well. It really was a lovely day and it was hard to believe that our little boy was now all grown up. I’d not seen Carol for a few days so I was watching her very closely to see if anything had changed – that becomes the normal state of mind the longer you’re dealing with this disease, constantly looking for even the smallest change so you can react and deal with it. It might not suit everyone and makes it sound like I’m almost in a constant state of panic, looking for things that might not be there, but I must say it’s worked for me so far and it’s allowed us to keep one step ahead.

Doncaster is North just off the M1 – going South down the M1 you reach London so you can probably guess what diversion we took on the way home. Sunday matinee “Jersey Boys” - this time with Kyle and Bec – we were certainly doing our bit to spread the word!

Writing this down I realise now just what a busy period that actually was – the progression seemed to be accelarating, only minor changes but they were constantly occurring – and there would be even more to come over the next 2 months.

Annie & Margaret – Carol’s Mum(s)

You’ll have seen the names Annie and Margaret mentioned in earlier posts – these two wonderful ladies are Carol’s mum(s). Carol was adopted you see and for the majority of her life didn’t think about looking into how that came to be.

Carol recalls a very happy childhood with her brother Paul (also adopted) and parents George and Annie. They were Carol’s parents – plain and simple. They talked to Carol about being adopted when she was very young, and told her that finding her birth mother was always going to be her choice – but for many years Carol never considered looking. George unfortunately passed away in 1985, so I never had the chance to meet him.  Annie was a very special lady – she took great pride in herself, always very smart and elegant – but more importantly she was just a very caring, giving and loving mother and nana to us all. There are many stories that could be told about Annie that still make us all smile and her attitude to catering for your every need when you were in her house was legendary!

Carol spoke to Annie every day and, as we lived close by we saw her all the time before we moved. I’m sure the fact that Annie didn’t like to travel too far, so wasn’t a regular visitor to us in Cornwall is one of the two big regrets that Carol has had since our move. Yes they still spoke every day, and we visited / stayed with her whenever we were back with the family, but Carol felt that distance and I know it upset her.

That may have been just one of the many reasons that led Carol to starting to think about where she came from and what that story was. The adoption was organised by the church, which was the way it was done back then, so Carol wrote to them with a general enquiry. The letter Carol got back was quite a shock, her birth mother was a lady called Margaret and she had actually written to the church ten years previously asking about Carol and advising that she would like to know if Carol ever attempted to trace her. What followed was a series of letters - just writing and getting to know each other – and all of this was initially controlled by the church, before Carol decided to pick up the phone one day and ring Margaret to talk. Margaret remembers the call well – it took her completely by surprise as you can probably imagine. Without going into too much detail Margaret was very young when she became pregnant and, being from a staunch Catholic family was advised to give Carol up for adoption. Carol was taken away at around six months old and that was that. Throughout her life Margaret always thought about Carol and made a choice not to have any other children.

It turned out Margaret only lived about 15 miles from where Carol had lived and where we had spent our lives before the move – it’s a small world.  The day we all met was very emotional, but there was an immediate bond and a deep love would grow quickly between Carol and Margaret. There was a whole new family to meet over the next few weeks – aunties, uncles, cousins and so on – and we even met Carol’s biological dad, Brian. It really was a quite unique experience, one that’s difficult to put into words.

Here’s where the other big regret comes in – Carol was absolutely torn about whether or not to tell Annie about Margaret, and she ultimately decided not to. There were many factors in the decision, and we all had opinions, but Carol felt that finding Margaret, on the back of us moving away might cause too much upset for Annie. This was a decision that would cause Carol a great deal of heartache in the coming years and ultimately we’d wish that we’d handled it differently – regrets you see.

Whenever we’d visit the family we’d spend time with Margaret and Michael (her husband – Mike – coincidence eh!?) and we had some great times with them and the family. Our children knew who Margaret was, as we’d been honest with them, but Margaret was very clear that Annie was their nana - and Annie was Carol’s mum. I’ve always admired Margaret for that, and probably never told her. That can’t have been easy but as I said earlier Carol was blessed with two wonderful ladies she could call mum.

As you might expect Carol’s diagnosis was very hard on both Annie and Margaret, for similar but different reasons. Annie had raised Carol throughout her life and was now watching illness overtake her. Margaret had wondered about Carol for years and had only recently managed to find her – and was now watching illness overtake her. Life can indeed be very cruel.  

We kept this double life going for a long time, even when Carol was diagnosed we didn’t bring Annie and Margaret together. It would take the progression of Carol’s disease, during the latter period of 2009 and deterioration in Annie’s own health to make the decision for us. Ultimately Carol was worried about Annie and couldn’t face keeping the truth from her anymore. As we were so far away Carol’s cousin Maureen helped us break the news, and that was much appreciated. I suppose it was no real surprise that Annie was absolutely fine with hearing about Margaret. There are those regrets again – just what would have happened if we’d brought them together in those years before? Unfortunately we couldn’t second guess any of the decisions we’d made – we just had to live with them.

