Not a whole person any more

What do you say when your husband tells you he's not a whole person anymore, not a 'normal human being', when he turns his face away from you to hide the tears? When he compares what he considers to be the few tasks he carried out today, which have left him feeling exhausted, with all the things he was able to do a year ago? When he blames himself for all the shit Kate and Tom will have to deal with, are already dealing with? When he tells you he is contemplating all his losses, the 'lost' Roch and how his physical powers are diminishing - and also the future which has been taken away from him. His counsellor often talks to him about how he will never see his grandchildren. He has told me that he feels this is intrusive. It's not something he thought about until she mentioned it. Now he sits beside me and mourns this loss. I hold his hand. This is not a time to offer false hope, make an attempt at humour or talk about how we don't know what will happen, that every case is different, that there are the possibilities of a longer life. He fears a longer life spent in decrepitude. This is not a time to speak in platitudes. I say 'I am so sorry Roch, I am so sorry', and I am, I am deeply sorrowful. I listen, and stroke his hand and feel helpless. I do tell him that he is not to blame for the shit that we all will have to deal with, that Kate and Tom are stronger than he thinks, that he cannot take on all their stuff. That they will have other influences in their lives, other sources of support we may not be aware of now. But this doesn't help. 'I should be that influence,' he says. 'It should be me supporting them, but I won't be there.' So I shut up then. Nothing I say can help him.

He worries that he won't be able to protect his brothers and sisters from his reality when they visit at the weekend. Why should you protect them? I ask, why shouldn't they know how it is for you? He nods. We agree however that we do fear interference. Some may deal with their sadness and feelings of helplessness by making obvious suggestions, by trying to interfere. It would be easy for me to feel insulted and I know I can be defensive and I will have to watch myself. By Friday of course, Roch may be feeling better. The very fact of the Family Visit may cheer him.

After a time, he withdraws his hand and asks for a tissue. He's not surprised when I produce one, he remarks that in twenty years of marriage he thinks there has only been one occasion when he has asked for a tissue and I haven't been able to oblige. He tries to stand but it's a struggle. His legs are very weak now. The stairs are terribly difficult for him. The transition to a downstairs bedroom is not far away. We plan the actual move for after Christmas. I'm wondering now if we should be organising this sooner. We are minimising the trips upstairs. The wet room should be finished today and in fact, Roch is already using it almost exclusively. I can add the finishing touches over the next few days.

In a year, a lot has changed. It's hard to focus on the positive sometimes, to be grateful for what we still have. I just don't think about the future if I can help it.

Stream of Consciousness

Extract from notebook 23/11/2010

What would happen if I ate sensibly and took some exercise? If I didn't feel tired ALL THE TIME? If I went back to Pilates once a week? If I meditated for 20 minutes every day? If I prayed (why have I stopped praying?). If I wrote 3 sentences every day? If I blogged as often as I had orginally intended? Would all that make me feel better? Would I feel less scrambled up, tinny, jangly, stretched? What would happen if I took some deep breaths? (Now, there's a thought). If I stopped.
STOP!
Stopped what?
Stopped making endless lists (they sit in my notebook as a constant reproach). Stopped ceaselessly turning thoughts over and over in my head - sofas, death, ramps, beds, measurements, paint colours - jewelled bead, frozen marrow, tint of a hint of a not quite cream but definitely not magnolia, oh for God's sake, MAKE A DECISION! Is the curtain material too much? Will the bed fit downstairs? (Just measure it!). Will Tom get into Sixth Form at St. Mark's? (Take that tone out of your voice, young man!). Will Kate EVER get rid of that cough, and keep up with the work, and be ok - so far away? OmiGod Roch can be so annoying but what will I do without him/What will it be like?/My life is closing in on me/oops nearly went to THAT PLACE but came back just in time...Will I ever get rid of the dust in the house? Will that painter ever stop talking? Oh shit I have to get up at 6 for work, must post that parcel to Kate...
STOP!
Maybe now would be a good time to take a deep breath.

Good news and good friends

When will there be good news? This is the name of a Kate Atkinson novel, and whenever my eye falls on the title in a bookshop, I have to admit, it does resonate with me. It is a question which has presented itself a number of times over recent months. So now I can tell you that there is good news - the MND Association have agreed a grant to us of £2,000 towards the works in the house! This comes from the local branch, so come July - you better be ready to sponsor me on that walk again!!!

Also today, more good news as I realise how lucky I am in my friends - how many friends good and true I have and how much support there is for me. How nice it was to call work re: sending of sick certificate and realise, to my genuine surprise and pleasure that I am missed and that there are people who would willingly come to the house armed with mops, buckets and dusters and be my 'Molly Maids' for the day! I can't pass up an offer like that.

I surprised myself today by asking my lovely neighbour Michelle to help me clear the books and dvds away in preparation for the painting. I don't know why it should feel so difficult! It is completely in my head. It's that Superwoman thing again. I try to do everything myself and then pretend to be surprised when I collapse. Now I'm really pleased I asked, she will help me and promises to bring cake!

(Note to self - learn to ask for help and accept help when offered, people may surprise you and bring cake).

Gerry McDonagh R.I.P.

So Monday we went to Gerry's funeral. Here he is back in July at the Bushy Park walk in aid of the MND Association. That's his wife Pat beside me. Gerry and Roch were diagnosed with MND (ALS) on the same day. 16th June 2009. Gerry had a far more aggressive type of ALS.

About two weeks ago, Gerry caught a chest infection and when Pat called to let us know he was in hospital, I think both Roch and I assumed it was the first of probably many chest infections, one of which would prove fatal. This is often the way it ends for a person with MND. So I was shocked when Pat called to tell us that his Life Support was going to be turned off. I was even more shocked when I heard her story of Gerry's last days in hospital. Unfortunately it is a story I have heard before and it is why the MND Association are working very hard to push for a National Strategy for End of Life Care (see previous Blog entries).

It's such a rare disease that ordinary nursing staff don't have experience in dealing with a patient like Gerry. He couldn't lie down because he couldn't breathe lying down (for us this is so obvious - why couldn't they understand?) but they kept trying to get him into bed and complained to Pat that he was 'giving them trouble'. I should explain that Gerry had lost the ability to speak. For quite some time he had been unable to communicate by speaking. Pat told me that she asked for extra pillows to prop him up. They didn't come, so she went home by taxi, got two pillows, put clean pillowcases on, went back by taxi and propped him up herself. But that's not the worst. Gerry could no longer swallow and so he had to be fed through a tube in his stomach -what they call a PEG. But no-one at the hospital was prepared to take responsibility for authorising feeding and so for 36 hours after admission, Gerry was not fed nor was he given anything to drink. Was this one of the reasons he died from the first chest infection? I don't know, but it couldn't have helped, could it?

The day Pat told me they were going to turn off his Life Support, she also said that he was attached to so many tubes and there was so much equipment round the bed that she couldn't get close enough to hold him.

I am determined to make sure Roch does not suffer like this and that Kate, Tom and I are not standing by, helpless to prevent it. So how do we do this? Already Roch is accepted at the Princess Alice Hospice. We have been assured that when an infection like this strikes, he will be brought to the Hospice, where the nursing staff are properly trained. He will not be brought to the nearest hospital. Now I need to have some more reassurance about this and we also need to think about treatments and interventions. Well, we have thought about this. Now we need all of it in writing and I need to talk to our Hospice Nurse, Donna. It is the worst nightmare scenario for people with MND and their families. I felt for Pat from the bottom of my heart and I don't want to find myself in the same position.

For Gerry, it's all over now. The limitations, the frustrations, the indignities. You often hear it said, but I know it was true of Gerry 'Died after an illness bravely borne'. R.I.P.

It's all go here...

We are slap bang in the middle of the Works to the house and it's bad timing but that couldn't be helped. This past week has seen the noisiest, messiest, dustiest part and here I am stuck at home recuperating after my surgery last Friday. However, I don't mean to complain because there's a lot to be thankful for. I've had Maura here all week and she has looked after us all and helped to clear and pack stuff away and been available to assist with decision making about tiles/colours etc. Whilst I've been laid up she's been the contact point between the guys on the job and me, when Roch's been unavailable. To do this she's been up early every day so I can rest up and she can be on hand when they arrive for work in the morning. A Pearl beyond price.

And then there's Tony. He is running the Job. I think I mentioned him before - Roch's cousin. We have absolute confidence in him and it is such a relief to leave this business in his very capable hands. He could not do more for us. I do not exaggerate. He anticipates almost every need and is usually on hand with a solution. He is trying to make sure this whole process is as stress free as possible, given the unavoidable levels of disruption entailed in having your kitchen ripped out and replaced with a shower room, a wall built to make a separate area for a bedroom downstairs, a completely new kitchen and boiler fitted...and that's just what they've doing so far. There are other jobs to follow, including making both front and back entrances wheelchair accessible and adjusting the floor levels - hallway through to wet room. I could go on.
But Tony's not just a decent person who totally knows his job. He's also very good company and it's a pleasure to spend time with him. So like I say, a lot to be thankful for.

I'm surprised and a bit disappointed that I am still feeling crap myself. Tired and weak and really not up to things. You know that feeling where you stand up and immediately feel you want to sit down again? Well, that's it. I'm told the procedure went very well, no complications - so that's a relief. Bit of a scary moment when they were explaining the possible risks beforehand. A pleasant female surgeon from Colombia reeled them off in an attractive, musical accent, ending each sentence with a question in her voice - "So - we could puncture your bladder? Maybe your bowel? Cause a haemorrhage?" She almost made it sound like she was offering a choice of medical errors. Of course I knew the risk was minimal but for a tiny instant fear had me picturing myself running barefoot across the car park, hospital gown flapping open behind me, making my escape...

