I usually hate January, but this year it seems to be moving along quite quickly and I find that in my walks around our neighbourhood, to and from the High Street, along the pleasant suburban roads and under a pale wintry sky, I am listening to birdsong, watching for new buds on trees and shrubs and noticing the crocuses, daffodils and budding tulips. Maybe it’s because the weather has been pretty mild but January doesn’t seem too bad this time round.
I am very preoccupied with work this month and that might explain why time is going so quickly for me. I am so busy. For this month I am working Mondays, Wednesdays and Fridays, whilst my jobshare partner is away. I find myself constantly thinking about what needs to be done to keep things going smoothly. There are not enough hours in the day and there is certainly not enough time in 3 days for everything. This means that work is the focus of my attention at present. I noticed this the other day and mentioned it to Roch - does he feel it? I asked. Is it affecting the way I am at home? He said he was glad of it, he’s glad my focus is elsewhere. It doesn’t mean that his care is neglected in any way, just that he is not at the forefront of my thoughts. When I wake I think of what I haven’t done in work and what the work priorities are. Although having said that, the other morning, woken by Oscar (our cat) at 6am (thanks, Oscar), I was assailed by thoughts of the injustice of our situation. I seldom waste time dwelling on it, but really - how unfair is this? There was an emptiness in the core of me, an aching loneliness for the future we have lost and I felt angry for Roch and for me, for Kate and Tom. But what can I do? Useless to rail against it. Get on with it. It was a working day, so work took over and I was glad of it.
On Tuesday I went to see my counsellor and we talked about my anxiety about work and how my mind never rests. There is never enough time to do everything. Tasks - home tasks too, crowd my mind. So!
Meditation, exercise and space. This must be my mantra. Still the inner voice. Walk, cycle, move. Make space for myself. Make time for myself. Allow myself time to do nothing. (I am so bad at that). We are back to Loving Kindness now. As she closed the door softly behind me, those were the words that followed me into the afternoon. Loving Kindness.
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Last Saturday was the first time Roch ventured out in the electric wheelchair. It wasn’t an unqualified success. Firstly, he has difficulty getting out of the chair. It must be lower than the manual chair, because he can raise himself from that, no problem. Even with the higher cushion, it’s difficult. Next month, he should be getting his own chair - this model is for interim use only. Perhaps that will be better.
How your perspective changes when you view the local pavements from the perspective of a wheelchair user. It’s more like an obstacle course. We had agreed that for a first outing in the chair, it would be best to keep it short and local. So off he went, me strolling beside him, over the uneven paving stones, keeping the speed low. There are trees planted at intervals along the pavements, which is lovely of course, but the older, more established specimens have roots which have succeeded in lifting the pavement in lumps and bumps making it impossible to bring a wheelchair over the path in those places. So Roch had to bring the chair onto the road (a quiet road, with no ’through traffic’) to pass. Then there was the problem of crossing the streets. Cars parked alongside the slope in the pavement and parts of the so-called sloping pavements too high for wheels to negotiate safely meant that again, Roch had to wheel himself onto the road for a time. I don’t think that experience will encourage him to go out on his own, or at all. It’s hard for him to feel so vulnerable and so frustrating to be moving along so slowly when he was such a dasher, a rusher, a ‘let’s get going’ kinda guy. It took a lot for him to make that journey. That’s a walk that takes maybe ten minutes or less for an able-bodied person. It took us forty minutes with Roch in the electric wheelchair. I guess he’ll get used to it with practice and with the better weather it may be more inviting for him to leave the house.
The Environmental Controls people are coming on 30th January. Following one consultation with Angela (Social Worker from Richmond Council, based at St. Mary’s hospital Roehampton) and a further meeting with Angela and engineer Don, arrangements have been made for Don to set up the environmental controls for Roch. He will be able to open the front door, turn lights on and off, control the TV channels (watch out Tom!) - all using remote control operated from an I-pod strapped to his wrist. I think he’s looking forward to this! He may just drive us all crazy.
Thursday, 19 January 2012
Monday, 26 December 2011
The run-up to Christmas and an interview for the Associated Press
I have to admit that I found the run-up to Christmas difficult this year. I felt maybe that I’d tired myself out with preparations for our party. Once the party was over, I couldn’t believe I still had so much to do for Christmas. I didn’t feel very festive during Christmas week. We had our office Christmas lunch and all the people I work with are lovely but I found myself looking round the table and feeling quite detached from the conversation. It felt like it didn’t have much to do with me. It should have been fun and relaxing, but I was going through the motions. In fact, it felt like I was going through the motions for most of the week before Christmas. One morning Roch and I faced each other across the breakfast table and I told him that I just felt sad. For the first time Christmas was making me sad. Would every Christmas feel like this now, I asked? He felt sad too, he said. How many more Christmases will there be for us? Will I cook a big Christmas dinner for Kate, Tom and myself when he can’t eat it? Will I want to? We allowed ourselves to admit our sadness to each other. Afterwards, I felt a little better and after work on Thursday, I did begin to feel more festive. The house looked wonderful with all the decorations up, the party had been a great success and now all I had to worry about between me and enjoying Christmas Eve and the day itself was a visit from a film crew from the Associated Press.
