Daily Life

We went shopping last weekend. The idea was to go to Squire's Garden Centre, but before getting the garden stuff Roch wanted to go to Cotton Trader's to look at a pair of shoes he thought might work with his 'foot ups' during the summer. It's hard to get suitable shoes that don't look like retirement home footwear. We parked in one of the 'disabled' spaces, not too far from the shop, so that Roch could use the sticks. The threshold wouldn't have been a problem for the wheelchair, but space was limited inside and besides, he just didn't want to use the chair. Inside the shoes were tried on (seating in a nice discreet corner - so not too embarrassing for him that I assisted him in taking the shoes on and off) and then he saw some shirts he liked. We made our way slowly round the racks of clothes and Roch chose some shirts to try on. So far so good. Inside the changing room there was a seat, so I closed the curtain on him sitting down. Every now and then I checked and luckily the three chosen items were all a success. He had to sit for a moment to rest, having tried on each garment in turn. Three shirts. No wonder his eyes filled.


He recovered himself quickly and made no protest when I suggested we bring the wheelchair into the garden centre. It's not difficult for me to push or maneouvre. It was a Sunday and the place was pretty crowded but once we were out in the sunshine, amongst the herbs, flowers and shrubs, it felt ok. It's funny, we went to Squire's quite soon after he was diagnosed and I remember noticing that there were quite a few older people with mobility problems. I pictured myself then with Roch in a wheelchair, joining this elderly disabled community at the garden centre. It upset me. But you know what? It was fine. I enjoyed myself and I don't think it was as hard for Roch as he had feared. I hope not. One thing I've noticed is that as I'm quite small, it's easy for me to drop a little kiss on the top of his head, or bend just a tad to whisper something in his ear. I think he likes that.


Today we ventured to Waitrose with the chair and I've noticed something interesting. People seem to be much more understanding when they see him in the chair than when he uses the rollator. It's like they view the rollator with some suspicion. They don't 'get' why someone like Roch has to use it - but they can somehow comprehend the wheelchair.


It does mean we can get out and about more together, for longer stretches of time.





I realised today that I have to be more organised - we have to be more organised. Roch started to cook lunch for himself and Tom, but although he can make a start with grilling food, he can't really turn it anymore or keep lifting the grill pan in and out of the oven, so I took over. I had planned a different lunch for myself and as I organised their lunch I realised just how hungry I was. In the old days, Roch would have just cooked his lunch and I would have prepared mine. No problem. Now I was grumpy because I was hungry. I caught myself feeling irritated and then I realised that it could have been avoided with simple planning. This is the way it is now. He can't do things for himself like before. Like the aeroplane safety drill - 'place the oxygen mask over your face before assisting other passengers' - well, organise things better, feed yourself before cooking for Roch! It's not exactly that I forget my role as carer, I just haven't got used to planning ahead.

Strong Emotion

He is angry and that doesn't surprise me. So why was I so taken aback by his rant last night? He has dealt with all of this in such a reasonable, practical way. He is so brave and he is so determined. I have even, on occasion, suggested to him that he admit his anger to himself. So why did I sit in shocked silence when I came upon him in the bedroom, sitting with his laptop, and the rant commenced? It is my business to deal with people's emotions and I pride myself on how I can help and support those who come to me for help. I suppose it's different at work, you're prepared to deal with strong emotion. It's different when it's your spouse. It wasn't directed at me, he wasn't angry with me but I've always found anger very hard to manage. It scares me, it makes me defensive and I wasn't prepared to encounter it in the bedroom.
What led to the outburst? The bloody dragon technology. Now it's making me angry. It took him forty minutes to create a facebook message which should have taken 3 minutes to write. It would not cooperate. He was frustrated and angry with it but it was so much more than that. He is angry with - what? Fate, life, The monkey? It also made me realise how frightened he is. He is afraid he will have to rely on this stupid, faulty, patchy software when he can no longer type himself, when he won't even be able to rant anymore. Yesterday he looked into the future and it angered and frightened him.
I'm sorry Roch, it took me a while to be present for you. I objected to your use of a word we both know I hate, even though it was not directed at me personally. What a basic mistake! That directed your anger at me for a few moments. I managed to to listen and tried to acknowledge how you were feeling and what was going on for you but I could have done better.
Today I think about how frightening the future must be for you - I've thought of that before, but last night was a timely reminder. You are strong and you are determined but you're not superhuman.
One thing is certain, we must make sure that the equipment and software you are using works efficiently and how right you were when you raged at the people who are responsible for fixing it, and haven't. No, they don't know what it means to you, how desperate you must feel, for them it's 'an IT problem' but for you, it's life or death of a sort. So we must focus on how to make sure they (or others if they can't) can get it right.
And RAGE if you have to - I'm there for you - and there may be other places you can bring your anger, and other people who can listen and help.

