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?'