All the surgical and nursing staff were very good to me and nothing got punctured, except possibly my pride (very difficult to maintain one's dignity in a hospital gown, I find) as James, an extremely cheery and obliging health professional, did up the ties at the back for me after the surgery and assisted me as I made my wobbly way to the toilet. Thank you James.

Through it all I am acutely aware of Roch, struggling up the stairs more, slowing down a lot I think but soldiering on as usual. He's pleased with the way The Works are going - more than pleased -delighted - but it's hard for him when I'm out of action. It's hard for me too. Of course I'm kind of used to feeling a bit weak and having to recover strength after migraines, but Roch has never had that. He's always been the strong one, physically. It's new for him to have to rest after finding that he's done too much. It's like giving in for him. Although he did remark yesterday that one of the good things about MND is that lovely moment when he's b*****ed, when he finally gets to lie down in bed. I was glad to hear this positive thought but may have spoilt the moment somewhat, as my honest response was 'Roch, there's nothing good about MND'. He kindly conceded that as an MND spouse, I was entitled to this view.

So, where are we now?

So, where are we now? Well, Kate is off at Exeter University and Bless her, she has fallen victim to 'Fresher's 'flu' but has settled in nicely and we are so proud of her! It's a wonderful opportunity, but it will be hard for her, and not just for the usual reasons. She knows she must expect to see changes in her Dad - there will be developments between visits and the decline will continue.
As for us, after various delays beyond our control (and some, I admit, within our control - really, none of us wants the building work to happen) we are All Systems Go for Stage 1 - the new kitchen. I find I can't get very excited about it, (for shame Deirdre, who doesn't want a brand new kitchen?) Thanks to Maura for working so hard to clear space in the shed for storage. She made herself ill (!) and of course, thanks to Chris. Well, frankly without Chris's plans we would never have got this far. Enter Tony, Roch's cousin, who is going to carry out the works. The kitchen is chosen (what a palaver) and to be delivered in the next two weeks. Stage 2 is the Wet Room and you're right, Steve, the Clos-o-mat is sooo expensive.

We have been to the quarterly meeting of the local MNDA group, a gathering which I find more helpful now than before, although it's never easy. They had a guest speaker there, a speech therapist with special experience in MND. She talked to us about communication aids and also explained how speech/swallowing is affected. I think I've mentioned that Roch feels there may be a slight deterioration - his voice may be getting softer and he is conscious of a droop at the sides of his mouth. I did ask her about this, and she says that's how it starts, as the muscles weaken. However, this is not obvious to others (Tom will tell you that Dad can still raise his voice when necessary!). Also, at the dentist the other day Roch found it difficult to breathe during the examination. He had to take breaks. Lung capacity seems less. So he'll have to have this tested and we'll see how it's changed. The walking is slow but the wheelchair has not been used since Somerset. Thank God he still drives. Only one fall - and that happened playing football in the hall of our house with Tom! Don't even get me started...he didn't hurt himself, but it was a bit of a struggle to get him to his feet again.

We went to Ikea last night and as we left, clutching our plans and quotation etc., the guy closing up stared at Roch, open-mouthed. We figured it was because Roch was using his rollator. The man's curiosity was so obvious it was comical. It could have been upsetting but we ended up having a good laugh. "He didn't say it out loud, but his eyes said, 'what the f*** is wrong with that guy?" said Roch. This would be the first question - we do know there is a second question, mercifully seldom asked but we guess in the minds of many, and recently posed by an acquaintance, so - "You should have said, "I've got bloody MND awright mate? - and yeah, we do still have sex!!" was my suggested rejoinder to the question in his eyes... So now you all know and you can stop wondering. (I realise this may be 'too much information' for some of you, just forget I ever mentioned it).

As for me - well, isn't the menopause a great thing? I don't know how much of the fatigue, headaches, low moods and cotton wool head is false menopause, real menopause or just mnd wife symptoms! Does it matter? Just two weeks and the fibroid comes out. Hopefully recovery will be swift and I will start to feel much better, as the effects of the hormone injections wear off. Then we'll find out if it's the real menopause...

Last but not least I record here the very sad death of my dear Auntie Maura. Roch and Tom managed beautifully in my absence as I raced home to Ireland for the funeral in Kilkenny. It was good to spend time with family and to have a chance to be part of a very lovely farewell to a remarkable and much loved lady. R.I.P.

Overlea

We have been here at Overlea for almost five days now and are nearing the end of our stay. How can I begin to describe this experience? Well, I can start by saying that it has been a privilege. After the death of her husband Michael, at sixty-one, from Motor Neurone Disease, in January of this year, Frankie Woods decided to open their home, Overlea, to newly diagnosed people and their families. We are the eleventh family to have stayed here this summer, with two more families to come. The Woods had planned to spend their retirement here but now Michael is buried in the wood which he planted on Overlea land. We cannot begin to express our gratitude for the generosity of spirit and openness of heart shown by Frankie in offering their beautiful house and land to families like us. We will never forget Overlea and although we have never met her, we will never forget Frankie.

It is not an overstatement to say that this place is idyllic. From the decked terrace, which runs all along one side of the house, the guests have a magnificent view of the Somerset Levels. Fields and hills, as far as the eye can see. The two fields sloping down before the house belong to Overlea, to the left, a young wood - a new bench just visible, a hint to tell us where Michael is buried. It's not far from the Badger Sett he built. Birds gather to feed in a special area made just for them, beneath a handy tree in which they can conceal themselves from watching guests. Binoculars are provided. Michael was a naturalist and had written a wildlife column for the Western Daily Express for 15 years. Frankie often illustrated his work and there are many examples of her artwork around the house. Everywhere there is evidence of intelligent good taste and an eye for beauty. The peace of this place enters your soul.

The house is adapted for use by a disabled person. In fact, there are two wheelchairs here. One is motorised. The idea is that someone living with MND can test drive it, try it on for size, if you like. Roch has tried it once or twice. Tom has sped about outside on the terrace, showing Dad how it's done. We are just about to embark on the works to adapt our house and we have picked up so many tips and ideas. The outright winner is the toilet that washes and dries you! No hands required. Gotta have one of those.

But the star of the show has to be the Hot Tub. Really, nothing for me can beat lying in the hot tub on our first night here, beneath the stars, gently massaged by the bubbling water, all of us together in peace and luxury! Now that's a memory to treasure.

Happy Anniversary to us!

It may be of interest to note here that it was our 20th Wedding Anniversary on Tuesday. We celebrated in style! Roch had booked a room in a very posh Mayfair hotel. As the room wasn't ready when he arrived, they bumped us up to a deluxe suite! What luxury. We ate out at Langans in Stratton Street and had a scrumptious meal. Our fellow diners just oozed wealth - I mean, you could smell the money folks! We had a great time pretending we were used to the highlife. Actually I could get used to it only too easily. However, the highlight of the evening for Roch came as we prepared to leave and he realised he had been sitting with his back to George Graham's table. I was severely admonished for failing to recognise such an exalted personage (the closest I got was remarking that there was a guy at the next table who reminded me of Jacques Chirac, balding and rather 'weaselly' looking - turned out to be George). Now if it had been Arsene Wenger, I think Roch would have taken him back to the hotel instead of me...Anyway, lucky for me Arsene didn't show so it was back to the hotel for a nightcap (later, minus an arm and a leg, we retired to our suite.)
Just thinking, two years ago we were planning our first trip to New York and we didn't know about the MND although we realise now it was already affecting him. A year ago, we were looking forward to taking the kids to New York and he was walking with a stick, now he walks with two sticks and we are preparing for the wheelchair. You know, that's not as bad as we were expecting. It's true, in a way it's a merciful disease, because you do have a chance to get used to the changes. Well, we are being given that chance. I do appreciate that not every case is the same and some people don't get much chance to get used to one change before the next is upon them. It's not easy, but believe it or not, it could be worse.

Placebo or not Placebo, that is the question..

So you know that Roch is taking part in this Clinical Trial for Lithium Carbonate? We had an interesting conversation about it the other day. We don't know whether he's on lithium or a placebo but he asked me to have a look at the web for side-effects associated with lithium. So I did. The reason he asked was because he feels in general he is not feeling too depressed. Sure he gets low sometimes - but he's sleeping ok and coping well enough. So he wondered whether he was taking lithium and that was what was helping his mood. Maybe so. A symptom of ALS which seems to be almost peculiar to Roch is the tremor. We have discovered that not many ALS sufferers experience this. Now he always had a bit of a shake in his hand - apparently a percentage of the general population does, but the tremor is much worse now and tremor is a side-effect of lithium. There are other side effects which tie in with various physical symptoms he has noticed in the last few months, like that metallic taste in his mouth. It's not proof that he's taking it, but somehow I felt a little cheered by the thought that he might be, and that it might be helping. You've got to take your comfort where you can.

Reasons to be Cheerful

He was out in the garden today, rescuing a field mouse from Oscar, the Killer Cat. I watched as he knelt down by our birch tree, where the mouse had taken refuge under a bucket (don't ask me why the bucket's there - it's filled with stones and bits of pottery). As the terrified rodent escaped to safety (with Oscar watching balefully from inside the house), Roch tried to stand up. I waited for a moment to see if he managed alone; then went out to offer assistance. I found it difficult. He did stand up with my help but there was a moment where I wasn't sure we'd do it. That depressed him, not being able to stand up alone. He says he did his ALS functional rating scale yesterday and he's down to 30 points now. I think I might have mentioned it before - it measures how the person is functioning in different areas of day to day life using sets of questions 1-4 in each area. As time goes on, the person will be able to do less and less and the points rating will fall. Roch says the next level takes him into dependence mode and there's no doubt, things are changing. I noticed last night he had trouble turning himself over in bed, that's a first. He's getting more self conscious about eating, too. He says soon someone will have to cut up his food for him. He says he's dribbling but I can't say I've noticed that. He tells me that people are beginning to say they can't understand him sometimes when he speaks. Now that's not something I've noticed at all. I do think his voice may be softer tho'. Is that part of it? I don't know. He is scared of the future and so am I. It's hard to take comfort from the fact that there is still so much that he can do. As he said today, in an effort to be cheerful - 'What can I do today? Well, I can still drink a coffee without a straw. So let's do that then.'