A visit to King's College and I learn something new.

Roch tells me that he feels he is standing - correction - tottering - on the edge of decrepitude. It's true he is so much slower now. I often ask him how he is, how he is feeling and he doesn't give details, just says he's ok. So there are times when I look at him and I really don't know how he is - I know how he seems to be on the outside, but how he really is, I couldn't tell you. At times like that I feel a little disconnected from him. Maybe that's ok with him. He doesn't have to tell me. If people ask him how I am, he says "I don't know. You'll have to ask her." It's because I don't really delve deep enough to know how I really am. Sad, yes. Frightened of the future. Yes. Further than that - I'll have to work it out with my counsellor... Occasionally I ask him if there are any changes, and then he'll usually tell me. Hospital appointments are instructive and I learn a lot. Today we went to King's College Hospital for two appointments. The first was so that they could carry out an EMG test. Professor Al-Chalabi had asked Roch at his last appointment if he minded this test being carried out again. It's not pleasant. It is one of the tests they do when they think a person may have MND and it's unusual for someone to have the test twice. I think Professor Al-Chalabi is interested in the way Roch's illness is presenting. If Roch had refused to have the test again, he wouldn't have pressed the issue. I think Professor Al-Chalabi is tying up some loose ends. So what's an EMG? Well, it's Electromyography, to give it it's full name, which is the study of the electrical activity in your muscles when they move. The activity is recorded from a fine needle which is placed in the muscle. As we know, muscles work because messages are sent to them from the brain via the nerves. Nerve conduction studies are tests to measure your nerve reactions and to measure how fast your nerves conduct these messages. The first time Roch had an EMG was at Charing Cross Hospital about this time two years ago. Unfortunately the experience was made doubly unpleasant because the person carrying out the test didn't have much of a bedside manner. Happily, today was different. Professor Mills carried out the test. To those of you who work with me I say, he reminded me of Neal. I don't need to explain further to you! Professor Mills has a gentle, self-effacing manner and we both immediately felt at ease in his company. He carries his professional knowledge and expertise lightly but as with Professor Al-Chalabi, he is clearly expert and so his patient feels safe with him. We met with nothing but kindness from the nursing staff and from him. I found the procedure very interesting to observe and took notes for the blog. I think I worried Professor Mills a bit! He started by putting a red velcro strap around Roch's right ankle and I thought how thin Roch's ankles are now. He tested a nerve in the right foot to start with and continued up the body on both sides, measuring the speed of conduction in the nerves. He applied small electrical pads to the skin on various different parts of Roch's body in turn, foot, leg, arm etc., and the nurse placed a strange contraption on Roch's head, at a sign from Professor Mills. He gave Roch instructions; "Push your knee down into the bed. Relax your arms, drop your head back. Push the knee down gently." Meanwhile the nurse would hold the alien-looking helmet device on Roch's head. He was measuring the time it took for messages to get from brain to muscle. Right knee - 26.7 milliseconds; left knee 27.3 milliseconds. Within a millisecond on the two sides. Then he turned his attention to Roch's arms and a different contraption (slightly less weird) was held on top of his head. (At this point Roch declared "I'm ready to talk now!") Then a fine needle was placed expertly by Professor Mills into a succession of muscles in turn (he never faltered in finding the correct muscle point at which to place the needle), occasionally (ouch!) sending the needle futher in. The needle was placed in Roch's shoulder, near his neck ("Now shrug, relax your shoulders") and also on his throat ("Put your tongue against the back of your lower teeth, close your mouth, now open your mouth, put your tongue out"). I could see the Professor's screen where the results of the tests were appearing - but it meant nothing to me of course. Just a series of zig-zagging lines. Throughout the procedure he was careful to check in with Roch. Afterwards Roch said it had been 'a piece of cake' compared to the first time. He really had not been looking forward to it. The results of the test will go to Professor Al-Chalabi and no doubt he will talk us through them in July. It will probably make very little difference to us, but it may provide him with further information about how the disease is presenting in Roch. Many thanks to Professor Mills and the nurse who assisted him, for making it much less of an ordeal than expected (and no-one was scary at all!) We brought the wheelchair today. That's the first time to King's College. Last time was the first time we drove. Roch is so right. He is in the Country of Last Times. No more public transport, no more walking from the car park to the hospital building. So we made our way to see Andrew, who is the nurse Roch sees for the LiCals trial. It is month 15 and only 3 more months to go on the trial for lithium. This is where I learn a lot. Andrew takes his blood pressure, takes a blood test, sometimes carries out an ECG (but not today) and then we come to the questionnaires. Always the same questions, but over the months, the answers have become different. Walking, turning in bed, swallowing, cutting up food, going upstairs, dressing/washing. Can he do these things a. with no problem at all b. with some assistance, but mostly by himself c. not at all - I paraphrase, but you get the idea. So this is where I hear how he is really doing. The other day I watched him cutting up his food. He doesn't like me to help him, unless it's really necessary. Somewhere inside I felt an ache, a kind of pain. It hurt me to watch him as he held the knife and fork with concentrated effort. It is such a struggle for him to do so many things by himself (c. not at all or mostly b. with assistance). I really don't know where I will find the strength to watch the rest of his decline. I only know I must find it somewhere. Actually, the physical stuff I know, mostly, but the second set of questions are about how he is doing in himself. This I find interesting. He cannot say 'Ok' to Andrew. Is he cheerful a. all the time b. most of the time c. none of the time? Today I discovered that he feels like something bad is going to happen a lot of the time, that he is anxious a lot of the time, that he feels low more often than is obvious. None of this surprises me. I know that he feels he is tottering on the edge of decrepitude. But he can still find the humour in things 'most of the time' and is cheerful 'most of the time'! It was a cheerful drive to the hospital. We enjoyed the sunny day and thanks to our several detours and Mrs. Satnav's recalculations, we drove by Buckingham Palace and along Horse Guards Parade, past the Houses of Parliament and over Westminster Bridge. It was fun. When I was in Dublin, he posted a link from youtube on Facebook. It was a song for me. 'Just another day without you.' Jon Secada. It's not like him to be sentimental and I was touched. Last night, in bed he turned to me and said "We have plenty of time left together, don't we?" "Of course we do," I replied. "Of course we do." We do. Don't we?

