The run-up to Christmas and an interview for the Associated Press

I have to admit that I found the run-up to Christmas difficult this year. I felt maybe that I’d tired myself out with preparations for our party. Once the party was over, I couldn’t believe I still had so much to do for Christmas. I didn’t feel very festive during Christmas week. We had our office Christmas lunch and all the people I work with are lovely but I found myself looking round the table and feeling quite detached from the conversation. It felt like it didn’t have much to do with me. It should have been fun and relaxing, but I was going through the motions. In fact, it felt like I was going through the motions for most of the week before Christmas. One morning Roch and I faced each other across the breakfast table and I told him that I just felt sad. For the first time Christmas was making me sad. Would every Christmas feel like this now, I asked? He felt sad too, he said. How many more Christmases will there be for us? Will I cook a big Christmas dinner for Kate, Tom and myself when he can’t eat it? Will I want to? We allowed ourselves to admit our sadness to each other. Afterwards, I felt a little better and after work on Thursday, I did begin to feel more festive. The house looked wonderful with all the decorations up, the party had been a great success and now all I had to worry about between me and enjoying Christmas Eve and the day itself was a visit from a film crew from the Associated Press.
(APTN Horizons http://www.aptn.com/ )

It is Stephen Hawking's 70th birthday on 8th January and the (APTN) are making a programme to mark the event. They wanted to film a couple living with motor neurone disease and the MND Association suggested us. I was dubious at first but we decided to go ahead with it. In fact it was a really interesting experience. The people who came to film us were very considerate and very professional. The whole thing took about two and a half hours and they shot 50 minutes, which will be edited to six. Our friendly young cameraman has promised us a DVD of the finished cut and also the full 50 minutes’ footage. They interviewed each of us, took pictures of photographs of us together and with the children and filmed Roch at work at his computer, putting on his shoes with the famous ‘sock putter-onner’ and enjoying a cigar and coffee outside on the ‘smoking platform‘! Daily life. It’s a programme which will be translated into several languages. It’s funny to think of us being dubbed into Chinese and Farsi.

Our interviewer asked us questions about how we felt after diagnosis and how we cope now and we talked about how helpless we felt then and how, until we talked to the MND Association, we simply did not know how to tell the children. The reporter asked me how we met and what attracted me to Roch all those years ago…I found myself talking about the early years together and his boundless energy, how he could never keep still for five minutes - how idealistic he was, how attractive - how sexy. The day he winked at me across a crowded room and we both felt that spark between us. They are good memories.

We talked about how MND has changed the way we look at life. I think this is especially true of me. I am much more laid back about things when they go wrong. Less likely to freak out when life doesn’t go to plan. We talked about how we enjoy the little things, watching the birds in the garden, noticing the birds in the garden, taking pleasure in the beauty of the light, the shape of our birch tree against the sky.



Holding forth!



Let's try not to look too self-conscious!

Afterwards, I felt that Tom (the cameraman) and Havovi (the reporter) had done me a favour. They reminded me not just to enjoy the present (something I had been unable to do earlier in the week) but to remember to treasure the past.

The Party!

I thought you might like to see some photographs from the Christmas party we had at home on 10th December. This has become something of a tradition for us now - family and friends, music, booze and lots of food! Preparations begin weeks in advance, Christmas decorations for the house and table, planning the menu, buying in the drinks - arranging Oscar the cat's overnight accommodation...there is something wonderful about being together at home surrounded by the warmth of the love, affection and goodwill of family and friends. This year had an added element of surprise as, unbeknownst to Roch, plans were afoot for a 50th Birthday surprise!!!

Sisters Laura (left) and Marianne give little brother a birthday kiss!

                          

With brothers Mairt, Paudie and Eoin (Eoin playing waiter on the right). I know, like peas in a pod!!

Joined by Paudie's wife Ger and Mairt's wife Sheila (from left).

Most of the 'wimmin' of the Maher clan.

                                  

Many thanks go to my sister Maura, without whom this party would not have been the resounding success it was, to my neighbour Michelle, for making a spectacular 50th birthday cake for Roch, to Roch's brother Eoin for his patience and time assisting with preparations on the day, to my brother Dermot, who flew from Budapest for the occasion and to Roch's brother Mairt, unofficial photographer for the night! 

The 50th Birthday

I couldn't leave the blog today without officially recording our family celebration last Sunday. Roch was 50! Kate came home to be with us and we went out to a gorgeous local pub for a delicious meal. The pub has excellent access and a disabled toilet and the staff are friendly and helpful. We were joined by Kate's boyfriend Simon and there was a lovely Christmassy feel to it all. It got me in the mood for party planning.

Looking rather surprised!

Lovely shot of us just below the toilet sign!

Roch ordered pig's ears as a starter but we all agreed that this was a mistake. I don't know whether the chef had made a pig's ear of it (haha) or whether they were meant to be like that - but none of us like them! The rest of the meal was mouthwatering and I never saw a sticky toffee pudding consumed with such appreciation before (Kate). Definitely to be recommended.

The day had started with pancakes and maple syrup, and ended with Birthday cake - with a huge meal in between. That's my kind of day...

Happy Birthday Roch!

Incurable Optimism Exhibition

At last I get a chance to report on this! Helen - just to say the exhibition was only open to MPs and Peers - I'm sure if you had wanted to come to the Reception, it would just have been a matter of contacting the MND Association directly - but I know this comes too late!

The Exhibition was amazing. All week MPs and Peers were able to view Patrick's portraits in the Upper Waiting Gallery in the House of Commons. It's a bit of a thoroughfare, on the way to Committee rooms, so a lot of people were in a bit of a rush to get through, and didn't have time to stop, but hopefully enough did find time to stop and take it all in.

Unfortunately, Patrick himself was unable to attend the Reception and was sorely missed.

The Reception on Wednesday went well, I thought - lots of MPs and Peers were present (see link to find out who came along) 

http://www.mndcampaigns.org/blog/273_the_incurable_optimism_reception_and_exhibition  )

to listen to Gavin Williamson MP (Chair of the All Party Parliamentary Group on MND) give a passionate and articulate speech about the Incurable Optimism Campaign and the work of the MND Association. Let's hope those present listened to his plea for support. Several people spoke, among them Andy Burnham MP, former Secretary of State for Health, who assured us that our voices would be heard and reminded us that his colleague, MP Kevin Hughes, worked and lived with MND before his death in 2006, so the House had witnessed the devastating effects of the disease first hand.

But the most powerful speech came from Alistair Banks, who has taken on the mantle of fronting the Incurable Optimism Campaign. Alistair is a musician and, inspired by Patrick's story, pledged himself to record an album before losing the use of his hands. He has done it! The album will be released in time for Christmas. Find out more about Alistair here http://alistairtheoptimist.org/

Alistair talked about the 'postcode lottery' and gave a stark example, explaining how in Somerset, where he lives, a motorised wheelchair was provided for him - but a few miles away, across the border in Wiltshire a person living with MND was told he would have to buy it himself. Prohibitive for most people. Fortunately, in the instance he spoke of, the MND Association provided a motorised wheelchair - yet again, a Charity providing a service which should come from Government.

There were lots of familiar faces there - the wonderful Julia Franklin, Association Visitor and Optimist extraordinaire (her portrait was one of those painted by Patrick). Here we are with Roy, who treated me to a personal serenade, very sweetly sung "Have I told you lately that I love you..."

Thank you Roy. I rather think that made my evening.

Liam Dwyer was there, with his lovely wife Anna and I was delighted to meet Sarah Ezekiel at last (her portrait is also one of the 18). It was a shame that Roch couldn't be there too, but he wasn't feeling up to it on the day. Everyone missed him.

It's always a privilege to be at the House of Commons and I count myself lucky to have visited several times now. You can see Patrick's portraits here:

http://patricktheoptimist.org/?page_id=49

Being optimistic

I have not been at all well over the past few weeks and so I haven’t been blogging lately. It’s been the last thing on my mind, because when you’re a carer, and you’re ill, there’s nobody to look after you and you are constantly worrying about the person you care for. Luckily, Roch can still do a lot for himself, although everyday tasks tire him and the list of tasks he simply cannot do grows all the time. There were two days when I was too ill to stir from bed and he and Tom just had to get on with it - and they did. The rest of the time, I felt awful and divided my time between bed and prioritising tasks. There were days when I had to rest after carrying out simple chores and lots of things just didn’t get done. Maybe it gave me a small insight into how difficult and frustrating it is for Roch. The first day I went back to work I had to sit down for a while after dressing. He has to rest after he puts on one sock. I wore flat shoes because I felt a bit wobbly on my feet. He has one pair of shoes that are comfy and safe and don’t look awful, and that accommodate his ‘foot-ups’.

