In New York

In New York

Wednesday, 21 January 2015

Dying Without a Voice

Dying Without a Voice

On the 27th January, the All-Party Parliamentary Group (APPG) on motor neurone disease (MND) will launch a new report into access to communication equipment for people living with MND. What the MND Association say:

“We expect the report to show the shocking truth: people with MND are dying without a voice.”

What they are asking us to do:

“Please join our online flash mob and help us make a lot of noise about this issue. This online flash mob will help us raise awareness of MND by harnessing the power of Twitter and Facebook, sharing the same message with lots of people, all at once.The more people who sign up, the louder our MND voice will be!”

I signed up today. This campaign has got me thinking. It’s not just about communication at home and in social situations. So many MND patients in hospital are being failed by the NHS, because when they are admitted, they don’t have access to the technology which will allow their thoughts, wishes and feelings to be communicated to staff. Think of when you are in hospital, perhaps unable to leave the bed unaided, all you have to do is press the bell for a nurse to come and you can tell him/her what the problem is, what help you need, how distressed you are feeling, that you need more pain relief or that you need to go to the toilet. The MND patient without a voice must rely on his/her carers for this and even then, they may get it wrong, or they may not be there. 

Please sign up and add your voice.

Roch's Voice

It’s got me thinking, too, about Roch’s voice. He can still speak after five years with MND. He may die and still have his voice at the end, but there are no guarantees. We both fear a day when he can no longer speak.  I have lost count of the number of family carers who have told me that the worst loss for them was when their relative lost the power of speech. One woman, whose partner is living with MND told me,

“We have to argue via email!” Another, five years after the loss of her husband to MND, had tears in her eyes when she said,

 “It was dreadful when I knew I would never hear his voice again.”

When I was pregnant, Roch got into the habit of reading aloud to me at bedtime. In the early hours of labour with both Kate and Tom, he read to me to distract me. We continued this reading habit for years and nothing delighted the children more than when Daddy read to them.  Sometimes his chosen reading material would be the book he was currently reading himself, which more often than not would send them off to sleep in minutes! However, he did read ‘The Lord of The Rings’ to Kate when she was nine, thus happily fostering a life-long passion for Tolkien. Tom, I remember was the lucky auditor of ‘Ender’s Game’ by Orson Scott Card (which recently made it onto the big screen). Beatrix Potter had had her day by then.

Recently, Roch has begun to read to me again a little at night, but only if his voice isn’t too tired. He doesn’t like anyone to read to him, although I have offered. I think it’s a bit of struggle for him to speak with the ventilator mask on but I’m usually asleep fairly soon (especially if it’s American Civil War memoirs). We’re just trying to make the most of his voice, while he can use it.
If he does lose his voice, we hope that he will have access to the new Eyegaze technology so that he will still be able to communicate. I know he fears an admission to hospital sometime in the future, bereft of communication devices, unable to speak. 

Timing is crucial in MND. There can be a six week delay in receiving communication equipment. That could mean dying without a voice. So this campaign means a lot to us.

Please sign up and add your voice, too. 

Tuesday, 30 December 2014

"The Times They are a-Changin'..."

"The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
Your old road is
Rapidly fadin'.
And the first one now
Will later be last
For the times they are a changin'."

Bob Dylan

"The times they are a-changin". That's what the song says and it's a line I  find repeating in my head.

No more attempts to walk in the hoist. The plate, which for so long lay in wait underneath the bed has been dusted off and attached at last and now he is wheeled around in state. The walking is over. It's dispiriting for him. It's a big change. I'm finding the adjustment difficult myself. Like feeding him. That's a big adjustment too.

Telephone conversations for him are increasingly stressful. I find it frustrating on his behalf. People don't understand how it is for him.  So I have decided to set out some handy guidelines. Before I start, please don't be offended. You weren't to know, but having read this, you will:

1. He needs to pause for breath. Don't rush to fill the silence. He may not have finished expressing his thought.

2. Please, please don't interrupt him or talk over him. He will just give up. You will never hear what he wanted to say and he will never get to say it.

