The Princess Alice

Blog 

He is well ensconced at the Hospice and has been there sinc Monday . Monday morning felt a bit fraught. Both of us were anxious. For the first time, I had to use the hoist to get him from toilet to shower seat, from shower seat to standing position.  I wanted him to have a decent breakfast, but we were up late and he was worried that eating too soon before leaving for the Hospice would precipitate a bowel movement on the way. He had a substantial if late breakfast at 10.30am and the plan was to call his taxi for 12.00pm but we were delayed by a number of toilet transfers - it may have been the anxiety. 

That was the other thing of course - he needs his motorised chair, hence the taxi.  There was some confusion about transport to get him there with his motorised chair.  Too late we realised we could have requested an ambulance from the Hospice and we ordered a taxi. I followed behind with all the necessaries. The list of requirements grows steadily (high on the list is Prosecco, beer and cigars. Somewhat ironically followed by nippy machine, rollator etc..

Eventually we got there - there was even a parking space for me in the Hospice Car park, which was pure luck. 

I was dismayed to find that he had been put on a ward. But what did we expect? It's not a hotel. Last time we were cushioned from the reality of the purpose of the place as he had his own room. 

As we sat there on Monday, it seemed that compared to his roommates, Roch seemed hale and hearty. It did bring it home to both of us. His nearest neighbour seemed close to the business of dying and across the room the third occupant was in a lot of pain. 

From behind the dividing curtain we listened as two kindly young nurses gave one gentleman a bed bath.  'Now, lets just freshen you up down there,' one cheerfully remarked as Roch sent me an agonised glance. I knew what he was thinking. 

How long until he is in the same position? 

He has met each challenge bravely, at every stage there are more barriers to overcome. There is no bio bidet at the hospice so I know how much he was dreading having to ask a nurse to wipe his bum. When we spoke on the phone on Monday evening, he told me that that challenge had now been faced. 

The staff there are wonderful and so kind and attentive. I stayed with Roch all afternoon and into the early evening, by which time he was more settled there, we had seen the doctor and every effort had been made to add to the comfort of his stay. 

There are advantages and disadvantages to a shared ward. One of the disadvantages for Roch's fellow patients, I felt, might be the stream of expletives which issue from him when he struggles to stand. I realised that we have become used to this at home (i think its his way of urging himself on and it seems to help) but in the quiet atmosphere of the Hospice it suddenly felt very 'Fr. Jack'. 'B*******! F***! S****!' 

However, the good news (for Roch and his former roommates) is that he has now been moved to his own room! I'm not sure for whose benefit this arrangement was made but we're happy with it! 

That was the week that was...

It’s hard to believe that this time last week we were well settled in to the Royal Brompton Hospital, for Roch’s overnight sleep study.  The week had been busier than usual, beginning with a call on Monday from MedEquip, to arrange a suitable time for them to move our bed. A relatively simple task, I would have thought. I was confident that Jenny, our occupational therapist from Richmond Neuro Rehab, would have explained the purpose and details of the task to be performed, but I took the liberty of explaining again over the phone, just to make sure. An arrangement was made for Wednesday, between 10am-4pm. Later, Shelley, the occupational therapist from Richmond Council, popped in to have a chat about the riser/recliner chair, which no longer does its job, unfortunately. It has served him well, but he just can’t get himself out of it any more. It’s a very comfy place for him to sit with his legs elevated (this helps the cold feet) and it’s a popular seat with all the family, including Oscar the cat (!) but Roch feels like a prisoner in it now (see blog passim). He prefers to sit in his motorised wheelchair, as he can still just about raise himself up from this to grab his rollator and take a few steps. Shelley has promised to think about it and may be able to find a suitable alternative, so we’ll wait and see.

We also did a bit of planning ahead with her, as transfers generally are becoming more problematic.  Some time ago, we met with Shelley and discussed the dreaded commode issue. Measurements were taken, so that any future commode type chair could be wheeled over the existing bio bidet seat. We are not quite there yet, but agreed with Shelley that the time has come to order it so that we have it in reserve for when that day comes. Not a happy thought and not a day that Roch is looking forward to, but being prepared has helped us so far so it seems sensible to continue to plan ahead.

After Shelley, we had a visit from Donna, our lovely Hospice Nurse, to discuss the next Hospice stay and Roch's changing needs and requirements. Roch goes into the Hospice on 11th February for a week while I go to Dublin to visit family.