We had to cancel his appointment last week at the Wheelchair Clinic at St. Mary’s in Roehampton. I just couldn’t have brought him. It was so disappointing. They told us that it might be the New Year before they could give us another appointment, but we were lucky, they had a cancellation and we went along on Monday. Roch had his driving test (!) and hopefully before Christmas, the first motorised wheelchair will arrive. His own chair won’t be available to us until January or February but he’ll have something to be going on with. I’ll have to make some room in the hall for it. It’s quite a neat affair. That felt like another milestone. I’m hoping it will restore some independence because at the moment, he can’t go anywhere without me or someone else to accompany him. Maybe he’ll grow confident enough to go out for the paper by himself now. He’ll need practice and trial runs with someone with him.

Today we went back to The West Middlesex Hospital for Roch’s appointment with the Neurologist there. It didn’t begin well. Their appointments system has changed, although the letter didn’t tell us this, and we made our way to the Outpatients Clinic as usual, where we were told by a very dour nurse that we had to check in for the appointment at the Main Reception back at the front door of the hospital. The nurse said ‘You can leave him over there and go to Reception yourself.‘ It’s what you’d say to someone about a dog. She had taken the letter from him but then ignored him completely and addressed herself exclusively to me.

The waiting room (really just a corridor) was full and I pushed the wheelchair round the corner to where I knew there were extra chairs. All the chairs at the edge of this waiting area were occupied and there was no space for the wheelchair to go past, to where there were some free seats, so round I went again, back to the corridor area and headed for what I thought was some free space. The nurse called to me sharply (She was clearly cross and felt the wheelchair would block a thoroughfare - then don’t arrange the waiting area in a corridor, I would say!). In the end I suggested to Roch that we both go to Reception. We were fuming, but by the time we got back, we were feeling calmer. I asked a lady to move, so I could sit beside Roch, and she kindly did so. We read the paper and sipped water for a while.

I have to say, I thought our appointment with Dr. Zamourri went well. We seemed to get on better this time. It didn’t feel so depressing. At least, not for me. As with Professor Al-Chalabi, Dr. Zamourri is pleased with Roch and confirms that the ALS is of slow progression. Her advice is to be 'positive'. Poor Roch, he feels he is ‘on the edge of decrepitude’ and sees small reason to be thankful. I think he is angry and I think he is sad and I think he covers it all up very successfully, most of the time. My counsellor tells me that in my blog she sees a ‘relentless smile throughout’ - I hope I got that right? Even if I didn't, I know what she means. I do try to maintain a degree of positivism and optimism - not just in the blog, but all the time. And yes, it is very tiring. You can’t give in, can you? But I think I am also angry and I think I am also sad. I just don’t write about it so much. Maybe in future I will. Perhaps I can see more reasons to be thankful than Roch - slow progression means time to get the kids used to the whole idea of it, time to say goodbye, more time together…time…he sees this too, but maybe for Roch, it’s not enough. I can’t say that it would be for me, if I was in his place, facing his future.

But tomorrow I have to be optimistic because I’m off to the House of Commons. This week sees the exhibition of paintings of Incurable Optimists - a series of paintings by the artist, Patrick Joyce, who at 39, was diagnosed with MND and pledged to paint the portraits of 100 incurable optimists. He is now 41 and he has lost the ability to paint, but he completed 18 portraits and these are being exhibited at the House of Commons this week. The exhibition is open to MP’s and Peers and the MND Association hope to raise awareness and support in Parliament. It is the incurable optimism of the MND Association that one day the disease will be beaten, an incurable optimism that drives people to raise and donate money, to help fund research to lead to future treatments. It is incurable optimism that keeps researchers and scientists in the lab. The MND Association say that it is only through optimism that we will beat the disease. And they are right. So tomorrow, it won’t do not to be optimistic, will it?

Have a look at Patrick's blog - he is a true optimist. I hope to meet the man himself tomorrow.  http.//patricktheoptimist.org/

Mightily Inconvenienced

Thursday was an important day for us. It's been eight months since our last visit to the Neurologist at King's College Hospital. On Thursday we went back again to see Professor Al-Chalabi. It's a long drive to Denmark Hill from here.


Mrs. Satnav almost let us down and didn't work at all for about fifteen minutes. She managed to recommence operations in time to get me round Hyde Park Corner. Last time that's where I went wrong so I was pleased that today I got in lane and remembered what her rather incomprehensible instructions actually meant. Only one wrong turn later ("Recalculating!"), we made it to the hospital where the parking nightmare begins. We reserve a space but the car park is tiny and the spaces are so narrow it's unbelievable. As I rolled Roch away, I tried not to think about manoeuvring the car out of that spot later.

We had forgotten exactly where the Motor Nerve Clinic was and a volunteer at Reception offered to bring us there. Just as well we were intercepted by Andrew, the LiCals nurse (Lithium Trial) who had been looking out for our arrival. Our volunteer was bringing us in the wrong direction! Andrew said he had been expecting us to arrive with a retinue in tow after the Blog appearance in 'Thumbprint'. I told him we had managed to ditch the paparazzi. We're becoming famous!
It's the last time Roch will need to visit Andrew. As you know, his part in the Trial came to an end some months ago, and since then, he has been on lithium for real and continues to have a blood test every month. Andrew took some blood as the last blood test the Community Nurse did was apparently contaminated. The 'Double-blind' Clinical Trial for lithium has now closed and up to November 30th, they will be collating the information - after that, it will be up to the Statistician, who will ‘uncover the Blind’ and discover who was and was not on Lithium. The results should be published by early next year and if they find that there is a benefit, then I guess we will want Roch to stay on lithium. If the findings show that there is no benefit, then that will be the end of it. We must wait and see.

Andrew brought us over to the Motor Nerve Clinic. I followed him, pushing Roch in the wheelchair, along corridors, around corners and finally as Andrew came to a halt outside an open doorway, I glanced in and saw several people in wheelchairs, waiting. I had been about to go on, past the door, when with a shock, I remembered - that's where we belong. We said good-bye to Andrew and I lined Roch up beside the other wheelchair-bound patients. How strange that glancing inside, I didn't connect him with them. It didn't seem to have anything to do with us.

Before we saw Professor Al-Chalabi, a nurse measured Roch’s lung capacity. 100%. A brilliant reading. This was cheering and a good start. It wasn’t long before the Professor himself came to bring us to the consulting room.

He draws his chair in close to Roch, maintaining eye contact, listening carefully to what he has to say and answering all his questions in a kind but professional way. He is always straight with us. He is mindful of Roch's feelings but he knows that Roch wants the truth.

The results of the second EMG test carried out back in April by Professor Mills has proved without doubt that Roch does have MND. Prof Al-Chalabi had wanted to be sure as there were some anomalies. Just as well we had not allowed ourselves to hope. I don’t think either of us had any doubt about the outcome.

Roch asked him about the dosage of baclofen, which is 15mg a day. Baclofen is prescribed for spacicity. Roch feels his arms are being affected and that this is what prevents him from driving. He feels the baclofen is not making much of a difference and wondered if the dosage was correct. Unfortunately Professor Al-Chalabi confirmed what I had suspected - that the problem with his arms and driving is due more to increased muscle weakness than to spacicity and there's nothing we can do about that. No amount of baclofen will help.


We re-visited Roch's fear that the slow progression of his condition will continue in the later stages. He fears a long period of decrepitude. He told Professor Al-Chalabi that he feels he is decrepit now. Professor Al-Chalabi was surprised and said as much. He said that to him, Roch did not look decrepit. He did say that of course it was Roch's perception of himself that was important but he himself would have described Roch's present condition as being 'mightily inconvenienced' rather than decrepit! He is pleased that the disease is progressing at such a slow rate and is cautiously optimistic about extending life expectancy. But for Roch, it's a double-edged sword.

He was, as ever, quite straight with us and made no attempt to sugar the pill. He confirmed that the disease will progress at the same rate throughout. This is confirming Roch’s worst fears. We should expect that having enjoyed the benefits of a slow progression he will also have to endure the hardship of a slow decline. This was hard to hear. Roch told him that already he is a burden! Professor Al-Chalabi said that the reality of the disease is that one becomes a burden and he just has to accept that. I guess this is true - but as I told Roch afterwards, he may feel that he is a burden but really, it's up to me to say whether he is a burden or not. I hope I never make him feel like a burden. If I do, I don't meant to. But neither of us looks forward to a bleak future of prolonged decrepitude for him.