Not to go over old ground but it really doesn't seem fair, does it? We are twenty years married tomorrow. I don't know how many years we have left together, and please don't tell me 'No couple does.' Yes I know that but don't try to tell me this is the same.



It's not always been easy but something tells me it's going to be a lot more challenging as time goes on. I think I'm doing ok so far, but I know I haven't been tested yet.



'Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.'

As nice as pie

Return to the blog. Have found it really difficult to write recently, as is evident from lack of entries. This stuff isn't easy and although I thought I could write about my feelings, the more I'm feeling the less I want to talk about it in public. Recent weeks brought a new fear to the table and I can talk about it now because it's over. In short, a cancer scare - it was there, the word was mentioned but turns out that the 'unexplained mass' an ultrasound scan showed is a fibroid, which joins the ranks of the 'multiple fibroids' which have recently come to light in and around my 'uterine cavity'. Loverly. Many thanks to Professor Malone (some of you know him as my big bro, Dermot) for assistance with a rapid assessment. Now I may have to submit to a minor operation to remove the most troublesome of these 'motherf***ers' (to quote our Kate). If that doesn't work, a hysterectomy is suggested. Work has already begun and the first of two hormone injections was administered yesterday to attempt to shrink the said motherf****ers. O joy I will now experience artificially induced menopausal symptoms. In my naievety I rolled up a sleeve for the nurse, but this turned out to be unnecessary as the site of the injection was in an entirely different area...

I have to think about treatment carefully - I can't be out of the picture for long. Roch can still manage really well now but if a hysterectomy becomes necessary sometime in the future, that takes me out for weeks and weeks - no lifting (not even a kettle, I'm told). The suggested treatment removes the fibroid in the uterus, may or may not require general anaesthetic, takes an hour, recovery they say in 48 hours (yeah right), bleeding for up to a month afterwards, but it may not work and the thing might grow back. So is it better to risk a hysterectomy now? Or leave it and hope the fibroids can be controlled by medication and other non invasive treatments.

So the last few weeks have been difficult - now I'm thinking about how we can manage with the proposed treatment for fibroids but I'm grateful because let's face it, I could have been wondering who would look after Roch after I died first of cancer of the cervix - and how about the children? It's important that I stick around for as long as I can for them. I tried not to think about it but the cancer word was in my head and I just don't know what it would have done to Tom or Kate to have me struggling through treatments and having that uncertainty. As for Roch, he found it really difficult to talk to me about it. Well of course he did. He was terrified. That didn't stop me feeling resentful. When we found out the good news, Roch said 'Now it can be me me me again, to which I replied 'Roch, it never stopped being you you you.' Well that's how I felt.

So does that make me a bad person? A very dear friend said to me recently that the thing she thought she would find hardest in my situation was having to be nice to a terminally ill partner all the time. Well it is difficult sometimes and I'm not always nice to him, and I do feel guilty about it but I don't think he wants me to change the way I treat him. I can't be nice as pie all day every day and he can be very annoying sometimes. There I've said it. It doesn't mean I don't love him.

Anyway, we are now in complete agreement on one point - there really is only room for one terminally ill person in this house.

Monkey see, Monkey do

Here we are at the Parliamentary Reception in June, with other members of MNDA branches.

Doesn't Roch look dashing?

On to more recent news:

The wheelchair arrived on Monday. I think Tom has got the hang of it now...

We went to King's College Hospital last Thursday and saw Professor Shaw. For me it is always such a positive experience, and I know that sounds odd. He answered all our questions just as Professor Al-Chalabi had - with clarity and with respect and he clearly knows what he's talking about. He said that 50% of patients diagnosed with MND on the same day as Roch were dead now. 'You're an Outlier,' he said. So yes it's a slow progression. Roch said that sometimes he wished it would just get on with it and he could get it all over with. Professor Shaw didn't blink an eye, he simply said he'd specialised in MND for 18, no, 20 years and no patient of his with the rapid form had ever said they were glad they had it. That helped Roch. I refer you to Chris Woodhead's remarks as reported in a previous post.

Roch's been a bit down lately - I think the shoulder thing has been at least partly responsible. Professor Shaw confirmed it for us - now pause for readjustment as we are reminded again of the power of the monkey. Monkey see, monkey do. And so we go on...

Easyjet have replied to my initial complaint about our experience at Marco Polo airport when our flight home from Venice was cancelled. And yes you've guessed it - pretty standard, 'please submit receipts for expenses incurred etc.,' Round One.

Have I told you the story? Basically, the flight was cancelled and at that point it was all able-bodied men for themselves. All 'special assistance' flew out the window. No priority was given for disabled people, and I won't even go into how unhelpful the airport staff were. No Easyjet staff available. That's a budget airline for ya. Round Two to begin. I will report on progress.

Venice, we miss you...Dublin next and I am really looking forward to going home. As my mother often says, 'A girl's best friend is her mum...'

Bushy Park Walk today in aid of the MND Association

Well, we thought we'd never get there and when we did, we almost didn't find the Walkers, but although we were late to arrive, I am proud to report that I stayed the course and walked my five miles - and even caught up with our fellow MND Association members, Gerry (pictured with Roch), his wife Pat and their daughter Clodagh, with her husband John. We finished the Walk together. So, been there, done that and have the (rather unflattering) tee shirt to prove it! I have been touched by the number of people willing to sponsor me and I am thrilled we managed to go along and support the local Group. So let the cash roll in People!

I enjoyed the walk a lot - I realised that it was hard for Roch to be there when he couldn't participate and I did offer to go along by myself, since I was the one who had looked for sponsorship, but he came along in the end. There will be stuff to process now.

In other news: back to King's College Hospital on Thursday. This will be interesting. It looks like we may not have an appointment with Professor Al-Chalabi, which is disappointing. However, the interim appointments Roch has attended at the West Middlesex Hospital with the local Neurologist have been pedestrian to say the least. He has not felt reassured and describes the experience as 'monitoring his decline'. Somehow, this is not our experience with Professor Al-Chalabi. We shall see. The appointment was brought forward by the Motor Neurone Clinic there, and this was a welcome development for us. We have had our own development and would like them to give us their professional opinion. While in Venice, Roch suddenly lost a degree of power in his right arm. He can't extend it as far as the left now, or lift it as high as before. It was so sudden we wondered if he had strained it in some way. But, hey, it's probably the monkey again.

Today Gerry was saying it's day by day - he wakes up not knowing how he'll be, whether he'll feel the same or if there'll be another change. It's the same for Roch. But Gerry was also keen to say that he adapts to the change, and finds some other way of doing things. (This is a man in a wheelchair, with a peg for feeding and who can barely form words- Go Gerry!). Roch can still lift pints with the right arm, all the way to his lips - and that's important, believe me. Let's get our priorities right.

Venice and The Kindness of Strangers...

Well, we're back from Venice and we had a wonderful time. There are so many things I could write about the trip and I do think it's worth recording many of our experiences, so bear with me. It's not the most disabled-friendly city in the world, but he managed really well. We saw the physio before we went, and she agreed that two sticks would be a good idea. There are always crowds of people in Venice, and using two sticks alerted them to his vulnerability and allowed for a degree of space around him. He can certainly move faster than when using just one. People were very understanding and sympathetic. From the old Italian woman (70's?) who helped him off the bus in the Piazzale Roma when we arrived from the airport - I wasn't sure how he would feel about that - to the man who himself had difficulty negotiating the steps on a little bridge. He saw that Roch needed to be by the balustrade more than he did himself, and as he passed by, he patted Roch on the shoulder, muttering in Italian (We're pretty sure he was muttering in sympathy but for all we knew he could have been cursing Roch for being in his way - I don't think so).

We had some interesting encounters. We met Larek, an American who asked Roch straight out why he had to wear his foot-ups (we were travelling on a water bus -vaporetto- at the time). This led to a conversation about the disease and Larek was keen for Roch to get an opinion on the effect mercury has on the nervous system. Lots of research is being done, he said, on the detrimental amounts of mercury in the water in The States. He praised Roch's positive outlook but the real moment for Larek came when Roch told him his name! Larek was overcome with a sense of coincidence or happenstance, if you like. He was in Venice, writing a pamphlet on St. Roch as he has an interest in saints with a dog in their story. I wasn't sure how Roch would react to this guy, but they ended up having a good conversation. I don't know how much the other travellers understood. Larek's little girl Angie was sure gettin' bored. We met up with him by chance again later in the week and photographs were taken, greetings exchanged. A nice guy. Maybe a bit too spiritual for Roch.

How was the travelling, you ask? Well, thereby hangs a tale. I think I'll leave the return journey to a later post, but on the way out well, where are you now Mandy? The wonderful Mandy. I had, of course, requested Special Assistance when booking. When we arrived to check in at Gatwick, the Easyjet queue was awesome (thank you Larek) in its length and I was frankly appalled. I left Roch with the case in the queue and approached the Special Assistance Desk. First of all, I had to report that the Sp Ass telephone downstairs had been vandalised, so we hadn't been able to call ahead for help to get to Check In. I explained this at the desk and was met with an expressionless stare from a hard faced blonde woman. She told me they knew about this and 'We're working on it.' Not fast enough love. However, I learned from my father many years ago to meet soulless officialdom with a pleasant demeanour (at least to start with) and I expressed my gratitude to hear that Gatwick Special Assistance were on the job. I then went on to say that it would be quite impossible for my husband to stand in the Easyjet queue and that we had requested help when booking. Judging by the look on her face, Blondie had about as much interest in offering assistance as the desk she was sitting at. In fact, the desk was showing more interest. But before Blondie had time to open her mouth, the woman sitting next to her stood up and introduced herself. It was Mandy, our Fairy Godmother. Mandy turned to her colleague and said simply, 'I'll deal with this', and so she did.