3. It's tiring for him. If its not too much trouble for you, plan a little. Don't fill the conversation with meaningless small talk. He doesn't have the time or the energy. What do you want to say to him? Say it. If it happens to be meaningless small talk - fine - but don't start with it if you really called to say something important. You won't get to that. 

4. Group calls can work, but only if one person speaks at a time and please don't all talk together or shout to him from the background. It's confusing and tiring for him and it makes him feel worse. It's different now. It's all different now. You've got to adjust to the changes too. 


Christmas morning pancakes with Tom.

We did our best with Christmas, a valiant attempt to produce something more than the ghost of Christmas past. Oh we put a brave face on it and there were some fun moments.  But this year I fought constantly against a rising tide of sadness. The ghost of Christmas future rises to haunt me, all the more sinister for his nebulous form.

Roch sits in his riser/recliner in the midst of our lovely Christmas decorations, twinkling lights and sparkly baubles, the centre of our family celebrations.Christmas dinner (his favourite meal) was fed to him for the first time this year. The children are marvellous and feed their father with grace  and good humour. How can it not affect them? There have been some tears shed this Christmas as the shadows lengthen but always my magnificent, brave, beautiful children shoulder their burden again and like the good little pilgrims they are, continue their journey alongside us. 

We did wrap his presents although he cannot unwrap them without extreme difficulty. But he wanted to try to unwrap them himself. He tore feebly at each gift and with some assistance managed to open each one. It tired him out.

Kate and I made it to Christmas Day Mass and I was pleased. I haven't been to Mass in a while.  For the second year, Tom chose to stay with his Dad and we returned to find Roch showered, dressed and ready for the day.I couldn't help thinking of years gone by when we would both be busy in the kitchen preparing the food and toasting each other with the traditional sweet sherry, served in the Waterford crystal sherry glasses which were Wedding presents. The sherry was absent this year as I was hit with a migraine on Christmas Eve and my head was more than delicate on Christmas Day. But there were toasts aplenty.

Christmas Rose 'A Christmas Carol'.

The sun shone on my Christmas rose which bloomed beautifully for me, we were all four of us together and able to share our Christmas feast and the pile of presents on our Christmas table could not but gladden the heart! As Jo March famously remarked "Christmas won't be Christmas without any presents!"

Christmas wouldn't be Christmas without any presents...
Buck's Fizz!
Family S-Elfie!

St. Stephen's Day (Boxing Day to our UK cousins) brought its own excitement. Brentford played Ipswich Town at home and thus presented us with an unmissable opportunity to meet the great Mick McCarthy,  Tom's hero since the 2002 World Cup, when as The Republic of Ireland manager, he brought the lads to the last 16.I wrote to the club in October and they made contact with me last month. Yes, Mick would be delighted to meet Tom and Roch if at all possible, on the day of the match. The secret was kept until match day dawned.Well, Ipswich made short work of Brentford but I didn't begrudge them their win. The teams were on the pitch, the match about to begin, when the familiar tall  figure emerged from the tunnel. He walked along the side of the pitch by the disabled supporters' section, searching the crowd...I stood up and waved and over he came. A perfect gentleman, he greeted us with handshakes all round and I swear it made Tom's Christmas.Now there's a memory to cherish and I guess every MND family carer out there will relate to that, because we are the memory makers -  wives, partners, mothers, sons and daughters. Making what's left of it a life worth living and storing up a treasure trove of memories to glow for us in the dark days ahead. Thanks to Mick McCarthy and to Val at Ipswich Town FC, who did her best to make sure it happened.

Tuesday, 16 December 2014


Here I publish a post written last month. I thought about changing it, you know, updating it but then I thought - this is how it was last month and how I felt. I wasn't sure about publishing the post then, mainly because Tom was still at Uni and I hadn't had a chance to talk to him about the hospital visits. So it sat on the back burner until now. Roch and I travelled down to Southampton last Friday to bring Tom home for Christmas, One small update I will share with you - the antidepressants seem to have kicked in and Roch's mood is better. Anyway - here's November's post.

Happy Birthday to Roch!