We are mightily inconvenienced.

Jenny gets things done

We had a visit a couple of weeks ago from Jenny, one of the occupational therapists at Richmond Neuro Rehab. I was glad I was at home because we talked about a lot of things. I had only met Jenny once before - Roch has had a series of OTs from Richmond Neuro Rehab (the wonderful Rachel is a Constant - she is the OT from the Council). Jenny is the latest OT from RNR and there is something about her manner I find very comforting. She is matter of fact and I can see that she is someone we can trust to get things done. We talked about a new chair for Roch (she and Rachel were to liaise on this one) as he is having difficulty getting up by himself from his lovely leather chair. We talked about aids for eating i.e. lifting the food up to his mouth (no problems with swallowing). Rachel has supplied us with a selection of specially adapted cutlery to try and our good friend Lerick (hello Lerick, I know you read this!) sent some excellent lightweight cutlery.
Jenny brought a new offering with her. A strange looking contraption called a 'STEADY/SPOON' with a rather outdated descriptive tag line on its box:

Doctors and Occupational Therapists Agree

The SteadySpoon is;

'One of The Most Innovative and Revolutionary

Advancements in the Care and Feeding of the

Handicapped, Disabled,

Challenged or aged Individuals, Ever!'

It's an interesting contraption, a spoon which is attached to the wrist with a velcro fastening strap. As the spoon moves towards the 'challenged' individual's mouth, the food is tipped out, hopefully into the aforementioned mouth. However, the SteadySpoon has been consigned to the cupboard. It's not working for us - certainly not to be attempted with soup! We didn't dare.

Other topics of conversation with Jenny included arm supports, cigar holders and environmental controls. She and I also discussed how Roch manages for lunch when I am at work and I expressed some concern about him lifting and transferring hot dishes from microwave to table. So she promised to look into providing a kind of 'hostess' trolley for him. I'm not sure how Roch feels about this, but it sounds like a good idea to me.

It's becoming a real team effort - Jenny and Rachel, Amber (physio), Jo (Community Matron), Donna (Hospice Nurse) - these people are some of the members of Team Roch...there are others.

Anyway, today two items arrived (I told you Jenny gets things done).  Firstly, an absolutely delightful duo arrived this afternoon with his new chair. Pat and Les, who deliver items for the MND Association. Well, they couldn't have been sweeter. The chair looks as if it has always been in the tv room. It fits in perfectly with our colour scheme! We just hoped, Pat and I, that it was the right size as it may be a little small. So no more struggling out of the leather chair (last night it took the combined efforts of me and Tom to get him up), now his motorised chair at the push of a button will gently raise him to a standing position. If there is a problem with it, Pat assures me that they can change it. Many thanks to the MND Association, to both Jenny and Rachel and the lovely Pat and Les. And here it is:

There you can see Roch's leather chair set to one side. You can also see why this part of the house is now the tv room, as guess what's on the wall opposite? Judge Judy awaits...

I have a feeling the leather chair will become Tom's chair now. He won't complain about that.




The second item to arrive was the 'hostess' trolley. I don't know what he'll make of that. It definitely looks pretty 'old people's home'. Well, if it does the job I guess that's the main thing.

Preparations have begun today for Roch's trip to Dublin - a series of my famous lists lie scattered on the kitchen table and the house looks like a laundry. He's off on Friday morning and back on Monday night. Once he has left home in the capable hands of his cousin Tony, I look forward to a few days spent here with my faithful sister Maura, doing what we do best - talking, drinking tea and shopping (throw in a bit of 'Strictly Come Dancing' for good measure). Bliss. But before then, Roch and I have an appointment on Thursday at King's College Hospital with Professor Al-Chalabi.  A long drive across town, but always worth it in the end. I'll let you know how that goes.

Two jobs done in one day - and more to think about

Yesterday was a red letter day for us! At long last, we now have a 'disabled' parking bay right outside the house. It took a while, but boy do we need it. Initially we were told to apply for it only when it really became necessary, otherwise our application could be refused. Well, that made sense. So we wait until it reaches the stage when parking any further away than right outside the house is really out of the question. We apply for the bay. Then they tell us it will take six months before the process will be complete! However, I have to say that having explained our situation, they did agree that they could probably speed things up a bit - that was a number of weeks ago but today, it happened.  It took them all of about fifteen minutes to organise. Impressive.

 Later, Roy from 'Medequip' arrived with the bed raisers (custom-made). What a great job. I thought they'd be unsightly and, although useful, present an ugly reminder of yet another adaptation to meet a further deterioration in Roch's physical condition. But no! They are wooden and Roy actually went to the bother of using a dark woodstain to match our wooden floor. The raisers are fixed to the floor and the legs of the bed rest inside them, bringing the height of the bed up to a more comfortable level for Roch to sit down and to and raise himself to a standing position. You would hardly notice them, and when you do, they look quite attractive. Thank you Roy, a true craftsman. Thank you Rachel, for organising it. Only thing is, it's more difficult now for him to put his shoes on when he's sitting on the bed. Ah well, you can't have everything...

Today wasn't so good. I was out and he was alone.  He was in the bathroom at the sink and his left leg went from under him. He managed to land with his throat somehow supported by the edge of the sink - but as this position was clearly going to end up choking him, he let himself fall backwards, happily missing any sharp edges. He rested for a while, then slid his way out of the bathroom along the smooth floor of our hallway to the bottom of the stairs, where he managed to bring himself to a standing position. Quite an adventure. By the time I heard about it, he had recovered from the shock and mercifully hadn't injured himself. I imagine he must have been quite shaken. I called to check in with him after his fall but he didn't tell me what had happened in case 'it spoiled my afternoon'.  Well, yes but...
Good thing we agreed that he should never lock the bathroom door. Should we be thinking about one of those alarms people carry around? Time to talk about strategies.

A different stress is as good as a rest?

Not sure I should adopt the above as a personal maxim but it feels like it might just have adopted me! As you may know, I started a new post in work three months ago and it's been a stressful time.  I feel like I'm getting to grips with it now. But there's so much to do in three days!! I can honestly say that at work I really don't think about things at home at all. There just isn't time. Then home I come for my 'days off'. I love those days and especially at this time of year, when I can enjoy the garden with its autumn colours and scents - that crisp smoky air.  A time of pumpkin soup and crunchy apples!

Last Friday at work I felt on top of things and buzzed through my 'to-do' list, but stayed late to do it. Friday is a good day to stay late at work as Roch goes into work on a Friday and out for a few bevies afterwards with his mates. But by the time I made it home I was a lifeless shadow of my usual self and took to my bed with the stirrings of a migraine, leaving the lads to Chinese takeaway...

It meant that although on Saturday I woke blessedly free of headache after a long undisturbed sleep, I was weary and under par for the next two days.  I didn't feel quite as on top of things at home - not the way I like it. So, clearly haven't got the balance right yet.

A good night out

Here we are last night at the Dublin Castle in Camden. How long since we've been to a 'gig'? I really can't remember. In the last two weeks, we've managed one party and a gig in Camden. I'm really proud of us. Bit of a mammoth journey yesterday and we hit so much traffic on the way it was unbelievable. But we got there in the end.

People are amazing. When we arrived, Roch in the wheelchair, we faced a couple of steps into the building. But I've learned that you can rely on the kindness of strangers and if you ask, people are happy to help. Roch can still stand, he just can't lift his feet very well, so he put his arms around two strong young lads who, with the greatest of respect and good humour, assisted him inside. Once in the venue room, we were greeted warmly by Sonja (glamorous in green above), James, Kate and John G. I felt at home at once. The lovely Carolyn had journeyed with us (many thanks for all the encouragement as I negotiated the traffic Carolyn) and we had such a good time together. It proved to us that we can do it. We can still get out and have fun. We were there to hear the Deaf Offenders play (Deaf Offender Terry also in the pic above (I'm wearing his hat), but sadly missed most of their act (Goddarn it!). We stayed for the next band and for a time after that - but unfortunately the Dublin Castle let us down, as the toilets were downstairs, down lots of stairs in fact - so we left early, having kept a weather eye on the liquid consumption. The trusty Lenor bottle came in handy yet again as we drove down the Westway into Shepherd's Bush. How handy was that? 

It was like old times when we got home. Post-gig pangs of hunger hit and we headed out again for a kebab (Roch) and burger (me)! That's what I call a good night out.  

Thank you!