(APTN Horizons http://www.aptn.com/ )
It is Stephen Hawking's 70th birthday on 8th January and the (APTN) are making a programme to mark the event. They wanted to film a couple living with motor neurone disease and the MND Association suggested us. I was dubious at first but we decided to go ahead with it. In fact it was a really interesting experience. The people who came to film us were very considerate and very professional. The whole thing took about two and a half hours and they shot 50 minutes, which will be edited to six. Our friendly young cameraman has promised us a DVD of the finished cut and also the full 50 minutes’ footage. They interviewed each of us, took pictures of photographs of us together and with the children and filmed Roch at work at his computer, putting on his shoes with the famous ‘sock putter-onner’ and enjoying a cigar and coffee outside on the ‘smoking platform‘! Daily life. It’s a programme which will be translated into several languages. It’s funny to think of us being dubbed into Chinese and Farsi.
Our interviewer asked us questions about how we felt after diagnosis and how we cope now and we talked about how helpless we felt then and how, until we talked to the MND Association, we simply did not know how to tell the children. The reporter asked me how we met and what attracted me to Roch all those years ago…I found myself talking about the early years together and his boundless energy, how he could never keep still for five minutes - how idealistic he was, how attractive - how sexy. The day he winked at me across a crowded room and we both felt that spark between us. They are good memories.
We talked about how MND has changed the way we look at life. I think this is especially true of me. I am much more laid back about things when they go wrong. Less likely to freak out when life doesn’t go to plan. We talked about how we enjoy the little things, watching the birds in the garden, noticing the birds in the garden, taking pleasure in the beauty of the light, the shape of our birch tree against the sky.
Afterwards, I felt that Tom (the cameraman) and Havovi (the reporter) had done me a favour. They reminded me not just to enjoy the present (something I had been unable to do earlier in the week) but to remember to treasure the past.
(APTN Horizons http://www.aptn.com/ )
It is Stephen Hawking's 70th birthday on 8th January and the (APTN) are making a programme to mark the event. They wanted to film a couple living with motor neurone disease and the MND Association suggested us. I was dubious at first but we decided to go ahead with it. In fact it was a really interesting experience. The people who came to film us were very considerate and very professional. The whole thing took about two and a half hours and they shot 50 minutes, which will be edited to six. Our friendly young cameraman has promised us a DVD of the finished cut and also the full 50 minutes’ footage. They interviewed each of us, took pictures of photographs of us together and with the children and filmed Roch at work at his computer, putting on his shoes with the famous ‘sock putter-onner’ and enjoying a cigar and coffee outside on the ‘smoking platform‘! Daily life. It’s a programme which will be translated into several languages. It’s funny to think of us being dubbed into Chinese and Farsi.
Our interviewer asked us questions about how we felt after diagnosis and how we cope now and we talked about how helpless we felt then and how, until we talked to the MND Association, we simply did not know how to tell the children. The reporter asked me how we met and what attracted me to Roch all those years ago…I found myself talking about the early years together and his boundless energy, how he could never keep still for five minutes - how idealistic he was, how attractive - how sexy. The day he winked at me across a crowded room and we both felt that spark between us. They are good memories.
We talked about how MND has changed the way we look at life. I think this is especially true of me. I am much more laid back about things when they go wrong. Less likely to freak out when life doesn’t go to plan. We talked about how we enjoy the little things, watching the birds in the garden, noticing the birds in the garden, taking pleasure in the beauty of the light, the shape of our birch tree against the sky.
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| Holding forth! |
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| Let's try not to look too self-conscious! |
The Party!
I thought you might like to see some photographs from the Christmas party we had at home on 10th December. This has become something of a tradition for us now - family and friends, music, booze and lots of food! Preparations begin weeks in advance, Christmas decorations for the house and table, planning the menu, buying in the drinks - arranging Oscar the cat's overnight accommodation...there is something wonderful about being together at home surrounded by the warmth of the love, affection and goodwill of family and friends. This year had an added element of surprise as, unbeknownst to Roch, plans were afoot for a 50th Birthday surprise!!!
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| Sisters Laura (left) and Marianne give little brother a birthday kiss! |
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| With brothers Mairt, Paudie and Eoin (Eoin playing waiter on the right). I know, like peas in a pod!! |
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| Joined by Paudie's wife Ger and Mairt's wife Sheila (from left). |
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| Most of the 'wimmin' of the Maher clan. |
Many thanks go to my sister Maura, without whom this party would not have been the resounding success it was, to my neighbour Michelle, for making a spectacular 50th birthday cake for Roch, to Roch's brother Eoin for his patience and time assisting with preparations on the day, to my brother Dermot, who flew from Budapest for the occasion and to Roch's brother Mairt, unofficial photographer for the night!