The kindness of strangers - and two tidy Bridies...

I have spent the last few days in Dublin, visiting my mother. Two of Roch's brothers came to stay with them here while I was away. Often when I've been away my return is met with - let's say - a bit of housework to be faced. This time was different and some words of Mary Maher came to mind - the 'tidy Bridies' had been at work. Thanks guys and thanks to Eoin for all the jobs done around the house and garden. You can come anytime mate - I'll have a list waiting...! All went well in my absence and I think Roch really enjoyed himself. They noticed that he's slower and that he gets tired more easily, but I think they were pleased that he seems in good form. He does seem in good form. I don't know how he manages it. I think he may be keeping the monkey at bay with sheer will power and bloody mindedness! It's funny but when I'm away I find I can't fully relax. I'm really not at ease unless I'm here. Maybe it's just me being a control freak but I'd like to think I just miss them a lot. We went to the AGM of the local MND Association branch a couple of weeks ago. I always have to brace myself to face these meetings, but usually when I get there I'm ok. So far I've found them a bit of an ordeal, some less than others. This one was the usual AGM kind of stuff, followed by an interesting presentation on the medical research side of things. I find the meetings more helpful and easier to negotiate when there's a focus of some sort. Some familiar faces were present and some new ones. After the presentation I introduced myself to one couple I hadn't seen before. I know what it feels like when no face is familiar. He looked like he was at a very similar stage to Roch and he talked to me about his diagnosis and his experiences so far. His wife's first language was not English and I was conscious of the fact that she wasn't taking part in the conversation, although she was listening. So I turned to her and asked her how she was feeling. "Sad," she said, without hesitation. "Me too." I replied. We looked at each other. We didn't need to say anything else. Later, as we were leaving and our husbands were exchanging comments on their respective rollators, (each clearly hating the things, but having to make the best of it) she and I hugged each other. "Good luck." I said. "You too," she replied. I left feeling supported and understood, having exchanged seven words with a stranger. It was my best meeting yet.