Tuesday

 I was concerned that Roch wouldn’t be well enough to go in to hospital for the sleep study, as he had a cold. But at our visit to the neurologist at the West Mid on Tuesday 29th, I asked her to listen to his chest and she assured us that his chest was clear and a head cold shouldn’t make any difference.  Our visits to the West Mid are usually pretty gloomy and contrast sharply with our experience of appointments at King’s College. As Roch says, at the West Mid they usually ‘chart his decline’ and we come away with uninspiring comments such as ‘stay positive’ and ‘every case is unique’ echoing emptily in our ears. This time, our appointment felt different. Maybe the doctor was having a better day, maybe we’re more comfortable with each other, whatever the reason, she seemed to listen more effectively and didn’t seem rushed. (I’m liking her better ever since we received our copy of her letter to the GP following the last appointment, which began, “Mr. Maher attended with his very supportive wife…”!  
On Tuesday, she answered our questions confidently and a few interesting points came up. She confirmed that the tongue tremor is associated with bulbar symptoms but I reminded her that Professor Al-Chalabi had told us he noted this very early on and told us that it hadn’t got any worse. She agreed, and confirmed that there was no associated deterioration = good news.

She was very good and informative on the prolonged use of lorazepam, for anxiety – Roch takes a very low dose at night at present but our local pharmacist, ever vigilant, often casts an admonishing glance and warns of its addictive properties. Our neurologist was reassuring and advised that in such low doses, there was no need to worry but that it would be wise to bear in mind the fact that it is, in fact, a muscle relaxant, which, in larger doses could be counter-productive. Later, if necessary, anti-depressants and sessions with a clinical psychologist would be more effective to combat future night horrors.

The neurology clinic generally runs about 30 minutes late, which isn’t so bad, really, if you’re prepared for it. This time the hospital car park was so full, that having driven round three times looking for a space, I had to let Roch and his PA David out so that David could bring him in on time. I continued to drive around for a good ten minutes and eventually found a space. Until we get our motability car with ramp access, we have to take the manual wheelchair with us and a helper, as Roch can’t get from this back into the car, even with my help. It takes two to do it. Our lease for the Citroen is up in May and we’ve got to get going on organising better transport for ourselves so that we can go out together and Roch can be a bit more independent when we do. Otherwise we’re relying on taxis (usually Computer Cabs, using Roch’s taxi card, and they are just not reliable enough.

Wednesday

Wednesday brought the expected visit from MedEquip with disappointing results. The person who came had clearly not been briefed for the task. We knew we were on a loser when he looked round the room with a puzzled air and asked where the hospital bed was. I explained again that the bed needed to be unscrewed from the floor and moved across the room to give Roch more space on his side, for wheelchair and hoist, then fixed to the floor again. This was not the brief he had been given. He said that that was a two man job and he didn’t have any measurements. I offered to check the measurements with the OT but he said he wouldn’t be able to accept these from me – they would have to come through the office. Great. He said there was no possible way the job could be done that day but when I explained that Roch and I would be in hospital for the next two days, he called the office before he left. Later, the office contacted me and arranged to send someone early the next day, before we left for the Royal Brompton. This was a relief, as I was keen to have the adjustments made before the weekend and organised for our return from the Royal Brompton sleep study.

Thursday

On Thursday morning, a different individual from MedEquip arrived, fully briefed. So, I thought it was a two man job? He explained that his colleague from the day before had a bad back and so for him, it would have been a two man job. Okay. Fair enough. This guy had called the person who had built and installed the custom made bed risers and knew exactly what to do to unfix them, move the bed and screw it all down again. Job done. Of course you’d need to be Louis Smith to vault your way into my side of the bed, but there you go – keeps me nimble…

So off we went by taxi to the Royal Brompton for our overnight stay. This time, we had the NIV machine (non-invasive ventilation machine) with us, known within the MND Confraternity as –the nippy. We were greeted by the same nurse who settled us in the last time and shown to Sleep Lab 1, where we would spend the night. The usual forms had to be filled in, breathing tests done and the dreaded blood sample taken. This has to be from the ear or wrist as the blood has to be taken from an artery. There was no doctor available to take blood from the wrist so the poor ear was mutilated again. This blood test shows the oxygen/CO2 levels. They were happy with the reading and Roch’s breathing test showed a forced vital capacity of 87%, down 10% from the reading taken in November. Still good however, and it’s possible that the head cold may have affected the results. We were told that they needed him to use the nippy for half the night (up to 2am), and they would then compare that result with results for the second part of the night with no assisted breathing. Any hope of sleeping before 2am went out the window at that point. Speaking of windows, the room was almost unbearably hot, so we had to keep the window open all the time, and the door ajar until we were actually going to bed.  The problem with keeping the door open was that this was seen as an invitation to the restless patient next door, who was unaccompanied and very chatty. Roch’s polite silence did nothing to deter her and the fact that the nursing staff disappeared later in the evening to the High Dependency Ward (very understandably) meant she had nobody else to talk to.