I was feeling positive today, as recently Roch and I have been able to get out and do things - get out and enjoy life a bit and my post was going to be pretty much about that and about where we went and what we did - and I'll still talk about that, but maybe in a separate post. Because I have to say first how absolutely overwhelmed I'm feeling just now. I haven't blogged for over a week - I haven't even checked my blog in over a week. I go in today and I have 19 followers and six new comments! I was pleased with the feature in Thumbprint (the MND Association quarterly magazine ) and of course I was aware that people would read about us. Truth to tell, I was feeling a bit bashful about it all. Thank you, thank you to everyone who left a comment. I feel proud to be counted among you, those who are caring for loved ones with MND. Thank you for sharing your feelings and talking about your lives and your loved ones and what it's like for you - and for giving me some really useful advice and tips (Eileen - what a relief to know there is help when migraine strikes, I can't tell you...) Alison, Sue, Mike and Helen - I feel like I've made so many new friends!

Like I say, today started out as a good day and I was feeling pretty positive, but meeting all of you has given me extra strength. I may have quoted her before, but my mother says 'There's nothing good about mnd' and she's right, of course, but out of bad things, can come good. You've all made me feel good today, despite mnd.

A visit from Donna

This week I went back to my writing class. I almost didn't make it but I'm so glad I did. This was Week three and I've missed the first two, once because of a hospital appointment with Roch and once for a doctor's appointment and feeling generally unwell. Anyway, I was in two minds about going because Donna was coming to see us later that morning and I really didn't want to miss her visit. Donna is Roch's Hospice Nurse and as you may remember, her visits always cheer us up. Now you wouldn't have thought that, would you? We can talk to Donna about just about anything. We don't just talk about death and dying - but we can if we want to, and we do, sometimes. Of all the many professionals we have met and who support us, Roch and I agree that Donna has been the star. That's saying something, because so many of the people we have met so far have been exceptional. This week, it was time for a catch up with Donna. The last time she came, Roch told me that she watched him make her a cup of tea. She sat and chatted and watched him. It's her job to notice things, to look out for changes. This time she asked him if he would like her to make the tea. This time he said yes.

One of the things he talked to her about this week was his Advance Directive. He's been working on this lately. It's a document which records his wishes regarding the witholding of medical treatment and giving guidance to his health representatives (me, Kate and others he may wish to nominate) if he can no longer communicate. It is also sometimes called an Advance Decision to Refuse Treatment. All very sobering but he says that having given it some thought and begun to work on it, he feels better about things. As Donna says, it's a draft, he can go back to it whenever he likes to update it if he changes his mind about anything.
It's a year since Gerry McDonagh died and I refer you back to my post of 3rd November 2010, where I talk about Gerry's admission to hospital and the circumstances in which he passed away. I'm sure Gerry and his wife Pat are very much in Roch's thoughts at this time, as they are in mine. The fear of the end is never far away for Roch, I think, and drafting his Advance Directive is one way to attempt to have some control over what happens. I find it hard to think about. I try to be matter of fact about it when he talks about specifics but it's not easy. I am conscious of a strong desire to get up and walk away. But I don't.

Other things Donna noticed, and we talked about - he's losing weight, but still not enough to worry about. His upper arms and his legs are thinner now. He's still eating and drinking normally, but his arms are getting weaker. Sometimes he finds it difficult to raise the fork or spoon to his mouth. He can still feed himself - he supports his right arm with his left hand and I haven't had to feed him yet. He won't like it when it comes to that, but he has mentioned this to the occupational therapist, Rachel, and she is coming back to us, hopefully with some suggestions. She has already provided lighter cutlery.
We talked about our visit to Tiz and the arrival of the BiPap.
Donna always asks about his reading material which we laugh about because it's never very cheery. She encourages him to stay in work while he can and I am with her on this. Of course, it's his decision but he is so good at what he does and working makes him feel good about himself. In general, he doesn't feel so good about himself anymore.
I think she was cheered by the fact of the coming Stag weekend. When Roch decides to do something, he really goes for it and he is really looking forward to this. All the brothers plus old friends from home and sound mates from London will be there. Sixteen in all, I believe.  In fact, I'm not sure Dublin knows what's in store, but if it survived the Viking invasions, I'm sure it will survive Roch's Stag weekend.

Clean him out and get him out!

So last week we had a visit from the Roehampton Wheelchair Service. If Roch passes his driving test (!) he will have a motorised wheelchair. This is great news. The idea is that Roch will then be able to venture out alone (but just locally, as we won't be able to put this wheelchair in the car). I think this will be daunting for him at first but I hope it will mean he will feel a little less dependent. His sister Laura and her husband Dan came to visit last week, too. She told me that she found Roch better than she expected, but was startled to realise that he really cannot leave the house alone. She said she hadn't thought about it, but found it sad that he can't just pop out for the paper or a pint of milk any more. Maybe, when he gets used to the motorised wheelchair, he'll feel able to do this. I hope so.

We attended an appointment this week which Roch had been dreading. If I tell you that it was at the Bladder and Bowel Clinic at Teddington Memorial Hospital, you'll understand why. You'll know from previous posts that Roch has had problems on and off for over a year with sudden bouts of bowel urgency. It's a huge anxiety for him and actually prevents him from going out at times. There's a real fear that it will come upon him in public and he won't make it to a toilet on time. His mobility is so much less and it's more difficult for him to undo his trousers quickly (this is a separate issue which we are looking at, too). The GP prescribed imodium but he can't keep taking this all the time. So an appointment was arranged with an Continence nurse. When we arrived at the hospital, we approached the Receptionist on the ground floor and had a classic sitcom moment - we asked her where we would find the 'Bladder and Bowel Clinic' and of course she didn't hear what we said so we had to repeat it, loudly! Somewhat abashed, we followed her instructions to find the lift and found ourselves alone on the First Floor with no visible sign to direct us. I left him in the waiting area and went exploring. There was a sign along the corridor at the top of the stairs, so any able bodied person looking for the clinic, who had reached the First Floor by using the stairs would know where to go. But there was no sign outside the lift. We waited and eventually the Continence Nurse came to us.

Beforehand I knew him to be anxious, embarrassed and braced to feel shamed but none of his fears were realised. To Tiz, the nurse in question, I'm sure it was all in a day's work. For us, she was a miracle. We spent a long time with her and she was professional, matter of fact and understanding. It was easy to trust her. We had an interesting conversation about how in this country everyone is embarrassed by the word 'bottom' and she can't understand it. She's Italian and she says that in Italy, it's viewed simply as part of the anatomy and bowel movements are a fact of life. So refreshing. No need for any embarrassment.

Now we have several strategies to pursue in turn, beginning with attempting to initiate a routine so that Roch can control bowel movement using suppositories and diet. We start with glycerine suppositories for two weeks, and then use more powerful laxative suppositories if they don't work. We will do that for a month. The idea is to plan bowel movements so that they are over and done with in advance of any major outing. While we still can, we have to get our lives back so that we can do things, get out, get away. What a shame that what is preventing us so often is not motor neurone disease itself, which will eventually take away any choice about going anywhere, but this bowel movement problem. It's presence is due probably to a number of factors, including medication but is definitely exacerbated by Roch's anxiety around the issue.

Tiz is mindful of Roch's dignity. Pads were mentioned as a last resort and we hope it won't come to that. This was an eventuality he had sadly considered himself. When I saw 'nappies' on his list of questions to ask, I was aghast. This, surely is not what he will be reduced to - not at this point, at least. But Tiz is going to do her best to make sure this won't be a necessary option and we will work hard with her on it.

If the new regime doesn't work, we will be instructed in the art of Anal Irrigation!! Basically, clean him out and get him out! We'll try anything to make sure we can enjoy life while we can.

The BiPap Harmony II

We were back at the Royal Brompton Hospital today and have returned complete with a brand new BiPap machine - a non invasive ventilator. It's very compact and will take up hardly any space. We were expertly instructed in its use. Roch had a practice. It's not as noisy as I thought it would be. He doesn't need it yet but it's important that we are both completely au fait with the way it works and how to put the mask on and take it off etc. He thinks the mask makes him look ridiculous but as he hasn't even seen himself wearing it, he is not the best person to judge this. I am here to tell you that he doesn't look at all ridiculous. He did look vulnerable and a little bit scared.

So how does it help? It comes with a simple explanation:

The ventilator is a simple device that acts like a pair of bellows to help support your breathing. You will wear a mask over your nose, or nose and mouth. The ventilator delivers gentle pressure through the mask which helps your lungs to expand. When you use the ventilator, it helps to keep the oxygen levels in your blood at the right level, and helps to get rid of the waste gas (Carbon Dioxide) which you breathe out. This should help you to get a better night's sleep and feel more refreshed on waking in the morning.