Off we went, collecting a wheelchair on the way. 'Don't you worry, love, I'll explain how it all works,' she assured me. She would brook no argument from the man himself. Less than five minutes later, she had Roch in a wheelchair at the top of the gigantic queue, straight in there. A stocky woman, Mandy, strong in mind and body. I got the impression that whatever she made up her mind to do, you just didn't stand in her way. And no-one did. From the check in desk to the Special Assistance in Duty Free, where she deposited us to wait for our Gate to be called, it was smooth and trouble free. Mandy looked after us and we had cause to look back with nostalgia on our dealings with Mandy, let me tell you. On the outward journey, we were well looked after. Graham took over from Mandy to bring Roch to the Gate, after a late call for the flight. He was determined to get us there on time, and kept up a polite conversation until leaving us right at the aircraft door. Graham has highly recommended a cruise experience to us - maybe for next year? He and his wife (he's Australian, she's from the UK) enjoy a cruise - but he advises us to choose one of the bigger ships - better disabled facilities.

A pleasant, hassle free trip shouldn't depend on the kindness of individual Special Assistance people or Airport officials, but by the time we were home again, I would realise that in the real world, it does. I would also realise that Roch needs a Carer now when travelling in a way that was not necessary in February, when we went to Tenerife, and I have to be up to the job.

Look around you

Last week I was walking along in the sunshine. I passed a woman sitting on a bench and I glanced at her as I passed. Her face was pale and she looked tired. Her hair was dark and straight. Her upper arms were white, but the rest of her arms were sunburnt. The perils of short sleeves in hot sun. She was talking to a young man who was standing outside a shop. I heard her say, 'I don't drink, I don't smoke. Why us? Why did it have to happen to us?'



I have no idea what she was talking about. Perhaps she was ill, maybe she had miscarried. Who knows? I thought of how little we know about other people's lives. All around us the drama of life is being lived. People are dying, others grieve their loss. Every day someone is told they have a life threatening illness and they and their families go on with their lives for as long as they can. They are in Sainsbury's or Tesco doing the shopping, they are picking up the children from school, sitting on trains, waiting for buses - and what is going on in their heads? If the pale, sunburnt woman had said nothing as I passed, would I have thought twice about her? I wouldn't have been aware of her distress. She doesn't know how strong an impression she made on me. How much I identified with what she said. 'Why us? Why did it have to happen to us?'

So yesterday, Roch and I went to the Houses of Parliament, as two of the representatives of our local branch of the MND Association. We joined representatives from branches all over the country at a Parliamentary Reception, held in the Members' Dining Room. The purpose of the Reception was to lobby Parliamentarians on a National Strategy for MND. Before the Reception, the Petition (with over 16,000 signatures) was handed in at No. 10. Not enough Parliamentarians showed up I thought, but we did speak to some very interesting people and it was a privilege to be there. Chris Woodhead (former Chief Inspector of Schools, under John Major's Government - and retained in post by the Blair Government - not universally popular) was one of those at No. 10, and later, his was the most memorable of the speeches. There was a special significance for us in meeting Chris Woodhead, and in being present to hear that speech.

In April last year, Chris Woodhead wrote an article for The Daily Mail, in which he spoke about being diagnosed with Motor Neurone Disease, and the symptoms he had experienced in the months before his diagnosis. The tone of the article was not hopeful. He spoke of thoughts he had had of ending his life. At that time, Roch had been for a series of medical tests and we were waiting for the next appointment with the neurologist. One day, Roch came to me with that article, having picked up a free copy of The Mail at the gym, and simply said, 'Read this.' So I did. Every symptom matched Roch's. We didn't speak about it again, until weeks after we knew the truth. Then we acknowledged to each other that in fact, that article had prepared us for the news. Although it did come as something of a shock, it was not entirely unexpected.

So it felt strange to meet him and to hear him speak. His speech was very powerful - beautifully written and constructed and delivered with humour and passion. He is confined to a wheelchair now, and his arms and hands are affected, but he can still talk. Although the statistics show that 50% of people diagnosed with MND die within 14 months of diagnosis, he is conscious that he has beaten these odds (incidentally, as you know, in two months, we can say the same of Roch). He said that Motor Neurone Disease is merciful in three ways. Firstly, because it gives you, (the sufferer) a chance to adjust to each change as it happens, secondly because it allows you to experience everything with an intensity only given to those who know their time is limited and thirdly, because it gives you the chance to say goodbye to those you love. ( As he said this, I noticed a woman standing near us. Her eyes filled and she set down her glass and left the room. I wondered who she had had to say goodbye to. I saw her later in the House of Commons shop, helping her colleague to choose teddy bear key rings, but I could tell her heart wasn't in it).

He said if someone had told him last year that he would be sitting in his wheelchair in his garden in Devon, feeling contentment, he would not have believed them. He told us that if it had not been for the loving way in which his wife cared for him, he would be dead. It was very moving. He urged those Parliamentarians present to work for a National Strategy for MND, to ensure an equitable and consistent service across the country for sufferers in life and in death, that national guidelines for health professionals are put in place. That existing NHS funds can be used for this. That bad care costs more than good care. These were the messages we were all there to lobby for, I was just sorry there weren't more Parliamentarians present to hear Chris Woodhead deliver them with such a personal intensity.

Afterwards, we slowly made our way to the South Bank and had a meal out. There were two people at the next table, having some kind of business meeting. At one point the woman's male companion remarked that he had once had occasion to meet Chris Woodhead. Roch and I immediately ceased our conversation to listen (it wasn't hard to hear what they were saying). They agreed that he was 'a plonker' and then the woman said 'Of course, he's terribly ill now.' I felt that we really should say something. I felt we owed it to the man we had heard speak so movingly on the issue closest to our hearts and I said as much to Roch. Roch shook his head and just as I was trying to decide what pithy comment I could make as we left, Roch turned to them and interrupted their conversation. He apologised and admitted that he, too, had thought Chris Woodhead was a plonker when he was Chief Inspector of Schools...but he explained where we had been and why and how impressed we had been by him. I don't know what they made of us. I know I was disappointed that they didn't have the added embarrassment of seeing Roch limp past them with the stick, as they left before we did. But you can't have everything and it had been a satisfactory day, all told.

Here we go, here we go...

Isn't the World Cup a great thing? Such a distraction. I think even Thierry Henry heard the roar of jubilation in this house when Mexico scored that first goal. What goes around, comes around M. Henry. Mexico, I salute you for the joy you brought to us all, but especially to my Tom. Now, will France go out? Fingers crossed. We're not bitter...



Well, Roch and I are off again to the Houses of Parliament on Monday, to assist the MND Association's campaign for a National Strategy for MND. I believe Chris Woodhead will be handing in the Petition at Number 10 and afterwards, we meet at a Reception at the House of Commons. They are hoping for a good turnout of MPs and we are all expected to do our bit at lobbying for the cause. We're looking forward to it. You may remember that Roch gave evidence before the Joint Party Committee in February (did I mention this?) and we went back for the publication of the Report in March. I'll let you know how it goes on Monday.



In other news...plans for the house continue and next step is choosing a kitchen! The work will be done in stages and the first stage will be the installation of the new kitchen. For those of you familiar with the house, the kitchen will be in the back room. Once the new kitchen is in, the old kitchen will be ripped out and the wet room will take its place. We had Builder Andy here on Wednesday, and there was the usual head shaking and tut tutting as he took note of the re-wiring that would have to be done, the radiators that need to be moved etc. The biggest regret for me will be the loss of our lovely original, restored floorboards in the sitting room (not to mention my carefully chosen tiles in front of the fireplace). I suppose that's shallow - but I do sigh. We have three different floor levels downstairs and to raise the floor in the sitting room (without having to take out a second mortgage, that is) they will have to put laminate down over my original restored...we've been there. Never mind. Has to be done.

A year tomorrow

So tomorrow is 16th June. A full year since Professor Kaplan gave us the news. I remember sitting in a narrow hallway outside his room. I stared at a sign on the opposite wall which said
'Apologies for the inconvenience caused by the refurburbishment' (sic) and watched another couple nearby who looked just as small and scared as I felt. I think Roch and I both knew it wasn't going to be good news but we were stunned anyway. It was a really hot day and afterwards we went for lunch in Twickenham. Both of us cried a bit. And now a year later, we've had a good year, like I said in my last post. Maybe what we're feeling is the knowledge that each year now will be not quite so good as the one before. And I keep telling myself that I need to live in the moment and I know it's true, but somehow I'm finding it more difficult than ever.

I went round to the corner shop yesterday and the lovely guy there asked me how my husband was. He said he hadn't seen him for a long time. I suddenly thought - is that too far for him to walk now? I realised I hadn't noticed him going round there lately. Maybe it is too far. Although on Sunday we went to Twickenham and had a stroll around. He did say it would have been easier with the hated rollator, which is in the Berlingo now, but seldom used.

There is one thing that is guaranteed to cheer me up. Guess what it is? Today I drove round the corner of our road and the first person I saw was Roch. I immediately felt better, lighter. He can drive me crazy sometimes, but no-one is there for me like him. He's my man.

Unlucky

Well it's nearly a year now since the diagnosis. It's true that we didn't expect to be doing so well. He's still walking, although he's much slower now. People are noticing this and commenting, but they are also saying how lucky he is to be doing so well. I guess that's true but pardon us if we don't feel so lucky.