A Busy Month

November is always a good month in our house, with my birthday at the beginning of the month and Roch’s at the end. It’s a month that begins with celebrations and presents and ends in the same way, but with the added anticipation of knowing Christmas is just around the corner. The year is dying and yet for me, there’s something lovely about watching the falling leaves swirl around our garden, even when the shrubs and birch are dripping and sodden. I love to go outside in the morning and fill the bird feeder, then when Roch is up and having his espresso and naughty cigar, we can watch the avian activity from the warmth and brightness of the kitchen. After the ritual of the first bolus flush, fortisip and tablets and before the Qufora and increasingly exhausting business of showering and dressing, this is a time when we can feel like a normal couple, enjoying our morning coffee together.This November has been especially busy. Apart from the birthdays, we have had two key appointments with our two favourite consultants.

Royal Brompton Visit 18/11/14

“I saw you on the telly!” Said one nurse, as she accompanied Roch for his lung capacity test. Quite the celebrity then. Professor Polkey explained that he had missed the programme himself, but had heard about Roch’s television appearance and described Roch as ‘an inspiration’. Always nice to hear.Blood gases were good but lung capacity is down since last time. A not unexpected result, but what Roch was keen to discuss with the Professor was his constant fatigue and frequent episodes of breathlessness, which occur when not on the ventilator. Did the ventilator settings need to be changed? Professor Polkey was clear about this. No, he explained. The settings are okay – but the symptoms of the disease are worse and now it’s about managing those symptoms. The lungs are fine but the muscles are letting Roch down. It’s getting more and more difficult for him to breathe unaided. He suggested a sleep study but Roch said no, not at the moment – he just felt he couldn’t face it. I watched as Professor Polkey placed a hand gently over Roch’s hand, where it rested on the arm of his wheelchair and said,“If I may say – when time is limited – you must do the things that you wish to do."He suggested a sleep study in March but I don’t think it will tell us anything we don’t already know.We were lucky that Roch had an appointment the following week with Professor Al Chalabi at King’s College Hospital. There were two issues Roch was keen to discuss with him. One was the issue of fatigue, the other – predicting his prognosis – or in other words, life expectancy.

King’s College Hospital 27/11/14

Roch explained that he is much more tired than he used to be and that he also has reduced concentration at times. Professor Al Chalabi was unsurprised by his level of fatigue.“Sometimes I just sit in my chair doing nothing and I’m still exhausted,” Roch told him.The effort of simply holding his trunk upright in the chair, of lifting a hand for a handshake – of every voluntary movement in fact – is tremendous for Roch now, explained Professor Al Chalabi. Roch may feel like he’s not doing anything to induce fatigue, but the remaining active muscles are working overtime to compensate for the loss of their fellows and to allow even the reduced movement he has left. It’s very tiring.He also said that another cause of fatigue and reduced concentration is low mood and he asked Roch about this. He suggested that depression might be an issue and Roch agreed.


Having established that this was a conversation Roch wanted to have and that we both understood the limitations of the methods of calculation; that they would not give anything other than an idea of projected timescales and possible life expectancy, Professor Al-Chalabi then turned to the task with a kind of boyish enthusiasm which I found most engaging.He used three different methods to calculate, based on factors such as onset of symptoms,  ventilator use, peg insertion and first appointment at King’s College.The results of two of these methods revealed the news that Roch should, in fact, already be dead! The third has him dead by August 2015. Professor Al Chalabi told us that he feels this is most unlikely. Roch has been outside the normal parameters all along. He also said that he has known patients at Roch’s stage (and at other and later stages of the illness) to ‘plateau’, meaning that they remain in their current state for some years, without symptoms worsening. I think this is unusual but then, so is the way MND has presented for Roch. On the flip side of this, clearly as Professor Polkey remarked, time is limited and of course it’s not impossible that Professor Al Chalabi’s third prediction will come to pass. After all, that will make it seven years. Roch and I are agreed that if he beats these odds and he wakes up on 1st September 2015, we will have a special celebration. 31st August 2015 will be our 25th Wedding Anniversary so let’s hope he makes it. I’m holding out for the silver.