We wish it wasn't necessary, but as it is or will become necessary, I do see it as a positive thing, because it will help Roch to feel better and to enjoy life for longer. Its use at night can ensure a brighter, more comfortable day for him. But it feels like a foretaste of the shadowlands to come.

After our session with Adam, the extremely professional, kind and pleasant young man who talked us through its use, we had another chat with Professor Polkey. You remember I mentioned him on the blog before, in pretty glowing terms? He didn't fail us today. Roch is very preoccupied with the issue of how the end will come - or as Professor Polkey neatly put it -"How you will expire". (I don't think anyone has actually mentioned the word 'death' yet). He knew exactly what was on Roch's mind and understood his anxieties. He approaches the issues with great clarity and in a very down to earth way. His very expertise is reassuring in itself. Roch is still adamant that he does not wish for invasive ventilation - given the choice, and if he is not carried off by a chest infection (it happens this way), he would prefer one day, if on 24 hour non invasive ventilation, to have the mask removed and just pass away. According to the Professor, this does not happen too often. But it does happen. It's not illegal, because the patient is simply refusing medical treatment, which is their right and the medical people are very thorough in making sure that this is really what the patient wants and it's not just, as he put it, that the patient has woken up after a particularly bad night, feeling pretty depressed. Almost in anticipation of Roch's next question, he explained that the Consultant (in this case, we're hoping Professor Polkey) will then manage the patient's end of life with pretty powerul drugs, to ease their passing, minimising any distress (Roch is fearful of suffocation).

As before, Professor Polkey is keen to answer any questions, from either of us, but as usual I find I am quite passive at these meetings. It is a subject which I find just too overwhelming. I thanked him, nodded, said I thought he'd been very clear.

When we got home, we were both exhausted and we slept for a few hours. Roch is still resting. I am typing this in the garden, and as I type, I am watching some tiny birds (I think they are coal tits), darting through the branches of our birch tree, boldly zooming in to our new bird feeder (purchased in the New Forest, a few weeks ago) with graceful precision. I would guess that they are watchful for Oscar the Cat (the bird feeder is just out of his reach, of course) who, if they only knew it, is currently fast asleep on 'his' chair in my room upstairs and quite oblivious.

Life goes on. By the way, Professor Polkey did not tell us to 'stay positive'. Thank you sir. I'm finding it a little difficult this evening, I have to say.

'Let's stay positive'

Lots of people give you advice when you're an MND wife and it's very well meant. There's one particular phrase that comes up a lot, and it's beginning to jar. Consultants use it constantly.




Let's stay positive (or 'Advice to the MND Wife')

Best foot forward,
stiff upper lip,
let's be positive,
musn't give up.
Don't let the side down,
be of good cheer,
each day is precious,
remember that, dear.
Live in the present,
forget about the past.
Don't worry for the future,
it may not come to pass.
Is he still working?
Can he still drive?
Oh dear so sorry.
Still, let's stay positive.
Don't speak of sad things,
don't talk to me of loss,
just smile and say,
'We're doing fine.'
No matter what the cost.
Then I can go upon my way,
and leave your life behind,
and thank my lucky, lucky stars
it's not got me, or mine.

DM

It's good to talk

On Sunday 18th September, we went along to the local MND branch meeting. We always feel a reluctance before setting off, we'd always prefer to be going somewhere else! But afterwards, we're glad we made the effort. This time, before the meeting, Roch had invited another 'MND' couple to our house beforehand. We are further along the road than they. Now they are at the stage where they need to plan changes to their home and they were interested to see the job Chris and Tony had done for us. I think they were impressed. As you know, it was a fantastic job and it's all working beautifully.
The two men living with MND sat in the garden with espressos, the two MND wives sat in the kitchen drinking tea. It was good to talk, good to share experiences. We women wondered what they were talking about, what they were finding to laugh about together.
She and I talked about how, although the disease presents differently for every single sufferer, most people experience similar problems at some point in its inexorable course. There should be an answer to the practical problems, we agreed. A central point to go to for tips on how to get round these difficulties. The occupational therapists and District Nurses are usually the people to call on. In our case, the invaluable Donna, our Hospice Nurse, has been wonderful. The MND Association website and literature provide lots of answers.
But afterwards, I took time to reflect and it's all very well, but there will come a point when there will be no answers, when there will be no device or tool to assist. Then it will be down to us as carers - and our helpers too of course, to carry out the task ourselves. Then we will just have to 'accept the things we cannot change' and get on with it. It's not giving up, it's knowing when we have to accept the inevitable.

We talked about how careful we are about offering help. They have a rule about this. She doesn't offer to help unless he asks for assistance. We kind of had that rule, but ironically, that morning brought an incident which has made us revisit the rule. Roch was in the kitchen when I heard something drop to the floor - it sounded like something light, something small. I stopped myself from running in to help. He didn't call me. Instead, he stooped to pick it up himself - and fell over. That's what has to be factored in - will they be sensible about asking for help? He didn't hurt himself - it was a slow descent. It was a few minutes before Tom and I managed to help him up again.

We're learning all the time and no matter how many people have been in the same position before, there's only so much you can learn from their experiences. Still, it was good to talk and I hope we helped each other.

Catch up

I had a meeting with my boss the other day. It was my first 'One to One' since starting in my new role. Before we discussed work as such, she asked me how the work/home balance was going and how I felt it was all working out. She asked me how Roch was. I mentioned that he had had problems driving that morning, but had just about managed. His left arm, so feeble. I told her that I had been finding it quite difficult to get the balance right but that the flexible hours helped immensely, given the recent lessening in strength in Roch's upper arms. It means he needs help with so much more. I think it was a successful meeting - we went on to talk about work and set objectives for the next five months. I felt good about the meeting as it drew to a close and as I left her office, she remarked on how 'chirpy' I was. I've been thinking about that. I suppose I was chirpy. I wonder if she felt that it was odd to be chirpy when your husband is living with mnd, when he is probably losing the ability to drive, struggling to lift the fork to his mouth, contemplating his final resting place. Is it freakish of me? Is this normal behaviour? I don't go round with a long face all the time. I mentioned this to my counsellor and I felt reassured by her response. I am a chirpy person - that's who I am and it's good that I can still feel that way, still be myself. It doesn't mean I'm not facing the truth about the situation and it doesn't mean I'm not sad about it.

He's very tired at the moment and has to rest a lot. We think it might be the lithium dosage which has been increased to three tablets a day. We think, we don't know. Something, (perhaps the lithium) is also affecting his digestion and this is something which has a real impact on his confidence in terms of going out. Perhaps it will settle down but it's another factor to be taken into account when planning any outing.

We're still waiting for the Council to post their notice about our 'disabled' parking space in front of the house. The notice (inviting objections - like a planning notice) stays up for three weeks before they even think about actually painting the lines. So we're still at least three weeks away. I'm hoping people won't park in the space then. It's a struggle for him now to walk even the length of two or three houses away all the way to our front door.

The nice Medequip men came and measured the bed. They are making bespoke raisers and fixing the bed to the floor to make it easier for him to get in and out and to stand up from a sitting position. Speaking of which, the leather easy chair will soon be extant from his point of view. Enter the 'riser' chair - that will be the next step.

Ambushed again

We didn't have a great weekend last week. We were on edge with each other. We talked about it a bit the other day and agreed that we really had to acknowledge how shaken we were on Saturday by his inability to drive. He couldn't lift his left arm. He has driven since then. In fact, we went to Stanstead on Monday night to collect Kate, who spent a few days in Spain last week. He drove all the way with no problem at all. But it's the first indication of trouble. I always have to be with him, in case he needs me to take over. We decided that Saturday cast a pall over the whole weekend and further into the week in fact. This will truly signal the end of independence as he knows it. Why we were so shocked and surprised I don't know. In a way we're constantly on the lookout for these signs of further deterioration but on the other hand, I always feel ambushed. Maybe part of me is still hoping Roch will be different, somehow the disease will not take the usual course because it's happening to us and not to some other people we don't know. Rubbish of course.

Anyway, on Sunday I was sitting on our bed, applying make-up (best face forward). Roch was at his laptop, using his Dragon technology to compose a message. I absently (and rather rudely) commented on his sentence construction. Mea culpa. His reaction was more than I bargained for. He was really angry and swore at me loudly. I of course dissolved into tears and rushed out of the room (it really didn't help my mascara application). I knew I shouldn't have corrected him - how irritating for him - but I also felt his reaction was out of proportion to the offence. A little later, he apologised. I forgave him instantly. He wasn't angry with me. He was raging at fate and I rather conveniently presented him with a target for his pent up frustration and anger. We managed to talk it through. It's always the people closest to you who get hurt. I am not without blame myself. I've been irritable and short with him and I really don't want to be like that.