However once my bed had been organised, and the door closed behind us, we were assured our privacy, although the room became very hot indeed. The nippy went on shortly after 9pm, but as it was a full face mask, it made reading difficult for him. The alarm went off a couple of times, and I adjusted the tubing. The readings were unaffected by this, but I was told next day that a particular piece should really have been attached to the mask end, which would have made leaks much less likely. What a cringe making moment that was. However, as I say, the readings were unaffected although we were jolted from our dozing states more than once in the final hour by the beeping noise. At 2am I detached it all and by 2.30am I’d say we were both asleep – only to be woken at 6.30am by the nurse coming to detach Roch from the machine measuring his oxygen, CO2 levels, and heartbeat. There wasn’t much space for her to move around so she managed, poor thing, to stumble over the wheelchair and deliver a sturdy kick to the end of my foldaway bed as she tripped on her way out. If I wasn’t fully awake already, that surely did the trick.

After breakfast (I was rather summarily summoned by a dapper gentleman to the ward kitchen area to collect our food, which, may I say, was pretty unappetising), the Senior Registrar came round at 9.30am with the results – which are encouraging. Roch’s CO2 levels were slightly higher without the nippy but not worryingly so. Her advice is to use the machine more during the day, as we had begun to do, but to also try to get used to it at night time, just using it for a couple of hours. She very sensibly pointed out that lethargy and lack of energy during the day could very well be down to reduced oxygen levels overnight. She stressed that at present there is no pressing need to use it at night but best to get used to it before its use becomes a necessity. She felt that Roch was doing really well. With regard to the tired voice and slight breathlessness he experiences at times, she thought having a chat with the speech therapist might help – to learn strategies for breathing whilst talking. Happily, he now has a much more practical and useful mask, with nasal ‘pillows’, instead of a full face mask, which means he can read and watch television whilst using the nippy. My next task will be to train his PAs in setting it all up for him.

I have to say, it’s not unpleasant being at the Royal Brompton for a sleep study (I say that as a Carer – Roch may have a different take on it) – the staff are helpful and friendly and it felt quite restful at times, just the two of us, quietly reading and chatting. I sent a text to Tom and Maura on arrival which read:

“Arrived safely for our romantic evening in the heart of Chelsea. Quiet, well-appointed room, very attentive staff…”

 I could have settled him in and gone home, but it works out so much better if I’m there – there are so many little requests he has to make, so many things he can’t do for himself. I bet the nursing staff are quite happy to have a carer there, although I have no doubt the nurses would be on hand if he needed them. But it’s so much nicer for him to have me to do it and not to have to bother them. There was only one slightly awkward moment involving a commode, what looked like a cardboard cowboy hat and a nurse whose first language wasn’t English, but we got through that pretty efficiently, I thought!

We arrived home before midday on Friday and went straight to bed where I slipped into a blissfully undisturbed sleep until teatime.  We slept well on Friday night, which set me up nicely for my two weekend shifts in work!

And that was the week that was.

 

 

 

 

 

Ladies who lunch

On Monday, I had lunch with a fellow MND wife. It's been some time since we met up and she was struck by how well Roch is doing, how slow his rate of deterioration compared to her husband's faster decline. This gave Roch and me food for thought. I was shocked to hear how her husband's condition has worsened in a relatively short space of time.  I  am so glad we met up but it's impossible not to feel close to overwhelmed by the vision of the future that she presented to me. It's best not to look too far ahead, perhaps. I am so grateful that Roch and I have been granted time to adjust to the changes, the losses. They have not been so lucky. A question I think many MND Carers must ask themselves is "Have we reached the 'messy' part yet?"  I completely related to her when my luncheon companion expressed this thought. She thinks they have. I think we are not there yet.
Over our cosy pub lunch, by a roaring fire she and I covered many MND topics. PEG feeding, nose twizzling, cold feet and venting; frozen shoulders, back strain, dry skin and grieving. We talked about our shared experiences, the many frustrations in our daily lives as Carers - we puzzled over how to resolve our feelings as wives/partners thrust into the roles of nurse, carer, babysitter, the constant demands on your time and what it does to your relationship. We talked about our children and how to resolve the conflict of prioritising their needs. We talked about what we needed to survive and how to go about getting it.