A year on and we've been to New York, we've had a big Christmas Party, he's still working full time (more or less) and we're off to Venice next month. So shouldn't I be feeling more positive? I am reminded of a remark made to me some weeks after he was diagnosed, when a well meaning person said "So, you must be getting used to the idea now?" Used to the idea? What did that mean? Which part? Used to the idea that I know my husband will die young, will die before I will (unless I am struck down in the meantime)? Or used to the idea that life as I know it will never be the same again? Used to the idea that slowly he will lose all muscle function and become completely reliant on me?...You get the idea.

I have been feeling pretty crap about it all lately. I have retreated somewhat from the public eye and for the most part, avoided contact with those I don't absolutely have to see or speak to. My tolerance level has gone down. I just can't be bothered with small talk. I think I'm ok at home - with the kids and with Roch and although it's sometimes a strain at the start of my shifts in work, before I have made the transition to 'Missing' and slipped into professional mode, after a while there I settle into the tasks and routine and MND recedes from the forefront of my brain. It's a relief.

You know what? I don't think I'm used to the idea yet.

Let's not do that again...

I go to bed with that familiar pain through the side of my head, feeling the connecting lurch of nausea with every movement. With a sinking feeling, I know I am heading down the black hole. There is no way of knowing when I will emerge.

Later, he joins me in bed. My stomach churns with every movement he makes and I protest. His reply is sharp and although I know he is always upset when I'm ill and he is feeling down anyway, I'm too far gone to care. I don't think I can answer anyway. I put on my eye mask and find my ear plugs and try to sleep. I must fall asleep because at 2am I wake. It is a hot night and the bed is suffocating. The pain in my head is dreadful and my stomach heaves. I rush into the bathroom to grab the plastic waste bin. Something tells me both ends are about to erupt. I sit on the toilet, cradling the bin on my lap and let Mother Nature take her course. Eventually, trembling, I clean myself and the bin, moving as slowly as I can because of the pain in my head. I get back into bed.

I know he's awake but I can't help that. We don't speak. I lie in the dark and throughout the rest of the night the pattern is repeated until all that's left to come up is a green bile. It hasn't been like this in a long time. Between bouts, I worry about what will happen when he can no longer do things for himself and I am felled by a migraine like this. If he needs me to adjust his position, help him to drink something, help him to pee? This does not do my head any good. I try not to think, push two fingers against the pressure point of pain, try to take deep breaths, but nothing helps. I know he will be exhausted tomorrow, although he is asleep now. His snoring is much worse tonight and my earplugs don't seem to be helping. Maybe I'm just feeling more sensitive.

It's a relief when I notice the darkness in the room is lessening. After one visit to the bathroom I take a motillium for the sickness but that comes up too. Now I wonder if it's worth taking another imigran (I took one before I came to bed but that's long gone). It's over four hours now. Feeling desperate - the pain has not lessened - I stagger to the wardrobe and grope for the medication. Half an hour later I find myself cradling the bin again. This time there's an improvement as there's no longer any need to leave the bed and I'm grateful for this. But it means I'm disturbing him again with spectacular sounds of retching and heaving. Eventually I doze, the pain is still there but my stomach appears to be settling. There's a movement, it must be morning. He's getting up.

"Are you cross with me?" He asks.
It must be because I haven't spoken to him all night. Now I feel mean. "I just can't talk right now, it makes me want to spew." I explain.
"I was hopeless last night," he says. "I couldn't help".
"Don't worry," I say from the depths of the pillow. "We'll talk later."

And we do, when it is evening, and I have slept for most of the day, and kept an imigran down successfully. I have emerged from the black hole once again, totally drained and wobbly on my feet. To be without that pain is like a wonderful gift. I am so grateful to be free of it. Tom has been in to ask me to test him for his RE exam tomorrow, and I have been able to do it! Thank God Maura was here. She has taken my place for the day, and made the evening meal, intervened in the family conflicts, been there for them all - and returned from her trip to Richmond with a gift for me. Has there ever been a better sister?

And so we talk, he and I. He feels bad because he couldn't help me last night. I feel bad because I kept him awake and I tell him how I worried about the future in the long watches of the night. He had the same thoughts. We agree that we will find a way, that we will cope. Now we know, we have to plan for these times. Things seem a bit better now.

He sits on the bed and holds my hand. "That was a dark night," I say.
"It was. Let's not do that again." I smile at that. It's such a Roch thing to say.

At the Hospice yesterday

Well, we did go to the Hospice yesterday. We were asked to be part of a planning meeting for the Hospice Families Open Day in July. The staff involved wanted the parents' input, ideas about what might work for their children, the kinds of activities to organise. It was my second visit and I don't find it easy. I'm hoping with each visit it will get easier.



I thought it was a useful meeting and I hope Kate and Tom do come to the Open Day. It won't be easy for them, no matter what kinds of activities are lined up, but I am hopeful, given some of the input from staff, that if they do come along, it will help to dispel some of the myths around the dreaded 'Hospice' word. They might come to see the staff there as a kind of 'bank' of people there to support them. I am getting there with that.




Two other sets of parents were there and I suppose for me, that was the most difficult part. Steve is 42. He has motor neurone disease and is at a more advanced stage of the illness than Roch. He and his wife, Tracey have three young children. I was surprised at how hard seeing Steve hit me. Bit of a reality check. I know Roch and Steve have been in contact through the PLM website since the meeting and I hope Steve will understand what I mean. I wanted to talk to him, and to Tracey but I didn't get the chance to talk to either of them. I felt shy, too. I wanted to ask him questions about how he was communicating - how did his 'communication device' work, exactly? I wondered at how calm and capable Tracey seemed. I ask myself, will I be able to be like that? Seemingly relaxed and accepting. I felt such admiration for her, for both of them.



Roch talked to Steve for a while and I know he found it helpful. The way the staff made sure Steve was placed beside him seemed a bit contrived to him, but I think if they did plan it that way, it seemed to work for Roch and I hope it worked for Steve. Steve has a blog too and we read some of his posts at home later on. Very interesting and helpful.



During the meeting, Tracey asked if grandparents and cousins could come along on the day, and the reply was that as they were part of their support network - yes ok. Later I felt a rising panic. I don't have a family support network here. It's basically just down to me. But then, a lot of family members cope on their own - I mean day to day, with carers. I guess I'll be one of them. It's pretty scary tho'.



I look forward to meeting Steve and Tracey again at the Open Day.

Families - real and imagined.

We had a good night, last night. Roch and I went to see a play called 'Little Gem' at the Bush Theatre. It's a play about Dubliners, a Dublin family in fact and the playwright really got it spot on. The accents, yes, but also all the 'Dublinese', all those witty and sometimes outrageous things that Dubliners say. Nowhere on earth can you find the same turn of phrase and the same level of constant cursing! Lots of 'spaz' and 'hungas' and 'Jaaysus..'

The play is very funny but also very moving. In fact, we found it a bit close to the bone towards the end. If you ever see it, you'll know why, but I won't spoil it for you. Private tears were shed and hands were clasped in the darkness of the theatre. So it's sad, too, but it's not dreary.


We met the cast afterwards and two of them are from Dublin. Anita Reeves is from Terenure, in fact (my neck of the woods). We really enjoyed the night, so thank you Dympna, for arranging the tickets. I must share one line in the play with you. It really tickled me. One of the characters, after an 'episode' in work, is sent by her employers to see a counsellor - or what she calls 'a head doctor'. The counsellor suggests that she does one nice thing for herself in the coming week. She manages to attempt one thing and at her next appointment, her counsellor rewards her by telling her to do two nice things for herself the following week.


"F*** her! Now I've somethin' else to worry abou'!" Love it.

Donna was here today. Hospice Nurse. We're getting to know her, and she's getting to know us - and if I haven't said it before, she's been really helpful. Roch gets on well with her and he trusts her I think. That's important. Tomorrow we go to the Hospice to attend a meeting for parents. They are having an Open Day in July and you never know, the children might come. I think Roch would like them to come along. But if they don't want to - well, you can't force these things. I'm not sure if they're ready. The idea is that they don't just associate the Hospice with death. It's also a peaceful place and a place of respite, where there is support for families as well as help for patients - all along the way. Anyway, the meeting is for parents in advance of the Open Day, as I say. Let's see how it goes. I'll let you know.

Roch and the rollator

Roch and the Rollator

Thanks for the picture, Mairt. If you look very closely, you'll see we kept a trophy of your visit (Lorcan's shrunken head on the gate post...?)

In other news (so to speak)...I am aware now that a worry for Roch is my keeping fit and well. After all, I am his carer - and as time goes on, he will rely on me more and more. Throughout our relationship, he's the one who has looked after me, me and my migraines. It worries me, too. What if something happens to me? What if I succumb to a terminal illness? It' a nightmare scenario for Roch. It must be a worry for every carer and those they care for. So I have good news for Roch. I have a really good doctor, who sent me for blood tests recently, and the results came back last week. All clear! Well, my cholesterol is a tad high, but not enough to worry about and she's going to keep an eye on it. Everything is under control. (Shurely shome mishtake?)

A National Strategy for MND

We went to the MND Association local branch meeting this afternoon. This is the second meeting I've attended. The first was the Christmas meeting and it really didn't work for me, Father Christmas and mulled wine notwithstanding. It so didn't work for me that I just couldn't bring myself to go to the last meeting. However I thought I'd give it another go and today was better, perhaps it was because there was a focus. Someone was there from National Office to talk to us about the Campaign for a National Strategy for MND, and the new Regional Care Development Officer was there to introduce herself to the branch members present. There was a discussion afterwards and I surprised myself by getting involved. I was feeling quite bolshie and I think that might have come across a bit...but hey, make your mark, Deirdre!