We made a rather special trip this week. It was a beautiful day on Tuesday and we were driving back from a shopping expedition. As we passed the little road leading to East Sheen cemetery, we made a spur of the moment decision to turn in and take the opportunity to investigate their natural burial place. Out came the wheelchair and we made our way through the cemetery in the sunshine. There is a small grassy glade, shaded with trees, where one can choose to be interred without a marker. It didn't feel upsetting because it didn't seem real. It's possible to reserve a spot there for five years and Roch is thinking about this. It's a sensible plan. Maybe he'll change his mind. Maybe the left arm had something to do with it.

A dream

Last night I dreamt that I was reading the book of Roch's life. In my dream I am excited about this because I know it means that I will find out how his life ends. In reality this is something which preoccupies both of us. In the dream I read the words of a review which describes his life as coming to 'a joyful ending' and my dream self is so glad about this. As I read, I feel guilt that I haven't always appreciated him during his life. I am impatient to reach the final chapter, and speculate about how the end could have been 'joyful'. Often in biographies the centre of the book contains photographs and so it is with this. There is one photograph which particularly strikes me. It is a photograph of Roch on what seems to be an Arctic expedition - complete with stick! Standing with a group of able bodied men in the icy wastes, wearing a thick parka, but unmistakably Roch. In my dream I suddenly realise how the end might have come - a natural end, engaged in a mission of exploration and I eagerly turn the page. But of course, that was the end of the dream.



This morning I described my dream to Roch. He told me about a person on PLM (Patientslikeme) with MND who died recently in her sleep. He feels encouraged by this. I noted his eager approval of the 'normal' dream death. There may be some of you reading this post who will feel it is morbid of me to recount my dream or perhaps unfeeling of me to have shared it with Roch. This is the reality of MND. It's a terminal illness and you can't help thinking about death and about how it will be for him at the end. It's important to be honest with each other. It's not something we talk about often but I know it's something he worries about. It's obviously on my mind too, or I wouldn't have had such a vivid dream.

Arsenal v Swansea

Roch and Tom have gone to the Arsenal match. Like last time, the plan was for Roch to drive to the Emirates, but that wasn't possible today. Shortly after I waved them off, I heard the key in the door. Left arm failed to cooperate. So they got a taxi. It's better in a way. Less stressful, less to worry about, but it's not a good sign. It's a blow.

Yesterday he stayed off work because of a bad night. I forced myself in although with incipient migraine. In my defence, with my meds it often passes off, but not this time. After an intense morning with many demands on my attention (don't get me wrong, I do enjoy my job), I realised at lunchtime that I would have to call it a day when my stomach lurched the very instant a colleague brought his lunch into the room (a usually delicious aroma of chinese food). I made my preparations and eventually left before 3pm. On arrival home I once again encountered the croissant I had gingerly consumed for breakfast, then retired to await relief, which came only today, mid-morning, leaving me exhausted.

Meanwhile, back to yesterday and Roch home alone. Not usually a problem, but he tells me that it took him a long time to prepare his lunch. He likes to do this, but yesterday he needed lots of rests. I need to be more organised and make preparations for these eventualities. Seems so obvious after the event. Note: frozen dishes, microwave meals, easy to prepare. It may also have something to do with the kind of thing he likes to cook, which involves lots of chopping and preparation. We will have to discuss less labour intensive dishes for days when I'm not around at lunchtime.

Well, at least Arsenal beat Swansea. I mean, there's only so much a man can take.

Blog Notes

Monday 5th September

We had breakfast at the hotel this morning. It was the first time as I watched him, that I thought he wouldn't be able to eat by himself. We sat at a table by the window, looking out to the gardens. There were very few people in the dining room to witness his struggles. Those who were present didn't seem to notice. The problem wasn't just cutting up the food this time. This morning he could hardly lift the fork to his mouth. He rested between mouthfuls. It was a shock. He did it by himself in the end, very slowly. He commented on how cruel it was for God to have given him this disease - a man who loves his food, especially a full English breakfast. I had no answer for him.

We also learned today that when he is in his wheelchair and it rains, his legs will get very, very wet. We need a raincover I guess. Pretty obvious I suppose, but it's the first time it's happened. We got caught in a heavy shower in Lyndhurst and I hurried him back to the car. I felt in control but I forgot that it might have been a bit scary for Roch as I fairly ran along in the wet! I'm not sure he entirely trusts me with the control of his wheels. Tom is the King as regards wheelchair pushing. But the sooner we organise him under his own steam, the better.

Thursday 8th September

There has been a car parked outside our gate for two days and a night now. We are waiting for Richmond Council to organise our disabled parking space and we don't know when that will be. Apparently they have to put up a notice asking if anyone has any objection. I don't know how long that stays there, but they haven't done that yet. I can't help wondering - are people just stupid? There is a ramp with handrails from the door to the gate. It's not exactly brain surgery to work it out. Or do they just not care? It's such a struggle for him to get from the car now, walking up the road any distance. Yesterday he had to park about five doors away and he told me that an old man walking slowly past with some difficulty himself, asked Roch if he needed assistance. He didn't have to tell me that he refused the offer. I just hope he doesn't fall on the way.

In the New Forest

3rd September

So we made it to the New Forest and we really are in a forest, lots of trees and lots of ponies!

A real find this afternoon, a country pub called 'The Crown and Stirrup' (great name). We stayed awhile. Despite a step down into the pub and another up to negotiate our way out into the garden, he made it with no real difficulty. A cold clean pint was its own reward. Even my tonic water tasted a cut above the usual offering. Tall trees rose gracefully behind the garden and the late afternoon sunshine came slanting through the branches.

The hotel is more than satisfactory but falls short of excellence due to a slight shabbiness. Faded wallpaper and chipped paint can lend an air of 'shabby genteel' which is acceptable but a mouldy shower curtain? No excuses. The linen, however, is crisp and spotless and I can almost forgive the shower curtain given the flawless evening meal. Absolutely delicious.

Earlier today I wheeled Roch along the main street of Lyndhurst which has a seasidy air and an abundance of Antique shops. Purchases included the obligatory Saturday guardian, a bottle of Merlot and a bird feeder made from a coconut!

Over dinner we covered a number of topics. We reminisced about our honeymoon in Crete and discussed Roch's future medical retirement. We touched on how bizarre it is to know what will kill you. We discussed spasticity. We take issue with the Chambers dictionary definition of the noun 'spastic': 'A person affected by cerebral palsy' ok but not everyone who is spastic has cerebral palsy or 'Awkward, clumsy, useless'. Roch asked me if he could now be classified as a 'spaz' (not a very politically correct term, but pure 'Dublinese'). We debated. The symptoms are minimal but does the very presence of spasticisty symptoms mean he is a spastic? I would say not on the above definition but he argues that it makes him feel 'awkward, clumsy and useless' so he is a 'spaz'. It remains in debate.

We congratulated each other on the fact that we were sitting together celebrating our Wedding Anniversary for the third year running since diagnosis, and he walked to the table in the restaurant aided only by two sticks. We admitted to each other that at the time, we didn't think that three years down the line he would be a) alive b) if alive, walking c) if walking, talking. Pause for the clink of glasses as we toast the slow progress of the monkey.

He tells me that Donna (the Hospice Nurse) has organised a week long stay for him in the Hospice in January. It's meant as a respite week for me. I am shocked. It seems too soon but maybe by January I'll welcome it. I can't help feeling that someone else probably needs it more. We may not accept it. I tell him that a week in the Spring might be nice. I would think about going to France with Maura. He is anxious to assure me that he has my blessing for such a plan, just in case, when the time comes, he is unable to speak. Who knows what thoughts go through his head. Good God, Roch, I say. Surely that is not imminent? No no, he assures me. But just in case. We wonder if Donna thinks he's 'fucked'. The steaks arrive and after an initial struggle, he manages to cut up his by himself. I venture to have a glass or two of rioja and I think both of us are glad that the bedroom is only a few yards down the corridor. Duly replete, we retire.