When Roch was diagnosed, a good friend said to me "It hasn't started for you yet." I was angry - of course it has started I thought, as I saw all my hopes and dreams for our future together come crashing down around my ears. But I know what she meant. I think I did even then. She meant, we haven't reached the 'messy' part. When he can't speak or move at all, when you have to do absolutely everything for him. When he quite literally can't lift  a finger. We are still on our way, but we haven't got there yet. Meeting my fellow MND wife made me realise that. We are lucky.
We haven't reached the 'messy' part.
So, January still sucks but it could be a whole lot worse.

In the Bleak Midwinter

He's housebound in the snowy weather but the snow will pass. Being unable to stand up from his riser/recliner chair makes him more of a prisoner. We're using the hoist now to transfer from riser/recliner to wheelchair. This means planning and more of a routine at bedtime, as he needs help to undress, take his tablets, go to the toilet and with fixing the pillows and bedcovers. He can't pull the covers up over himself any more. It also means earlier bedtime when I'm working the next day, which I don't like to impose on him, but is absolutely necessary to ensure I get enough sleep to function in work and at home.  When he's settled, I get myself ready, lock up, make sure to batten down the hatches and go to bed. When I turn off my light, that's his cue to turn off his bedside light ( he uses the environmental controls for this) and start reading his kindle with its special light attached. I put on my eye mask and with any luck I'm asleep in minutes.
The arms are weaker and he's not using the rollator to move around downstairs as much - only a few steps into the bedroom now. We should have a visit from Medequip this week. We need the bed to be unfixed from the floor and moved so that there's enough room on his side for the hoist. Standing up from the bed is shortly going to be impossible for him. As it is, it's a huge struggle. Determined to keep our bed for as long as we can, it's been raised and fixed to the floor, a bed rail fitted on his side, sliding sheet provided for turning and once there's room for the hoist, I believe we've done all we can to stave off the inevitable.
Eating is a tiring business for him and although I cut up his food, when necessary (or Tom does), he won't permit feeding, even though I imagine the food gets cold on the plate sometimes and simply raising the fork to his mouth can be a struggle.
I've noticed that his voice sounds tired on occasion but it could be nothing - he can still talk, swallow, breath. We are ever watchful for signs of new deterioration.
The next sleep study is coming up. The last time was August 2011 - the night of the riots, in fact! It will be interesting to see if there has been a significant change in his breathing at night.
It gets harder to remain positive and impossible not to share with him a feeling that the walls are closing in on him, on us as the ruthless march of ALS continues and the insidious simian hold of the Monkey strengthens.
But then, January always sucks.

Now, Voyager (and I don't mean Star Trek)

My loyal Blog-followers, let me reassure you that Roch is well and our MND voyage of discovery continues. My absence from Blog-land has really been more about a feeling of inertia on my part.  It has been incredibly difficult to get into the right mindset. I don't even know what that is! Following some kind of nasty virus mid-December I seem to have struggled to reach my former energy levels and still a kind of grey tiredness - most consistent with this dreary time of year - envelopes me. However, I will not neglect you any longer and I am pleased to say that I have received some requests for an update - I cannot disappoint.

There have been some changes of late. We are finding that the riser/recliner chair no longer serves to raise Roch from a seated position to a standing posture. I think it's because his arms have lost some strength lately, so he is spending more time in his motorised wheelchair, because he can manage to raise himself from this more easily.  At some point every evening, he may transfer to the chair, but if he wishes to leave the chair for any reason, we have to use the standing hoist. Tom and I can manage between us, without the hoist, but my back acts up sometimes so really, it's more sensible to use the hoist. If it's just Roch and me, and he needs to pee, then sometimes I just produce the Lenor bottle and he doesn't have to stand at all! We have that down to a fine art.

One thing he has been concerned about is the fact that he is experiencing some facial twitching. It's not something I've noticed, but he feels it happening quite frequently. We emailed Professor Al-Chalabi, who says it could be the motor neurones in the face, but could equally be down to stress/tiredness. So we'll have to wait and see.
He can still zoom in the chair over to the back door, stand up by himself and smoke a cigar on the raised platform outside - although lighting it himself can be a problem - so we often enact a kind of tender Paul Henreid/Bette Davis scene (although I only light one cigar) in the kitchen of  a morning.