Hearing more about the National Strategy Campaign was interesting, especially for Roch and me. In February, Roch was invited by the MND association to give evidence before an All Party Committee of the House of Commons, whose brief was to prepare a Report on a National Strategy and later, in March, we were invited to the publication of their Report. At the moment, there is a huge discrepancy across the country in the quality of care and services for people with MND. It really does depend on where you live and that is just wrong. If anyone reading this wants to read more about it or sign the petition, you can go to

http://www.mnd2010.org/petition

and do just that!

Somewhere over the rainbow

I'm thinking of investing in a pair of boxing gloves. Yes, really. I think it would really help to be able to punch something. Of course, I'd have to actually buy the punchbag too (in case anyone was worried about what I'd be punching). I'm finding it difficult to 'access my anger'. Oh, it's there all right...as Paul Brady would say, 'Don't come too close..'

I talked to my counsellor about crying the other day. I don't seem to be doing it enough. I feel sad all the time, I mean, it's always there - the default setting, if you like. I wondered if I should make an effort, you know, sit down and feel it, try to let it out? But we agreed that that would be false. I have to let it happen naturally. I think she was encouraged when I told her that I had cried on Saturday, watching TV. I don't know if you watch 'Over the Rainbow', the search for a West End 'Dorothy'? Now admittedly there's a lot there to cry over - Graham Norton's wardrobe, Andrew Lloyd Webber's facial expressions...however these left me unmoved. But as I watched young Jenny ascend to the heavens on her sickle moon, singing her heart out - 'Somewhere Over the Rainbow' - her West End dream shattered, well, I cried. I mean, those lyrics - 'Birds fly over the rainbow, why then oh why can't I?'

I think we all know I wasn't crying for Jenny.

Anyway, it's a good thing to cry, and I shouldn't stop myself. I admit that on that occasion, I did stop myself. I mean, how embarrassing was that? But next time, I will sob unashamedly.

I will diminish and go into the West

Today Roch told me about the person he misses the most. Himself. He misses the Roch who was strong, who could 'do' things, who could walk fast, the Roch who could run. The Roch with strength in his hands.

He quoted a line from 'The Lord of the Rings',
"I will diminish, and go into the West..."
Galadriel says this after she resists the ring of power.

Your strength is diminishing, yes, I said, but remember the rest of that line.

"I will diminish, and go into the West...and remain Galadriel."

Roch will remain Roch, the essence of Roch will remain unchanged. He will be the same person and yes, he will diminish, his physical powers will leave him but nothing can ever diminish the essence of Roch.

Well, he did it. The ballot boxes were sealed and delivered and all went well. That was his election swan song. I did ask him if there was to be another election in a few months' time, would he preside again? But he has made his decision. Much as H&F would love to have a Presiding Officer doing the job from his wheelchair, they will be deprived of the privilege (and good press). He is very pleased with himself and I am very proud of him.

Lovely, lovely to see Marianne and Christy (Roch's sister and her husband) this weekend. Great to see you guys and spend some time together. Thank goodness for Facebook Marie, as you know how I hate phone calls...

In other news...the Berlingo is a done deal and we hope it won't be too long before Citroen get one to us. The next project is Venice and I'm working on that. It really has to be this summer. Don't much fancy pushing a wheelchair round Venice. I'm thinking early July...it helps to start planning something lovely. Ash clouds permitting of course...

Chilli Pepper Plants and Belgian Buns...

Have you ever noticed how many people with walking aids there are in garden centres? Well, I have. Maybe it's because gardening is a a pastime people turn to as they get older, maybe it's because garden centres are popular places to go for those less mobile. There's usually a coffee shop, always a toilet and just enough space to stroll round without getting too tired. There's also the bonus of being surrounded by the beauty and scent of growing things. Now this is not something I had thought about before the monkey, but I've been noticing it ever since. Somehow we always seem to have conversations about the monkey in the coffee shop at Squires garden centre, Roch and I. The first time we went there was not long before the diagnosis was confirmed, and I remember noticing people in wheelchairs, people with walking sticks and I found myself imagining what it would be like to bring him there in a wheelchair. Would he even want to come with me? We found ourselves there again on Sunday afternoon. It was really cold and his walking wasn't too good. He was very slow. The last time we were there together he really wasn't that slow. You know, I don't think he had a walking stick last time - or did he? (So now I'm thinking, when was that, how long ago, calculating time and changes)...Anyway, on Sunday it could have been the cold affecting him a bit too, as we believe it does. Movement very stiff and slow. We sat in the coffee shop and ended up having a rather sad little conversation over the Belgian buns and coffee. Mind you, it's a great garden centre. We came away with a selection of herbs, a lavender, a trailing geranium and a chilli pepper plant. The car smelt delicious all the way home. Next time you're in a garden centre, see if you spot any walking aids or wheelchairs. By the way, I'm not saying it's a bad thing, I'm just making an observation.

Roch Maher, Presiding Officer, we salute you!

So, Election Day on Thursday. That, I imagine, will mean different things to many different people. For Roch, it will be a very special day. It will be his last Election as Presiding Officer. For those of you who don't know, Roch has been involved in every Election, National and Local, since coming to London in 1986 and for every one of them, he has been Presiding Officer at a Polling station in Hammersmith & Fulham. It's a job he loves doing. It involves getting up at the crack of dawn, taking on a helluva lot of responsibility for the day and getting home extremely late that night. Typically, Roch revels in it. He has always been a political animal and being so involved in the actual Election process is grist to his mill. He worries about it beforehand and makes meticulous preparation. Tradition has it that provisions for the day include the obligatory sausage sandwiches and that cold beer awaits his return and this time will be no different. But he says it will be the last time for him. Even with diminished stamina and declining strength, he feels he can still carry out his duties just as efficiently on May 6th, but he can't see himself doing it again. Well, on behalf of the electorate of Hammersmith & Fulham, thank you Roch, for years of dedicated service. Enjoy the Day! Cold beer will await you on your return...

A toast to Roch's mother

Well, it would have been Mary's birthday yesterday. So I think that deserves some space on the Blog. Roch's mother. We raised a glass to her. She never knew about the monkey. I know that was hard for Roch. Which of us wouldn't want a mother's comfort in his position? We were sitting quietly in the room where she was laid out, the day before the funeral, when someone called Roch away and I found myself alone with her. I told her then that Roch had motor neurone disease and I promised her that I would look after him for her. I know Mary heard me.

Enter the Dragon

So yesterday we had a 'site meeting' at the house. Very interesting. Occupational Therapist and Architect and Roch and me. They looked over the plans for the works to the house and the OT told us what would be necessary and the Architect thought about how that could be done. Just one word about the Architect, Chris. He's a star. That's all I'll say. I don't want to embarrass the lad, so I'll say no more.

It's kind of hard to contemplate the changes to the house. Roch is very stoic about it all. When we're discussing options and they're asking whether we want certain features to be permanent - such as ramps, or customising the kitchen, he is firm about making it as easy as possible to return the house to a kind of normality 'afterwards'. It's not easy to hear. I could see it was difficult for him.

It's going to be so disruptive and it will be difficult for the kids. But it has to be done and it has to be done soon. Watch this space for developments.

Good news re: Dragon technology and Ability Net. Someone came yesterday from Ability Net to set up and start the training for Roch. It's good. Actually, it's bloody brilliant. (Voice activated software). Heartfelt thanks to the MND Association. Interesting that the software won't recognise the word 'Roch'. It really can't get it's head round it! Many humans have the same problem...

The old homestead

Feeling very low over the past few days. Maura and I went to the garden centre at Syon Park on Tuesday and it was a trip down memory lane in a way. We took the train and walked down Syon Lane, past the road leading to the old homestead. Maura remarked about how strange it felt to be walking along there without a buggy. I know what she meant. I had been feeling oppressed by a weight of memories. That's where they were babies, toddlers, where Roch and I lived as a young couple starting out on our married life together. So many fond memories of life in that little house. Kate says that she has lovely childhood memories of our time there (I rate that as quite an achievement). I'm not saying they were always happy times. Sometimes it was lonely and we had our bad times too. I'm not seeing it through rose tinted glasses by any means. But I felt such a feeling of loss. I felt so sad. For all of us, but mostly for Roch. For our little foursome as we were then.

We sat in the coffee shop (well, outside - it was a nice day) and I remembered being in the old coffee shop at Syon House with Roch, when Kate was a tiny baby. We had to leave because she screamed so loudly she was disturbing the other customers. My God how she screamed. Actually we had a terrible time with her (trauma at birth is my theory) for weeks after she was born. But that's all part of our history. It's what makes us a family.

Anyway I kind of went through the motions, choosing plants and making small talk but I felt disconnected, like somehow I was watching myself from a distance and observing other people from an entirely different place, a very sad place.

Link to Facebook

Well, I've linked my blog to my new facebook page so now it's public. That's a bit scary...but I'm feeling reckless.
Two days of 10 hour shifts behind me. I was looking forward to today so much! Last night Roch picked me up after work and we went for a Chinese meal to our favourite Chinese restaurant. There I was, bleary eyed, mascara under each eye, head buzzing, looking, as I well know, like crap...but the lure of won ton soup proved too much. Also, I don't have the luxury these days of thinking, "not this time, too tired, maybe another time.." How many other times will there be? Lots, hopefully, but time is passing. It's almost a year now since the monkey entered our lives. Inch by inch it crawls forward on its dirty little paws...you know I can see it in my mind and in a fantasy very dear to me, I beat it to death with a club...

Roch is preoccupied by thoughts of retirement. It's such a conundrum. If he retires soon, will he have many years left (it's money, too) at home, trying to fill the days? Or is he 'wasting' time now, tiring himself out when he may not have many years left? He does need the social aspect of working. It's lonely being at home sometimes - and I'm not counting the company of the monkey.
I think this is very much on his mind at the moment.