In the meantime, following Professor Al Chalabi’s recommendation for anti-depressant medication and visits with the Hospice Nurse and the Community Matron, the GP has duly prescribed and we hope that this will help to lift the mood and lessen the fatigue. Unfortunately an initial side effect is...fatigue, so once this passes…let’s hope for a Merry Christmas (sounds of faint cheers in the background).

We did have a cheery time at the West London & Middlesex MND Association Christmas party on 30th November.  As always, it was wonderful to arrive to the warm greetings of our friends there. Such a lovely atmosphere of care and support surrounded us. I wouldn’t have said that five Christmases ago. That day, our very first meeting, I just wanted to run away. Greeted by other MND wives, some of whom had lost their partners, others struggling and clearly in need of support, I felt overwhelmed. I remember thinking “I don’t want to be here!” Afterwards, as Roch drove us home (still driving then, walking with a stick) I burst into tears, clutching the small box of chocolates bestowed upon me by Santa at the party.
Since that dark and wintry Sunday night, we have made friends there, amongst them people living with MND and their Carers and we have come to appreciate the small group of dedicated volunteers who run the branch.  Their emotional and practical support has helped us both enormously.Each year there are absences, some people have died, some too unwell now to attend. There are new faces too, new people with MND and their Carers. I think of how I felt the first time I went along, and wonder if they feel the same. That night I didn’t want to go back but I’m very glad I did.This year I went home clutching my Santa present (small box of chocolates!) and feeling rather more relaxed after a complimentary shoulder and neck massage. I drove us home as I always do now, securely fastening the wheelchair in place, manoeuvring the WAV through the traffic with a confidence I couldn’t have dreamed of five years ago.  

Proving that even the naughty ones get presents!

Wednesday, 12 November 2014

Wheelchair Candy

I said October was a good month for me. This is not just because of Boston, but also because I enjoyed some literary success! Carers UK ran a creative writing competition and announced the results in October. My story was highly commended. The theme of the competition was Caring with special emphasis on Friends and Family. That theme caught at my heart and it seemed to me that the story I wrote appeared on the page before me, almost fully formed. I wanted somehow to get across to my reader how being a carer to someone who is also a partner impacts on your relationship and how sometimes it’s easy to forget who you are and why you are together.

Here is a link to the competition results and I would urge you to read all the winning stories and poems as well as the highly commended entries. Many thanks to Carers UK for the opportunity to tell my story and for publishing ‘Wheelchair Candy’ on their website as a ‘highly commended’ entry.

In which I travel alone to Boston, MA

Good Wives at 'Orchard House'

October was a good month for me. I travelled alone to Boston, MA to spend a week with my dear friend Carmel and her husband, Breandan. This was a carer’s break and a half, let me tell you. The best time of year to visit Massachusetts is the Fall and the beauty of the leaves did not disappoint. At the airport, I reflected on the trip to come: Sunday October 12 2014“So, the day is here and I am waiting for my Gate number to come up. I am on my way to Boston. I have to write that down to believe it’s true. I am alone and this is very different for me. I am feeling sad because I have left Roch behind and I wonder – will I regret spending this week away from him? The people who matter say it’s a good thing that I’m taking this break and for a long time I’ve thought about doing it. Going to see Carmel, exploring Boston. This is the best time of year to visit, they tell me. Not too cold and the leaves are beginning to turn. I am looking forward to lots of new, positive experiences but it’s also a glimpse of a future for me. A glimpse of what it might be like without Roch. I am thinking a lot of the old days and the young Roch. I feel so sorry for him and admire his bravery so much. His stoicism, his patience, how calm he is in the face of what awaits him.”

We talked about going together but he was adamant that I should go alone, that it wouldn’t be a break for me if he came along too. He was right and I will always be grateful that his big, generous heart urged me to go and I am proud of myself, too, because I did go and spent the most wonderful week there. Remember, my blog followers, in a very early blog post, I recorded the reactions of many on hearing the news of Roch’s diagnosis? Do you remember the person who simply told me “You’ve a hill to climb”? That was Carmel.