The PAs are working out okay, although I have to say working with Roch it's a bit like Laurel and Hardy at times (not sure who's who - sorry guys). In all the essentials, they are working out well and we are grateful.
Roch has been to several football matches, which is a great achievement, mostly Brentford, but last weekend he went to a QPR match with best friend of old (and our Best Man) Seosaimh O'B , and one of Roch's PA's, Christian, who is a great QPR fan. I believe it was a terrible match, but they had a good time all the same.
Seosaimh was visiting for a few days and of course Kate has been home these past few weeks for Christmas and New Year, and last Friday we all headed off to see The Hobbit, at the Odeon in Kingston, then went for pizza. It was a great day and really, I am getting so used to doing all these things with Roch in the wheelchair that it hardly impacts at all. His right arm is much weaker now and the left is not much better, but he is still able to eat by himself, I just have to cut up his food more often now.

So how did we get over the Christmas, as they say at home? Well, it wasn't plain sailing this year, for me. I felt it was more of a struggle, although it began well, with the annual Christmas party. All his brothers and sisters were there. My brother and sister came (as always, Maura comes a few days in advance to help out with preparations). One of Roch's brothers told me he thought it went more smoothly than other years. I think that's probably true - it was less chaotic I think because fewer people came (although there were at least 50 here) but also because I have it down to a fine art now. There didn't seem to be as much to do! Lots of friends and neighbours came - to quote a certain Wizard, it was "Quite a merry gathering."

It was after the party that things started to go downhill for me - I went down with some mystery virus the following week, dragged myself into work for a shift, then came home and took to my bed. Naturally I kindly passed this on to Roch, which meant that no sooner was the worst of it over for me, than Roch was feeling dreadful. So it felt like a real struggle coming up to Christmas. Thanks to helpful neighbours, internet shopping and with the assistance of Kate and Tom, we managed to arrive at Christmas Day pretty well prepared, although still somewhat under the weather. I have a terrible tendency to do too much too soon so that probably didn't help.

This is the first year that Roch sat in his wheelchair with a tray (which is how he usually eats his meals at home) beside, rather than at his place at the dinner table for the Christmas feast. So that felt a little bit different, but thank God he was able to enjoy his food and have a drink with us.
We were a bit dubious about leaving him on Christmas morning, to go to Christmas Day Mass, but he assured us he would be fine, so we left him in his wheelchair with his I-pad, sending Christmas messages to all and sundry. I had my phone on mute in case he called. He promised me that he wouldn't get out of the chair while we were gone. When we got back, it was pancakes and buck's fizz all round - then the present opening began.

I really had to think hard about presents for Roch - he has an I-pad, a Kindle (he can't hold books anymore), a coffee machine, a telescope! I went for practicality and struck gold with two of my presents which he is using all the time now.
The first is a shower radio - showering can take a while, and I'm really pleased that he enjoys being able to listen to his favourite radio station every morning  while the washing process is taking place.
The second is a footwarmer with a removeable fleece lining and 6 temperature settings! The feet go in every evening and his feet are warmed right up, past the ankle. I've heard other MND Carers say that the people they look after have this problem - Roch finds this really effective. It helps that he can control the settings himself.
The best thing about these gifts is the fact that they weren't expensive - a fact which Roch really appreciates as he's a great man for a bargain!

 I just love Christmas. This is the fourth Christmas since diagnosis and we have been so lucky. Neither of us expected to make it this far with him so well. Every year brings changes and we are all adapting to these. I try to create a Christmas that's not so different from the years before MND and I know that will get harder to achieve. Celebrating together is the thing, I guess - all the rest is incidental, really. "Don't let's ask for the moon. We have the stars."

Don't they say that New Year Resolutions are made to be broken? In that case, I won't make a resolution to Blog more frequently. I'll just do it. 

Alistair Banks

I was saddened by news of the death of Alistair Banks, who was living with MND. His was the face of the MND Association's Incurable Optimism campaign from 2011. I had the pleasure of meeting him only once, at a Reception in Westminster to mark the exhibition of paintings created by another Incurable Optimist, Patrick Joyce. www.patricktheoptimist.org/

Alistair was 40 and was diagnosed three years ago. He was married, with two young children.  A talented musician, he wrote and recorded an album before MND stopped him from making music. 

Our thoughts are with his wife and family.


http://www.youtube.com/watch?v=bqbnU5lPP_Y&feature=youtube_gdata_player

The Team approach - and some calculations...