We're looking forward to the arrival of the Citroen Bejingo. That will set the neighbours talking! First the windows, then the new motor. The new motor, of course, will be paid for by the DLA money, but they don't know that. Don't get me wrong, lovely neighbours.

Facebook saddo

Well, we have our new windows and you know what? They are gorgeous. There is no 'making good' to be done. Everything is perfect. It's like having a new house! I am exhausted however. As members of my family will tell you, I just can't stop 'putting things to rights' (it's that being in control thing again). It drives everyone mad and I end up like a wet rag. I did have help today, though. Another good thing in my life at the moment - someone who comes every fortnight and helps in the house. Just helps me to keep on top of things. I am thankful for all the little things.

Tom has persuaded me to join Facebook, so I'm there now (just don't write on my wall, mum) - no photo just a faceless silhouette - I am still the family saddo, having the grand total of 11 friends.

Had a conversation with someone yesterday who I must say with the best of intentions (I really don't know this person at all) was advising me about the planned works to the house but I was getting fed up listening to it. "It'll be a mess, love, everything'll be filthy, you'll need (list follows of the never ending list of jobs to be done..." then "You'll need all the light switches changing." I think, 'What?' he nods knowingly, a little sadly. "Wheelchair.." he murmurs. O for God's sake. Now I'm really narked. So I decide to put an end to it. "Well, he won't be able to move his arms, will he? So that's one job we won't need to do." That shut him up.


Next week we're having a site meeting with the architect and the occupational therapist. So that's the next step. Oh and we did that test drive. So it looks like we'll be getting our motability car - well, Roch will. Looks good. The test drive was with the Salesman (a Millwall fan - good sales pitch. Fear of a good hiding if you don't buy...) and a French student who sat with me in the back and tried his own sales pitch once or twice but due to limited English failed miserably. We were sold on it anyway which was just as well...

Planned visits: Mairt and Lorcan coming over tomorrow. Hope they won't be disappointed with the Arsenal at the Emirates (Don't mention Wigan) and - Maura arrives on Monday! Dear Maurie.

Patientslikeme

Well, it's been a while...lots of things going on here. At the moment we have two guys replacing some of the windows - so lots of noise etc. Oscar is demented - and risks certain death as he noses around outside, large pieces of wood just missing him (bam!) as they crash to the ground outside. What's that they say? Curiosity killed...I think he may have decided that discretion is the greater part of valour and the back garden is safer.

I have just joined Roch in registering on a world wide site called Patientstlikeme. We have joined an online community of patients with MND and their caregivers. It's a bit like Facebook but the patients can compare their monkey symptoms, chart their progress (or should I say decline), list their medications and if and how these are helping. Other members can comment. It's really interesting - but there's a kind of morbid curiosity in comparisons - how long has he had it, did it start with the same symptoms as Roch, how far gone is he now? So many people and with a huge variety of the monkey. Roch showed me one comment posted by a caregiver, whose husband died yesterday. He had not wanted any artificial interventions to help him stay alive. It was pneumonia at the end.



We also had news of another death. We met Glynis in February, when she and Roch, among others, gave evidence at the House of Commons. (The Joint Party House of Commons Committee on a National Strategy for Palliative Care). Glynis gave evidence in her role as her husband's carer. Graham had MND. Glynis got in touch to let us know that he had passed away last Friday. We got on really well with Glynis, who impressed us with her bravery, her openness and her rather black sense of humour...and our thoughts are with her now.



This is turning out to be a long one - mostly because I haven't been blogging lately. In other news...I really must tell you that my wonderful friend Cecilia came to visit last week and gave me one of her full body massages. It just helped so much. It's not just massage. It's being the focus of attention for a whole hour, it's about the importance of the human touch - it's about feeling cared for. It's a wonderful thing. Roch, you should re-consider...



Recent developments: we are test driving a Citroen Berlingo (already dubbed 'the Bejingo' in this house - you have to watch 'Scrubs' to get that one) tomorrow. This will be a 'motability' car and is basically a brand new car which is leased to Roch and I will be a named driver. The car is paid for with part of his DLA money each week, and insurance and maintenance is covered. We get the car for three years, and at the end of that time, we replace it with a new car. It's much easier for Roch to get in and out of it and the boot is large enough to hold a wheelchair (or the dreaded rollator). It'll be quite handy for our long-legged Tom, too. Watching him as he folds and unfolds himself in and out of the Corsa, like some human praying mantis - well, it's getting ridiculous. We'll keep the Corsa tho' and will have joined those legions of two car households. Now we have to go about organising the disabled space in front of the house. Watcher! No parking in our disabled space or else! Actually, I don't think you can police this kind of thing...

'Love each other or perish'.

All I will say about today is it's been difficult. It's all feeling difficult. We had a good day on Sunday - his sister Laura and her husband Dan spent some time with us and we had a lovely meal together at home. I hope it wasn't too overwhelming for Laura. Roch does want to talk about everything and it can feel a lot for people. Roch gave them 3 copies of a book called 'Tuesdays with Morrie', to pass round the family. It is an extraordinary book but it's pretty tough going. Morrie was a 78 year old US university professor who died of MND. This is the story of the final months of his life, as written by a former student who spent 12 Tuesdays with him before he died. It's not as depressing as you might think, although it's sad, of course. Morrie's philosophy can be summed up in a line he quotes from W.H. Auden, 'Love each other or perish' and it made me want to renew my passing acquaintance with the poet. It's strange because recently in conversation with my counsellor we agreed that all you can do is fill every day with love, so there it is, me and Morrie, we seem to have had the same idea. He said he was lucky, because he had been given an opportunity to say Goodbye, to his family, to his friends, to life. The author's life changed because of his friendship with Morrie. I wonder what Roch's family will make of it. You probably haven't heard the last of Morrie here...

Roll on, the Rollator!

Well, that last post was pretty heavy. It depresses me to read over it, so I won't! I remind myself that this is a record of how things are going, day by day, and it wouldn't be an honest record if I simply skipped the tough bits and it wouldn't give you a true picture of life with the monkey now, would it?



Thank Goodness for some Spring weather. Yesterday, it was a glorious day and we went out for lunch. Roch wanted to go back to a little Italian restaurant in Twickenham, where we went first on 16th June last. Is that date significant, you may ask yourself? Well, yes because that was the DAY OF THE DIAGNOSIS. I remember we sat there, stunned, eyes filling now and then and looked at each other over the food in a kind of disbelief. I suppose we were in a state of shock...but the omelettes were delicious and we've been back since. A kind of patina of sadness surrounds our lunch experiences there but we keep going back. I look at our fellow diners and in a funny way I can't help feeling somehow more privileged than them (strange but true). We know that time is limited and I think that gives the edge to every experience, even omelettes for lunch.



I hadn't accompanied Roch and the Rollator yet, although he has used it a couple of times, walking down to the High Street with our neighbour, Christian. Anyway, in the afternoon I suggested that we bring it out for a spin. I felt a little nervous about it - I mean it does scream disability, really and the last thing you want is to draw attention to the situation in public. No-one wants to look or feel different and I think it does make him feel vulnerable. I think he was worried that I'd be embarrassed. But I wasn't, not at all. I do find myself feeling a bit defensive. But in general people don't seem that interested. You get some curious glances but hey it has to be done. Anything that makes it easier for him, that means he can walk farther for longer, well, if he's up for it, then I am too. It was noticeable how much faster he can walk - with the stick, he's much slower. In all honesty, it was quite fun (well, for me, anyway). Beautiful day, gorgeous sunshine, all those magnificent Magnolia trees in bloom along the way. As far as I'm concerned the professionals are right. Anything that helps us to enjoy life together, for as long as possible, is a Good Thing. Roll on, the Rollator is what I say.

Fear

Roch has pointed out that I'm not saying much about my feelings on my blog. It's a fair point. After all, that was one of the ideas behind it. Well, I'll give it a try today. I didn't sleep well last night and I think it was because of Fear. I kept waking up and when I was asleep, I dreamt. I can only remember one dream, but I remember it in some detail. I suppose you would call it a nightmare. I am at home (in a house like my childhood home). I am not alone, there is some kind of celebration and family and friends are there. I remember the face of one particular friend and she is all dressed up for the occasion. It feels like a wedding and might even be my wedding. I feel beautiful and beloved. But in a '28 days later' twist, I become aware of a threat coming from outside. Suddenly it is of the utmost importance that the house is made secure and I go to the front of the house, filled with dread, my hands shaking as I attempt to shut and lock the door. My panic rises as I see a group of people at the gate, staring at me. They begin to advance up the driveway. They don't look infected yet I know they bring death and destruction with them. I am consumed with fear. But the door will not lock. As they come closer I start to plead with them. I lie to them, telling them that I have small children and begging them to leave us alone. The door refuses to lock and still they advance.





At this point, my dream ended. When I woke up I was filled with dread and I couldn't stop thinking about being without Roch. About how our life together will be destroyed, how I will have to face life without him. I lay there in fear. We have been together now since the summer of 1987 and married since August 1990. There are some things we don't agree on, there are times when we drive each other crazy but our partnership is equal and what on earth will I do without him? And how will it be when he relies completely on me and I can't ask Roch anymore? 'In the dark watches of the night', I know I felt only a faint shadow of the loneliness ahead.



In the morning I got up, got ready and went to work, because what else can I do? Just carry on as normal. I told my line manager that I was feeling a bit fragile (my eyes started to fill at this point), she was sympathetic, and then I got on with the work. It felt like a relief and I welcomed it, but I was knackered so I left early and came home to bed for a while.



Kate is cooking Roch's signature dish 'Spaghetti Carb O'Mahera' now (under close supervision I might add) and right now I'm looking forward to eating it.

4-1 and 6-3 on aggregate

Well, good-bye Champions League. Thank you Messi. Need I say more? Kick a man when he's down.

Well, we've still got the Premiership...