January 2010 was when Annie and Margaret eventually met – that was a very emotional meeting for all of us and it affected Carol deeply, although there was no doubt we all felt relieved as well. Annie’s health was now a real worry, I’m no expert but it was as if she could see what was happening to Carol and didn’t want to watch anymore. Over the next couple of months Annie would deteriorate quickly and this would also have a negative effect on Carol’s own health.       

January – February 2010 – New Equipment, Discovering the Best Show in the World….and a Night with The King!

Those early discussions we’d had with the various support people started to pay off as we moved forward in January. The mobility issues on trips of any distance during the holiday had made us realise that we needed a wheelchair. Carol was still able to use the wheeled walker, and move okay slowly around the house but outside it was a different matter. A request was raised but it wouldn’t arrive until early February - so in the meantime I hired one as we were heading back to London! We’d had to miss the earlier Billy Connolly show so I got tickets for another on 22^nd January, and as we’re travelling all that way we might as well make a weekend of it and go see a couple of other shows in the West End.

That raises another subject I’ve not touched upon yet – disability access rooms in hotels. Remember this was all new to us back then so each trip was a new learning experience and we’d stayed in just a couple of others by this time – including the infamous freezing Premier Inn near Luton. While working in London I’d stay at the Novotel in Hammersmith (just opposite the Apollo for convenience by the way) so I booked us in there. It has good access to the tube (there’s another steep learning curve if you have mobility issues!) and it was a nice hotel. Unfortunately though the disabled access rooms weren’t brilliant if I’m being honest – a deep bath for a start which, if you have the kind of physical challenges that Carol was starting to present, can make things quite difficult.

Anyway the Billy show was good – but nowhere near his best so I did leave a little disappointed. The Saturday we went into town for 2 shows – but getting there in a wheelchair was an experience and a taxi was £25 each way. Make sure you study the Underground map very carefully – it’s a joke on such an excellent network just how few stations there are that have wheelchair access. For the West End the station at Westminster is the easiest one to use – and that’s a fair walk.

Also, can someone please tell me why you become invisible when you’re in a wheelchair? It’s amazing but people just don’t see you – in those early days my stress levels were seriously high what with stopping and starting for people walking across your path or just bumping into the chair – and don’t get me started on those ignorant gits on the tube who sit in the designated wheelchair spaces and won’t move - it drove me mad as Carol will testify!!

We saw “The Lion King” first and Carol was blubbing throughout – you see it was James’ favourite film when he was young and Carol went to the pictures 5 times to see it with him, so it all came flooding back. A show well worth seeing, fantastic costumes with very cleverly operated animals and a great soundtrack. Carol transferred well from the wheelchair into the seat so there were no issues.

The next theatre gave us a problem as I wasn’t aware of “access seats” – we weren’t regular theatre goers at that time so it was news to me but these are seats specially reserved for people with mobility issues and they have to be requested through direct booking. The theatre staff were wonderful though, and so was Carol for making her way both down and back up the stairs we had to use to access the stalls area. I certainly wouldn’t be making that mistake again but when the show started all that was forgotten as it just absolutely blew us away (hence the post title above). I’d seen it was on in New York when we were there in 2006 but we didn’t find time to go – “Jersey Boys” is the story of Frankie Valli and the Four Seasons and it is the absolute must see – without doubt our favourite show ever and that certainly ended our trip on a high - we were already talking about going back to see it again. You can count in future posts just how many times we went back to see it. (I would also sneak in a couple of extra visits when I was back in London training – Carol was not impressed I was able to go without her!)

Back home life just carried on but we started to notice Carol’s voice and swallow change again so we needed to see the Speech Therapist (I told you she’d be back). The next assessment gave us instructions on choosing moist foods and thickening liquids – and so began our love affair with thickener – such lovely stuff. Initially we started with a scoop to 200mls fluid, but this would change within a couple of months to a scoop to 100mls – that’s progress but not the kind we wanted. Carol would soon need this adding to every liquid from tea and coffee to soup.

What this assessment also gave us was a new piece of equipment – a Litewriter. I’d never seen one before but quickly realised it was just what Carol needed – a machine that could talk for her, speaking the words that she’d type in using the keyboard. Needless to say the first words Carol programmed in cannot be repeated in this blog but caused great amusement in the house! When Carol did decide to use it properly it proved to be a great help – although some of the voices did make you nervous (especially Wendy - who sounds like Marge’s sisters in the Simpsons!). The Litewriter would be a great aid to communication for a number of months to come.
            