Blog notes

I've been keeping Blog notes in a little orange notebook. Sometimes I feel like recording a feeling, a moment, but my laptop is not to hand or it's just the wrong time of day. So I decided to add a notebook to the contents of my already overloaded handbag. Here are some jottings from the past week:

30th August

This morning, as I was dressing for work, I heard the sound of things falling and rolling across our kitchen floor, to the colourful accompaniment of Roch's swearing. I was aware of a feeling of irritation. I was feeling tired after a restless night and anxious about the working day ahead. I made my way into the kitchen to see him standing unsteadily at the open 'fridge door, at his feet a sea of baby carrots. He told me to finish what I was doing first and then come back to pick them up and I automatically retraced my steps to the bedroom, mascara in hand. Then I thought 'What if he slips on one?' So I ran back and picked them up. I could tell how frustrated he was, not just by the swearing, which had ceased now, but by the silence in the room. He sat at the table, looking sadly out the window at our garden. The new handrails are in place on the ramps now. It was an essential piece of work. They are perfectly functional. But somehow they form a barrier between the house and garden. The garden doesn't seem accessible anymore. I guess this is how it has felt for Roch ever since he began having to use the ramp. Now for me there is a physical barrier and I have to use the ramp too (occasionally I duck between the rails when nobody's looking). I don't like it but it's a small thing, after all. I don't expect he likes it much, either.

Standing there in the kitchen I notice that Roch's finger nails need cutting and, conscious that the Community Nurse is coming later in the morning to take bloods (for testing at King's College, as he is on Lithium now), I insist on cutting them now. (I am embarrassed to think his personal care may look neglected). He requests that I leave one long for nose picking purposes. He says this to hear my scolding protests and I do not disappoint. I cut all his nails. I'm getting good at this. Just before I leave for work the Toshiba TV man arrives. The TV for the bedroom has been fixed at last. As I depart, I hear Roch apologise for the mess in the bedroom and he follows the guy into the room, stick thumping heavily on the wooden floor. I leave him to it.
As I drive away I am filled with a mixture of sadness, anxiety and relief. If feels like a kind of escape but I wonder which feeling will overcome the others when I get to work. In the event, at work I settle quickly to my tasks and manage to focus on work priorities. I have very little time to dwell on the events of my morning so far, or to worry about my husband.

31st August

Well, 21 years ago today I was the blushing bride and he was the (believe it or not) bashful groom.
This morning I helped him to button his shirt. He went back to work today after an absence of six weeks. He had a disturbed night. Anxiety perhaps? So progress was slow. To save time we showered together. Nice for him, nice for me. As this disease progresses, the dynamic of our relationship will change, is already shifting. It's important to retain the small daily intimacies, I think. More and more I assume the duties of carer but I'm still his wife. How much easier to accept assistance with hair washing (he has difficulty lifting his arms) in the shower when provided by equally naked wife! Very eco-friendly, as we save on water too.

1st September

I came home from work yesterday longing for some space, some time to myself. Work was hectic. In and out of meetings, more work generated by each. I find my new role challenging, but stimulating. I'm beginning to relax into it now, starting to enjoy it - but it's non-stop. I got off the train at Whitton, to pick up food for dinner along the way. I was surprised that I had the energy and the interest to think about it. For some reason, I quite fancied making rice pudding (comfort food? Memories of Friday mealtimes as a child - that gorgeous crispy baked skin on top. I loved to break through it with my spoon to the creamy rice beneath and smell the steamy sweetness. As I walked throught the quiet streets around our home, I made a conscious decision to 'pay attention'. I noticed the woodsy autumn smell (so early!), the pleasant cool air on my skin, the vivid colour of a single rose. Live in the moment. It doesn't come naturally to me. It's easier for me to walk along, head down, in a cloud of anxiety. Why do I forget that exercise helps, that just being outside can help?
Tell you what else helps - getting my hair done! Lovely visit to the hairdresser this morning - or should I say, my 'colourist'? She's really more like an old friend. Not looking quite so faded anymore. Thank you Gabriella.

2nd September

I was reading Eleanor Coppola's 'Notes on a Life' last night, a gift from a friend (many thanks L). I find we have a lot in common. I keep coming across passages which resonate with me. She says that she couldn't understand why she wasn't automatically happy when she married and had children. She consulted psychiatrists and psychologists, one of whom was a woman and asked what was wrong with her. She had it all, she told them - '...a loving and successful husband, a big house, healthy children. I was mystified by my depression. Not one of them said, "You're a creative person, you need to pursue your creative life or you'll get depressed."'
I'm not comparing my creativity to that of Eleanor Coppola, but I realise that at last I am trying to carve out a space in my life for my creative self, create a physical space (a refuge) where I can rest and work (I want to populate this space with beautiful things, possessions with particular value to me), but also forge some time, time to indulge my 'creative child'. I am doing this to survive. Ironically this will become more difficult to achieve with the passage of time. It will also become more vital to my well-being and the well-being of those I care for. (Eleanor Coppola is the wife of the famously creative Francis Ford Coppola and the mother of Director Sofia Coppola).

In the News!

This month has seen a new development for the Blog. I am delighted to announce that 'A monkey on his back' was featured in the August issue of the local MND Association Branch newsletter (West London and Middlesex Branch). I am very proud to be included and many thanks to the editor, Keerthi for the lovely piece she put together. Those of you who are my friends on facebook will have seen the article, which I posted recently. To date it has not been available online.

Wash 'n Go - or is that 'Go' and wash?

It surprises me that I have failed to mention the installation of the bio-bidet! This long awaited and much anticipated piece of equipment had been residing in a box in a cupboard upstairs for some months. It was originally supplied by the Local Authority, through our dedicated and professional Occupational Therapist, Rachel, who has graced these pages before. Tony and his boys made sure all the plumbing and electrical connections were in place and would have done the installation work but the Local Authority wanted their own survey carried out first, and their own people to instal it. That's understandable but the monkey waits for no man. We're just lucky its progress is slow in Roch's case because we had to wait months for the survey, after which, it was a couple of weeks before their man arrived to instal the thing. By this time we had forgotten a) that the bio bidet had been put out of the way and b) where we had put it! Roch couldn't go upstairs to look, so had to send a complete stranger to look for it. Happily when he called me in work, a moments' recollection was enough for me to direct them to where I had stashed it away. But for a split second my mind went blank and I was afraid we would have to send the guy away again.

The problem which the bio bidet seeks to address, of course, is the worrisome question of cleaning and wiping one's arse when there is no longer enough strength in the hands and fingers. Roch worried about this from the word 'go', and we talked about it in the early days with the Community Matron and the Hospice nurse. Short term solutions were suggested and I think he felt quite encouraged and comforted. Our stay in Somerset and the use of a 'Clos-O-mat' toilet there last year impressed us with the efficient 'wash 'n dry' function, but the'Clos-O-mat' costs a lot of money. We could have used our grant from the MND Association for it, but it would have accounted for all the money and we couldn't justify that when there were so many other expenses. Instead, the lovely Rachel suggested a bio bidet, which the Local Authority agreed to pay for as essential equipment for Roch. I'm told they are very popular in Japan. You can have a look at it here:

http://www.healthandcare.co.uk/bidets/bio-bidet-supreme-bb-1000.html

The report from Roch: Not only is his bum washed, it's also polished!

If you visit, you are welcome to use it and test the functions. Ladies, remember, there's even a feminine wash...

Plans

We haven't been making plans lately. I hadn't thought about it, but a meeting when we were in Dublin gave me pause for thought. For the past year Roch has been in contact through the PLM (Patientslikeme) website with a patient like him (R) who lives in Dublin with his wife (A). R was diagnosed with MND last year. One afternoon last month they came to visit us. I'm sure they were as nervous as we were. After all, we'd never met before. None of us knew quite what to expect. I think I can say, at least from our point of view, that the afternoon was a success. We all got on really well and you know what? Now don't take this the wrong way, but it was such a relief to spend time with people who really do understand, because they are living through MND too. R was the only person we met in Ireland who thought Roch looked well! He did look well! It really cheered Roch up. You might have expected some mutual bemoaning of fate, but after an initial agreed 'Well, MND is shit really isn't it?' we didn't waste our time beating our breasts and pitying each other. In fact, pity was conspicuous by its absence. It all felt very liberating. We got down to more important things, sharing experiences, listening to each other and having a laugh. Roch's MND is further advanced than R's and so we had some hopefully useful tips to share with them. But that's not to say they didn't teach me anything. They reminded me of us in the first eighteen months after diagnosis. They are determined to get out there and do things while R still can. We were like that. We brought the family to New York, we went to Tenerife together (first holiday alone), we went back to Venice, we had a wonderful holiday in Somerset. We made plans. But our meeting with R & A made me realise that somewhere along the way we stopped planning ahead.