Easter

Good Friday



Greetings from Dublin. I'm writing this in Maura's lovely sitting room, using her laptop. We are here for the Easter weekend and excuse me if I'm somewhat incoherent but we were up at the unearthly hour of 5am this morning to catch an early flight. For only the second time i requested special assistance for Roch - the first time was for our journey to and from Tenerife in February. This time the kids were with us and there was a very awkward moment at the special assistance desk as he was clearly undecided about whether he wanted us to wait with him and then accompany him to the gate or meet him there. I couldn't read him. We went on to the gate without him and he told me later he felt that was the right thing for him. He said he didn't want the children to see him in a wheelchair for the first time at the airport. Not sure why. By the way, mental note to myself, Aer Lingus changed his seat and put him in a seat at the front of the plane but we were 25 rows behind him. Mustn't let that happen again.

Easter Monday

Well, Good Friday seems a long time ago now and here I am back in London reading what I wrote then. It was a good weekend although Roch picked up a filthy cold. Remind me never to book such early flights again. It was torture getting up this morning although the journey itself was very smooth indeed. It's sunny out now and the house is quiet as the rest of the family are asleep. The children did see him in a wheelchair today for the first time. It felt strange to me and I know to the children too. Is there such a thing as wheelchair etiquette? The woman who pushed the wheelchair made sure they were alongside us all the way to baggage reclaim so in the end we just carried on as if it was the most normal thing in the world for us to walk along beside his wheelchair. And that was the first step in making it the most normal thing in the world.

Earlier in our journey, at the Gate, another hairy moment when a member of the ground staff called for all those needing Special Assistance to come forward. So he did and when he did, she told him to stand aside as he would be boarded last! There was nowhere for him to sit near the desk so he walked slowly back to us feeling pretty embarrassed. So when I got to the top of the q, well, Roch said he could see me 'having a go' but I wasn't really - 'Can you explain to me,' were my opening words and she did try to, but it seemed daft to me. So I just asked her to explain it to him, as he was pretty angry about being called forward and then sent back, as if he was trying to skip the q. She then obligingly began an apology to the startled gentleman standing next to me. I corrected her and the children and I went on to board. Happily this time I had discussed the seating arrangements at check in and we all sat together at the front of the plane. Very handy for the toilet.





It's hard for his family when they see the changes in him at first hand. This time the cold weather seemed to make the tremor in his hands worse at times and I think it affects his walking too (a big thanks to Lorc for Roch's new walking stick!). It's hard for him being home I think. He wonders what changes will affect his next visit. I wonder that too. I worry a bit about the practicalities of it. The journey will get more difficult - but not impossible. It always feels a bit sad to me, going home. It's like stepping into the past for me - I think I get how that feeling may be multiplied for him. I think about my childhood and the way things used to be at home, or my young adulthood and what exciting times lay before me - visits with the children when they were small and my mother was more vigorous. That was our first visit home together since his mother's funeral and we all feel her absence.





But all that said, it was a good weekend and although it was a bit of a flying visit, it was worth it. We spent time with his family and mine and with some of our dearest friends. I enjoyed Saturday night with his family and it was great to see him with the clan, having a few drinks and a good laugh (and a tasty snack). That's the secret, enjoy the moment, live in the present and try not to worry too much about how the future will unfold.

Anna, Susannah and Cesc Fabregas

Yesterday more aids to living with the monkey arrived. 'Ability Net' brought his laptop with Kid Trac trackball and Dragon software (voice activated). Through their Remote training, they will teach him how to use this and he will be able to work from home when the time comes, but also use it for lots of other things. It's amazing stuff - his laptop will recognize his voice and the software is so advanced, we're told that as his voice gets more tired throughout the day, it can be programmed to recognize his 'morning' voice and his 'evening' voice. All this - laptop, software, training, is provided by 'Ability Net' and paid for by the MND Association. It's all on loan and will go back sometime in the future, when it's no longer required. That will be my responsibility.





We really are very lucky. We have such wonderful support. Today Anna (physio) and Susannah (OT) came to visit. Susannah was anxious to inspect the aids she had arranged to be installed by Medequip last week and Anna had come to talk to Roch about using the rollator and generally for a catch-up on how he's doing with exercises etc. They are young, very professional, very dedicated and (if I may be allowed to say so) also very attractive. I'm sure that's a bit of a bonus for Roch! I think they like him a lot. They manage to have a good laugh with him. Roch can usually find something to joke about. But they are very sensitive young women, who listen intently to what he has to say, who never lose eye contact when he is finding it difficult to talk about aspects of his illness which he finds distressing and who never fail to leave us feeling somehow vaguely cheered by our contact with them. They can still come up with solutions to most of the physical difficulties he is experiencing at present and take an obvious pleasure in the success of their suggestions. Completely professional and utterly charming. Unfortunately both are moving on within the next few months. I hope their replacements will live up to the standards they set.



We had a good evening yesterday. First leg of the Champions League Quarter Finals. The whole family glued to the TV, with our good friend and neighbour Christian. The Arsenal v Barca! How we groaned through the first half hour. Our spirits rose at half time when miraculously the score was nil all, only to be dashed by Ibrahimovic 23 seconds into the second half. 2-0 down we were close to despair and the family sat in tense silence. But our celebrations were second only to those of Walcott himself when he scored in the 69th minute (Christian said he wished he had had a camera to record the sight). After Fabregas' penalty goal Kate and I winced in sympathy as he limped gamely round the pitch! We held our breath until the whistle blew. We were exhausted but what a great night!

The Job

Roch's still working full time. I really admire him for his determination but his job is even more demanding and time-consuming than before. You see, he is so good at his job that I think it is incredibly difficult for him to contemplate any kind of delegation. He feels he does it best and that's probably true. So, so hard for him to contemplate watching other people take over tasks he knows he could do better. But there seems to be so much for him to do and it is so tiring for him and it takes so much out of him, so that when he comes home, he's knackered. He will have to pull back at some point. He just doesn't want to give in yet. The plan is to work at home on Wednesdays - I'm just hoping that doesn't mean cramming too much into the other four working days. But he shouldn't have to be thinking about this. He shouldn't have to be pulling back. None of it should be happening to him. He's in the prime of his working life. So I can see his reluctance to make concessions to the monkey.


Anyway, he knows what I think, I've played the nagging wife to perfection lately. His OT is coming to see us on Thursday so we'll see if he mentions work to her. It's a fine balance - I know to him it's like giving in, but he's so tired in the evenings he's not being fair to himself...or to us. We'd like him to have some energy in the evenings. Also, exhaustion can mean a short fuse - put that in the mix with two teenagers (one with red hair) and I think you can imagine the rest. One thing he must find refreshing is that the monkey's presence does not mean either of our teenagers treat Dad any differently during the - shall we say - sometimes heated exchanges. Roch and I, of course, never argue at all...well, that's not true, but the monkey has made a difference. We're much more 'mindful' of each other. I think he'd agree. On reflection, the reasons for that could probably bear closer scrutiny. Am I so careful with him because the monkey's on his back? Is he so careful with me because he doesn't want to upset his Carer (after all, I am a self-confessed control freak who will ultimately have complete control over his life - now there's a scary thought, for both of us). I might just raise the point with him...

A hill to climb

I've been looking through entries in my diary notebook and pretty major landmarks are recorded there, some of which I look forward to sharing later on. The very first entry is interesting. Boy, was I angry. I took the time to record some of the reactions I encountered to the news of the diagnosis. Now, let me say at this point that some people's responses were terrific and that has to go on record. But I think it's worth quoting part of what I wrote back in June. It might help someone somewhere. These are some edited highlights.


"I'm angry with people's reactions. No, wait, they can't help their reactions. So it's not that. I'm angry with how people think they can say ANYTHING to me about this. I understand that they feel they can't say things to him. They're afraid it might upset him. But don't they think what they say will affect me? ITS NOT OK FOLKS! Want some examples? A favourite way to begin is 'Do you realise...'


'Do you realise...he won't be able to swallow/speak/move?'


'Do you realise...you'll be his Carer?'


And a personal favourite - 'Do you realise...when he needs to go to the toilet - you'll have to be holding his penis?'


Doesn't it occur to them that since the Diagnosis I have read about MND, that I am finding out more and more in my own time, that I might not be ready to hear certain things yet? Listen, it's not my responsibility to look after YOUR feelings.


Also to those people who ask him if our sex life is affected - you didn't have the right to ask about it before - so what gives you the right to ask now?


Come on people, stop for a moment, remember you are talking to his wife. Don't you think she might have spent some time thinking about what this cruel, relentless, insidious disease will do to her darling, active, sociable, funny, loving, chatty husband?


Of course, the other explanation is that some people think I'm incredibly stupid and incapable of working any of this out for myself.


Yes, I know he will lose the ability to move, speak, swallow and eventually to breathe. Yes, I know I will be his Carer, and I welcome that role. Yes, and I know you all mean well and you care about him too. But listen, folks - give me a break, I'm not made of stone. Don't expect me to be the place you bring your grief. I have enough to do, to deal with my own.

Finally, to those who have kindly offered to 'say a few words' at his funeral, I have this to say,

'Thanks, but HE'S NOT DEAD YET!'"


I was pretty angry, wasn't I? I don't feel angry with those people any more and I've learned how to deal with unwanted expressions of sympathy. It was hard for people to know what to say, it still is. But as I said before, there were people who got it right for me. Here's just one example.

My friend Carmel called from New York when she heard the news. I had sent her an email to tell her about the arrival of the monkey. I remember Roch answered the call and they made small talk for a few minutes, then he passed the phone to me and brought the kids out for ice cream, because he knew I would want some time alone with her. When she knew we were alone, she simply said, 'You've a hill to climb.' My eyes filled with tears and they were partly tears of relief. It was all I needed to hear to feel understood.