Carol went up North during February to stay with the family for a week and coming home we arranged for my mum and sister Elaine to bring her to meet me in Birmingham for a night with The King. It was the latest tour of the “Elvis Lives” show, which we had seen before but demands repeat visits. Elvis’ original TCB band play live on stage while huge screens show Elvis concert video recordings and his voice is heard over the music. It sounds like the corniest thing you’ll ever see – but I dare you to go – it’s fantastic! Our friends Tom and Jo came with us and really enjoyed themselves too and we stayed over afterwards in a Holiday Inn (disabled access room again – not too bad). On the way home we diverted down to London as I’d booked “JB” tickets again for the Sunday afternoon – Tom and Jo got to see what I’d been making such a fuss about all those weeks.

So a couple more months had passed – Carol’s progress seemed to have sped up somewhat but we had the equipment we needed and it was all under control – for now.   

New Year 2010 - Gran Canaria – Some Winter Sun

Those plans again – we were always talking about going away for Xmas or New Year – always talking about it but never doing it. You know how it is – “we can’t go as we’ve got to spend Xmas with the family” / “who’s turn is it to host at their house this year?” / “visitors are coming down for Xmas this year” – and on it goes.

New York - Times Square New Years’ Eve – watching that electronic ball drop as the clock counted down – that was on our “to do” list as something we were definitely going to do – at some point in time - yes those plans…..yes that list.

Anyway in early December we decided we were going to get some sun this year so onto Teletext I went – what a bloody joke that is, every holiday you ring up for has already gone! I spent hours trawling the internet, ringing the agents and booking holidays with them only to be told the seats on the plane had gone. Eventually, at the point of giving up, I managed to get a week in Puerto Rico, Gran Canaria – at least that’s somewhere we’d not been to before – flying out of Luton on 29^th December, coming back 4^th January – very nice thank you.

My Mum and Dad came down for Xmas and Jim and Samm cooked Xmas dinner – a jolly day was had by all but it was freezing outside. You may remember the cold weather that dropped on us – going away was looking like the right thing to do.

Carol was now using the wheeled walker with the seat, and that seat would become very useful for getting Carol around. I must say that the special assistance was excellent at both airports and they really helped us smoothly through passport control and onto the plane – and back off again at the other side. That was a completely new experience for us – it’s just not something you think about when you’re not dealing with mobility issues and the like. A designated team of people to help you personally – our experience was certainly a positive one.

It was 23C when we arrived – after leaving Luton in the freezing cold – just what we needed.

Puerto Rico is built around a valley and we were staying at the end of town furthest from the beach. I’d discussed Carol’s mobility issues with the booking agent and he’d advised there were some steps at the hotel but not too many - I remember….there were lots of steps!

Carol could still walk at this point but it was slow going and her right knee had developed a “locking” problem that was painful and made movement difficult – steps were still ok going up (one at a time) but not coming back down. There was a choice of steps or a ramp up to the front door and then steps or a lift to access the hotel reception and higher floors. We were on the second floor, one below the pool and reception. The steps outside our room going up to the pool provided Carol’s daily workout – and she managed really well throughout our stay – lounging by the pool was the main pastime, and that was just fine with us.

We did go out into town most days / evenings – Carol walked down the hill once (however the flight of 100+ steps was just too much) and we used taxi’s to take us around for the rest of the week. The beach was nice, with plenty of loungers to choose from and one day we endured a Chinese massage from two ladies who were frantically trying to avoid the beach security guards while fleecing people of their holiday money!! (I must admit it was a good massage though!).

I had a go at parascending off the back of a speedboat which was a great experience – we really wanted Carol to try it but just couldn’t risk the shore / boat / parachute transfers as she didn’t have the strength to support herself and stop any sudden movements. We did manage to get Carol onto a pleasure boat trip along the coast and that was an enjoyable day.

Carol was still able to talk at this point and I also remember her appetite was fine as well – no real problems with polishing off 20 McNuggets for example, or ploughing through ice cream at a rate of knots – things were still pretty good.

Watching New Year fireworks over the sea wearing just a pair of shorts at midnight – followed by sunbathing on the beach on New Years’ day in 26C heat - that was actually something we could now cross off that list – yes it really was a great holiday.

We left with the temperature at 23C and landed at Luton with the temperature at -3C – the UK had been frozen solid for the entire time we were away and the car was like an ice block. That night we stayed in a hotel just outside Luton – it was bitterly cold and we both slept in the clothes we’d come back in – welcome home indeed!!

The next day I was supposed to be training at work in London, and then going to see Billy Connolly at the Hammersmith Apollo that night. The day began with weather warnings and things were looking bleak – my training was cancelled first thing in the morning and everybody was advised not to go anywhere as more bad weather was forecast. We had to make a choice of staying in London and seeing the show or starting for home. Unfortunately I have to say Billy lost out – we raced back home with the weather closing in behind us. We made it back safely but that weather did arrive and the roads we’d just used to get home were closed the following day!

We didn’t know it then but things would start to progress quite rapidly for Carol from this point – the next few months would see lots of changes..…and they started almost immediately.