Carmel and Breandan – best of good company, best of friends – thank you.

Carmel – we’ll always have Concord and Orchard House – and the Isabella Stewart Gardner Museum! BFF

Of Football and Family.

With Alan McCormack. Many thanks to Christy (far left) for arranging this.

Time for a Catch-up Part II: The Family Visits

I’m rather proud of the fact that of all the home matches at Brentford FC this season, I have only missed one (I was working that day). Roch hasn’t missed any. The proud owner of a Carer’s Season ticket, I am following their progress in the Championship with interest. The more games I attend, the more I care. I haven’t quite reached the nail biting agony involved in watching Arsenal but I’m beginning to care about Brentford.* This is a good thing when they win. It was certainly a good thing on 27th September, when Brentford beat Leeds at home 2-1. That was a special one.

This was a greatly anticipated weekend as all of Roch’s brothers, one brother in law and a cousin travelled from Ireland to attend the match with us. Amongst them were three Leeds fans! I’d say sorry guys but really I’m not. WHO ARE YA?

The highlight of the day was meeting right back and goal scorer Alan McCormack after the match. Many thanks to Christy for arranging this. Alan presented Roch with a shirt signed by the Brentford Team and patiently posed for photographs.

These days, although I look forward to family visits, I do experience a certain amount of anxiety in advance. Roch doesn’t have the stamina he used to have and tires easily. I need to know that visitors will listen and understand his needs – and mine – and accept the necessary restrictions we impose. Gone are the days when a long weekend of activity, talking and socialising (especially in a group) can be managed. I hope it doesn’t feel like we are being exclusive and unwelcoming, but truly we are just trying to make sure he can enjoy himself. So we have to pace the arrangements. I think the weekend went really well and I hope everyone had a good time. A big thank you to all for keeping to the arrangements and giving us space to prepare in advance and time to rest up afterwards. It means a great deal when people listen.
Smaller groups are best now. No more big parties. It’s too difficult for him to make himself heard. More and more in conversation he misses his ‘turn’ if there are a number of participants. Gatherings  have to be managed differently. He seems so like his old self, and I’m guessing that’s a relief to people who perhaps haven’t seen him in a while – not just family, but friends too. So when people see that he’s not as altered as they perhaps had feared, they assume that he’s unchanged in other ways, too and expect the old stamina. But it’s not the same and whilst he remains essentially Roch, his physical capabilities are reduced. Of course some days are better than others.

It was a good day in October when we had a lovely visit from Marianne and Laura, Roch’s sisters. They came for the day and it was a wonderful opportunity for Roch to catch up with them and for them to spend quality time with their little brother. He is so happy that he has had time this Autumn with all his brothers and sisters.

Supported (quite literally) by three of the strong women in his life! 
* Brentford's recent winning goal against Derby County in the 94th minute produced a display of spontaneous exuberance on my part which almost went undocumented but was captured on TV camera to my great delight and amusement! 

Monday, 6 October 2014

Plums, Persuasion and ‘Puga does Everything…’

September brings a holiday and a family visit

Time for a Catch up - Part I - We Holiday in Dorset

I think the holiday in Dorset was a success. For a while there it was touch and go, and there were definitely some hairy moments in the beginning, but it turned out well. We were pretty much in the middle of the countryside and basically right next door to a farm so the quiet was broken only by the whinnying of horses and the gentle lowing of cattle. At night we could actually see the stars. Roch and I sat in the garden and watched swallows soar and once we saw a sparrow hawk glide. A neighbour brought us succulent Victoria plums just off the tree. It felt a long way from busy London. 