We've both been feeling low, easily daunted - but he is not housebound, not by a long shot. It is pointless and in fact, damaging to dwell on what he cannot do. Of late, I think we have both been guilty of this. Rather count our blessings and concentrate on what he CAN DO. He can walk a little bit, with two sticks, he can drive, he can be wheeled around in a wheelchair (let's get that scooter and he won't have to rely on other people!). He can eat, drink and be merry and smoke a cigar or two. He can still enjoy life and I can enjoy life with him.

It's going to be harder to travel, but we've decided that we've got to start making plans again. Roch has set the ball rolling and is in the throes of arranging a 'Stag' weekend in Dublin in November to celebrate The Big Birthday! It's rather an ambitious project, given recent reluctance to go down the High Street for a coffee, but It's very 'Roch' to make that leap. Nothing if not enthusiastic, once he takes the project on board. There are plenty of helpers ready and willing to reconnoitre, and make arrangements and bookings.

I've started rather more modestly by booking a weekend away for us at a hotel in the New Forest, to celebrate our 21st Wedding Anniversary, which is coming up at the end of the month.

Plans are already afoot for the now traditional Family Christmas Party.

We've decided to look into taking a cruise next year (February?) and we're currently contemplating another family trip to New York. It can be done. What's the phrase I'm looking for folks? Quoting our own Bertie (Aherne) "A lot done, more to do."

Post holiday blues...

Well, we have been home now for almost two weeks. The mood (Roch and me) has been down, on the whole. Post holiday blues? I've been feeling stressed about my new role in work and in a way I think that's a good thing. It's taking my mind off what's going on at home. I've been quite preoccupied. In another way I suppose when my focus shifts from him I don't feel in tune with his mood or his needs. Things will settle down. I'll find a balance. He hasn't gone back to work yet. He's not feeling up to it, mentally or physically I think. It's funny, recent contact with professionals - they've all said the same thing. "He's doing so well." I guess he is doing well, relatively speaking. So why don't I feel more cheerful? He's still able to drive, he's still working, he can still enjoy his food and drink. His breathing's ok.

The strength in his arms is less and he's lost some weight. His upper arms are looking skinny and his legs are losing muscle - but he's still looking good. When he's sitting down, holding forth, he looks almost like his old self. I notice a tendency some people have to rush to do things for him, rush to assist him. I understand the need to do this, but he can still speak and he usually asks. It's tempting to try to forestall his need to request help but constantly hovering about and doing everything for him makes him feel even less able and more of a crock. It's a challenge for all of us.

He has fallen recently. I was at work and Kate and Simon were with him. It was in the kitchen and I think it gave them quite a shock. It gave Roch a shock too. Just one of the those things, his legs went from under him. I thought when I heard, why did I not think of talking to the kids about what to do when it happens? Never occurred to me. He didn't hurt himself.

His neck's been giving him trouble for a while now. It's almost always sore and the cramps started there a few months ago. It's beginning. There's no need for a neck brace yet - the muscles still working would just give up the ghost if he used one constantly. We must ask the Community Nurse about a proper neck pillow. She did organise some very comfy cushions, two of which we have used to raise the old green sofa in the kitchen. He couldn't sit there any more because it was too low. Rachel, our Occupational Therapist has taken some measurements for raising the bed. It's getting difficult for him to get in and out of bed - that's too low, too.

We're beginning to think about an SDC (Self Directed Care) package. Basically, that's where the Council give the patient a sum of money to use for privately arranged care. That level of care is not required as yet, but we need to plan ahead. An assessment has to be carried out by a Social Worker and a Carer's assessment also has to be done. We talked to Rachel about this on Friday. She thinks he's doing well.

I was proud of my preparations before setting off for Dublin. We borrowed a ramp, the folding toilet frame was carefully packed up into the boot (boy, did that come in handy), radar key for public toilets along the way had arrived in good time, emergency kit and change of clothes in the car, first aid kit etc., wheelchair of course. We even managed to bring some clothes with us! It all went well. But you know what? It's just so sad. The doctors say "You must be positive."

Since coming home we've been to King's College - he's come to the end of the Lithium Carbonate trial. So now he's really on lithium but it will be April before we find out whether he was on lithium for the eighteen months or not. That was some trip. Thank God for air conditioning in the Berlingo. I drove across London in searing heat and I made the same mistake as last time, following Mrs. SatNav's instructions. This time I did my own recalculating and did a U-turn in double quick time. But we were still late for the appointment. He's not eligible for new trials as it's more than two years since his diagnosis. It's another little sign of the time passing.

Last Monday we spent the night in the Royal Brompton Hospital, where Roch was the subject of a sleep study. The purpose of the study was to discover whether his breathing is being compromised while asleep. Perhaps this is why he is sometimes so tired in the morning. Neither of us was looking forward to it but in the end it turned out to be less stressful than expected. All the staff were very kind and helpful, the room was bright and airy with a big window - there were even trees outside and we were treated to the sight of a spectacular rainbow at one point. I found that quite cheering. The visit even felt like a bit of a break. There was quite a lot of waiting around to do, just sitting in the room. So we read and rested and had some awful cups of hospital tea and coffee. The nurses and technicians explained clearly what was going to happen and it happened exactly as they said. They did a lung capacity test (good), an intern (she looked about Kate's age) took blood from his wrist (oxygen levels good) and a technician wired him up in preparation for the study. Later, a second technician arrived and connected him to a machine by the bed. With small tubes in his nostrils, a sensor attached to his ear and manifold lines going to a device tied round his chest, he was all set for a good night's shut-eye! The ear sensor monitored heart rate and oxygen levels. We tested the heart rate monitor at one point by the simple expedient of me lifting up my tee-shirt for about three seconds - but his heart rate shot up so rapidly I decided the experiment had been successful (still got it...) and refused to indulge him with further entertainment of that nature in case it affected the results of the study.

Forbidden to leave the bed from 8.30pm until he was detached from the machine in the morning - but that was no problem as he had his willing hand maiden there for the night (that was me, in case you thought the hospital provided one). I think his sleep was fitful, although no sooner had he remarked that he would never get to sleep at all, than the room was filled with the sound of his snoring. Happily, I had remembered my ear plugs and despite a rather unsteady camp bed, which occasionally threatened to fold up with me in it, I did get some sleep.

The Consultant gave us the results of the study in the morning. We liked her. She sounded like she knew what she was talking about. She says he's doing well. She told us that although there had been some occasional dips in oxygen levels during his sleep, these were within normal limits. However, we will go back to the Brompton for a morning soon, to be instructed in the use of a non-invasive ventilator, just in case. Then they will provide us with a machine, to keep at home if needed. It's an insurance policy and we both agree it's a good idea. Another sign of the times. Another step along the way.

A funny old trip

Well, we made it to Dublin and we've been staying in my brother's house since Thursday night. We can't stay at my mother's anymore as it's not suitable for Roch. So a big thank you to Dermot and Emer, because being able to stay here means a lot. Roch feels safe here. It's like a home from home for him. There's even a Nespresso machine...


It really doesn't seem a week since we left London for Holyhead. We broke up the journey and stayed at a Travelodge hotel in Wales last Wednesday night. We had booked a disabled room and they did their best - shame he couldn't use the shower. To use it, you had to step into the bath. Well,that's completely out of the question for Roch. No amount of hand rails will help if a person can't lift their feet up. Happily the disabled cabin on Irish Ferries had a great wet room attached. Shame the cabin itself was so tiny with no turning room for the wheelchair...


The Ireland visit feels different this time round. Roch asked me the other day if I thought his condition had worsened since we came to Dublin. I don't think it has. But somehow being out of his 'comfort zone', has thrown the condition into relief. He seems worse here. The children have noticed and it's not easy for them. It's not like other holidays. Dad can't do things like before and they feel a bit lost.


There was a big family party on Saturday - all Roch's family gathered together to celebrate a 21st birthday and also to celebrate Roch being home again. I think they were shocked when they saw how difficult it is for him to walk now. There has been a change since Christmas, which is when some of them saw him last. But it was a great day, and I know Roch felt the warmth of the love and affection around him. He really felt valued. Many thanks to Paudie and his lovely wife Ger who went to such trouble making sure everything was in place for him, including ramps at the front and back doors.


But it's a funny old trip. Everything is so familiar - it's us who are different. It's hard to keep the sadness at bay. I think it's worse in Ireland. Why is that?


Today, he and his brothers and sisters have set off for Kilkenny, to see the Holy Man (Fr. Roch, Roch's uncle). It was something Roch was very keen to do. Fr. Roch has been very faithful since Roch's diagnosis. They left here a short while ago, two cars in convoy. I hope they have a good day. I know Roch's in good hands.