The care of a person living with MND involves a multi-disciplinary approach. That's what they told us at the beginning and in recent weeks, we have had numerous appointments with various members of Team Roch to prove the point.  We have calculated that the members of Team Roch now number 20 - this includes Christian and David, his two personal assistants, but excludes immediate and extended family members. I don't know how many people are on Team Andy Murray, but I would be surprised if their numbers could rival Team Roch.

As you see from recent posts, we've had contact with Occupational Therapist Shelley, from Richmond Social Services - who provided the hoist, an appointment with Neurology at the West Middlesex Hospital (more anon), and back to back appointments at Richmond Neuro Rehab Centre with Shahid (podiatrist) to discuss the fashioning of a splint for the errant big toe (Roch likes to say this has 'declared independence from the rest of his body') which he can no longer raise, thus making it practically impossible to put on his shoe, Amber (physiotherapist) about the shoulder socket pain and neck discomfort, Mary (nutritionist) about weight loss and diet. Jenny (OT from Richmond NRC) came to visit us at home. Amongst other things, we discussed with her the shoulder socket pain and whether this could be alleviated by a softer mattress topper. This poses its own problems, as it could make it even more difficult for Roch to turn in bed (already problematic) and it would have to be a single mattress, as a double wouldn't fit our kingsize bed. A single will be too big (I can just see myself with two inches of bed to myself, clinging on for dear life), but we discussed the possibility of tucking it in more on his side. We'll see how it goes. We don't need the hospital bed just yet and want to hold out against it for as long as possible. That will be a real turning point - getting rid of our double bed. But it's not happening yet.

Amber and Mary usually come to see us at home, but as Shahid needed to use some equipment in order to customize the splint, we agreed to go along to the Rehab Unit in Evelyn Road ourselves, as we used to do in Roch's more able days, and see everyone there. It proved exhausting for him and I couldn't help remembering the days when he could walk (albeit slowly) with the aid of sticks from Evelyn Road to a coffee shop on the Richmond road, where we enjoyed many a cosy chat. This time, despite his weariness, I rolled him along to have a snack there, as before. But there was a sense that the outing had taken too much out of him and it was a relief to get back home.

The most significant appointment was our meeting with Professor Al-Chalabi at King's College Hospital last Thursday. This time friend Gerry volunteered to drive us there. This offer was a Godsend as it meant I could relax, leave the stressful drive to someone else and concentrate completely on our appointment. (Hospital transport is available, but only for Roch, which means we can't travel together, and synchronising our arrival both to the hospital in Denmark Hill and home again makes the whole experience rather too stressful).
Although Professor Al-Chalabi cannot give us good news (we don't expect this), his professional expertise, the depth of his knowledge, coupled with the respect, space and time he gives to Roch, always makes visits to his clinic worthwhile. You do feel safe in his care. Although this visit left us a little bit more emotionally bedraggled.
He told us that he judges Roch to be in Stage 3 of the disease. We were somewhat puzzled by this, as he hadn't mentioned stages before. He explained that there were 4 Stages, Stage 4 being the final stage. This was a bit of a sickener, actually.  He followed it up with telling us that by his reckoning, being in Stage 3, Roch has travelled 60% of the journey. I felt myself pale, and a chill went right through me.  For some reason it all suddenly felt horribly real. I actually had no idea we had travelled so far. Of course we had noticed his deterioration over recent months but I had somehow succeeded in deluding myself into thinking that we weren't really that far along the way. We made some calculations as Gerry drove us home - if he had the first symptoms in - let's say December 2007, and that's five years ago - and that's 60% of the journey - well, I'll leave you to do the Maths yourself. On the surface we were all businesslike and brisk about it, but underneath I know I felt gut punched.

Roch asked Professor Al-Chalabi how likely it was that he would die still retaining the power of speech. His answer was clear - if the diaphragm muscles go first, there's a higher probability that speech will be retained to the end - if the throat and mouth muscles go first - well, you get the picture. It makes sense. I guess now we wait and see. There are no guarantees.

What we like about Professor Al-Chalabi is the fact that he answers our questions directly. That suits us. No doubt he tailors his approach to suit individual patients. But at least you get answers in a sea of uncertainty. At the West Middlesex they do their best, but their best is to monitor his decline and we are lucky if we come away with more than an admonition to 'stay positive'. Yes, well. That's easy for them to say, and as a matter of fact, I think we do pretty well most of the time. Lately it's been feeling a bit more difficult, but we've had blows before and we've recovered from them. A good antidote is planning for pleasure, I find, and with Christmas just around the corner, there will be plenty of opportunities for partying and good cheer. Now if we've come through 60% of our remaining Christmases, and that was five Christmases - how many Christmases are left?