In the evenings we heated up one of the freshly prepared organic frozen meals supplied by Manna Kitchens and settled down to watch an episode of Orange is the New Black. Tom and Kate showed me the YouTube phenomenon known as ‘Puga Does Everything’, which records the adventures of a pug dog called Puga/Maya (who actually can’t really do much at all) in their continuing campaign to persuade me to adopt a pug into the household. These YouTube videos are accompanied by a catchy tune which is still ringing in my brain. ‘Puga does everything’ sings - er - Puga. Much hilarity generally ensued as we observed Puga attempting to stir a cake mixture or make a horror movie (my personal favourite).
I blame myself for #hairymoment1. Tom and I had crossed the courtyard to the building which housed the heated splash pool. Bliss. Just the two of us, horsing around, racing (he won every time), playing pool volleyball…Kate had stayed in the cottage with Roch. Tom and I called a halt to the frolics reluctantly when we remembered there was no mobile phone signal and headed back across the cobbled courtyard through the sunshine. We entered the cottage in the nick of time.

Now, I should have mentioned that the hoist provided was, indeed an ‘Oxford’ hoist but what I failed to realise was the importance of having an Oxford standing hoist. I thought we could use just about any hoist. Rookie error. Don’t judge me. When I saw it first, I saw that it was different but I thought we could make do. So Kate had tried to make do in my absence and had manfully done her best with our sling and their hoist but it took the three of us to literally grab him and manoeuvre him safely onto the toilet. The hoist was seconds away from toppling over with Roch still attached, in the sling. It only took one use of the hoist to show me what a potentially serious mistake I had made. It shook us all and I really regretted it. I felt I had put Kate in a terrible position, and I had certainly put Roch at risk. Happily, no harm was done and with the help of the proprietors of the cottages and the wonderful Jane at Pluss, a standing hoist was in the cottage by 9am next day, Sunday.
Kate and me on The Cobb
So Sunday started well. This was the day we chose to visit Lyme Regis.  I myself was keen to visit Lyme and walk on the Cobb. For all you Jane Austen fans out there – which of you could resist seeing the mediaeval steps from which Louisa Musgrove jumped and fell upon the Cobb? Looking in the guide books under ‘access’ it is clear that Lyme is a very hilly place but the fact that the seafront has level access gave me confidence. Unfortunately we couldn’t have picked a worse day to visit. 
There was a music festival and the only parking to be had was in a car park outside the town, at the top of a hill. We had been driving round the town for ages and were all hungry and stressed but we parked up and attempted to enter the town on foot. I say attempted as it soon became clear that it was going to be a dangerous business getting Roch’s wheelchair down to the seafront. In fact, we had to call a halt to the procedure. We then realised that the hill was too steep to allow for the wheelchair to return to the car safely. 
 #Hairymoment2. Well and truly stuck. Off I went, toiling up the hill in the heat, to retrieve the car. We decided to make one more attempt to find parking down by the seafront. I drove into a tiny car park, which was full. My heart sank. How on earth was this making Roch feel? I couldn’t believe that we might just have to drive away from a town because he couldn’t enter it in his wheelchair! How much easier would it have been if he could have walked along with us, through the town and down to the Cobb? Out of the corner of my eye I spotted the solitary ‘disabled’ parking space in a corner, occupied by a small passenger van. The back of the van was open and I could see a young man inside. With a fervent prayer I asked Tom to hop out and ask if he was parking or leaving. Yes! He was preparing to leave. What a lucky break. It wasn’t long before we were sitting at the edge of the beach, eating delicious fish ‘n chips. With a cold beer for Roch, in no time the day had been retrieved. I don’t think anyone who isn’t disabled themselves or who doesn’t have some experience of caring for a person in a motorised wheelchair, can possibly understand the difficulties and frustrations involved in simply trying to do what everyone else takes for granted.
By the way, in spite of all, Lyme was lovely – a real seaside feel to it. Strolling along the seafront in the evening sunshine with our Mr. Whippys – what a treat. By the way, when I saw how steep and treacherous those steps are, I had to shake my head. What a foolish, headstrong girl Louisa Musgrove was.

Roch enjoys some real ale at the wonderful Udder Farm Shop restaurant

Check out the following if you are thinking of taking a break in beautiful Dorset:  Accessible accommodation in beautiful, peaceful surroundings, run by the charming and helpful Ann and John Heath

https//  Delicious pre-cooked, frozen organic meals and desserts  Just - 'Yummy...'  Equipment hire in Devon and Dorset. Excellent, friendly and professional service.