Sunday, 4 December 2011
The 50th Birthday
I couldn't leave the blog today without officially recording our family celebration last Sunday. Roch was 50! Kate came home to be with us and we went out to a gorgeous local pub for a delicious meal. The pub has excellent access and a disabled toilet and the staff are friendly and helpful. We were joined by Kate's boyfriend Simon and there was a lovely Christmassy feel to it all. It got me in the mood for party planning.
Looking rather surprised!
Lovely shot of us just below the toilet sign!
Roch ordered pig's ears as a starter but we all agreed that this was a mistake. I don't know whether the chef had made a pig's ear of it (haha) or whether they were meant to be like that - but none of us like them! The rest of the meal was mouthwatering and I never saw a sticky toffee pudding consumed with such appreciation before (Kate). Definitely to be recommended.
The day had started with pancakes and maple syrup, and ended with Birthday cake - with a huge meal in between. That's my kind of day...
Happy Birthday Roch!
Looking rather surprised!
Lovely shot of us just below the toilet sign!
Happy Birthday Roch!
Incurable Optimism Exhibition
At last I get a chance to report on this! Helen - just to say the exhibition was only open to MPs and Peers - I'm sure if you had wanted to come to the Reception, it would just have been a matter of contacting the MND Association directly - but I know this comes too late!
The Exhibition was amazing. All week MPs and Peers were able to view Patrick's portraits in the Upper Waiting Gallery in the House of Commons. It's a bit of a thoroughfare, on the way to Committee rooms, so a lot of people were in a bit of a rush to get through, and didn't have time to stop, but hopefully enough did find time to stop and take it all in.
Unfortunately, Patrick himself was unable to attend the Reception and was sorely missed.
The Reception on Wednesday went well, I thought - lots of MPs and Peers were present (see link to find out who came along)
http://www.mndcampaigns.org/blog/273_the_incurable_optimism_reception_and_exhibition )
to listen to Gavin Williamson MP (Chair of the All Party Parliamentary Group on MND) give a passionate and articulate speech about the Incurable Optimism Campaign and the work of the MND Association. Let's hope those present listened to his plea for support. Several people spoke, among them Andy Burnham MP, former Secretary of State for Health, who assured us that our voices would be heard and reminded us that his colleague, MP Kevin Hughes, worked and lived with MND before his death in 2006, so the House had witnessed the devastating effects of the disease first hand.
But the most powerful speech came from Alistair Banks, who has taken on the mantle of fronting the Incurable Optimism Campaign. Alistair is a musician and, inspired by Patrick's story, pledged himself to record an album before losing the use of his hands. He has done it! The album will be released in time for Christmas. Find out more about Alistair here http://alistairtheoptimist.org/
Alistair talked about the 'postcode lottery' and gave a stark example, explaining how in Somerset, where he lives, a motorised wheelchair was provided for him - but a few miles away, across the border in Wiltshire a person living with MND was told he would have to buy it himself. Prohibitive for most people. Fortunately, in the instance he spoke of, the MND Association provided a motorised wheelchair - yet again, a Charity providing a service which should come from Government.
There were lots of familiar faces there - the wonderful Julia Franklin, Association Visitor and Optimist extraordinaire (her portrait was one of those painted by Patrick). Here we are with Roy, who treated me to a personal serenade, very sweetly sung "Have I told you lately that I love you..."
It's always a privilege to be at the House of Commons and I count myself lucky to have visited several times now. You can see Patrick's portraits here:
http://patricktheoptimist.org/?page_id=49
Tuesday, 29 November 2011
Being optimistic
I have not been at all well over the past few weeks and so I haven’t been blogging lately. It’s been the last thing on my mind, because when you’re a carer, and you’re ill, there’s nobody to look after you and you are constantly worrying about the person you care for. Luckily, Roch can still do a lot for himself, although everyday tasks tire him and the list of tasks he simply cannot do grows all the time. There were two days when I was too ill to stir from bed and he and Tom just had to get on with it - and they did. The rest of the time, I felt awful and divided my time between bed and prioritising tasks. There were days when I had to rest after carrying out simple chores and lots of things just didn’t get done. Maybe it gave me a small insight into how difficult and frustrating it is for Roch. The first day I went back to work I had to sit down for a while after dressing. He has to rest after he puts on one sock. I wore flat shoes because I felt a bit wobbly on my feet. He has one pair of shoes that are comfy and safe and don’t look awful, and that accommodate his ‘foot-ups’.
We had to cancel his appointment last week at the Wheelchair Clinic at St. Mary’s in Roehampton. I just couldn’t have brought him. It was so disappointing. They told us that it might be the New Year before they could give us another appointment, but we were lucky, they had a cancellation and we went along on Monday. Roch had his driving test (!) and hopefully before Christmas, the first motorised wheelchair will arrive. His own chair won’t be available to us until January or February but he’ll have something to be going on with. I’ll have to make some room in the hall for it. It’s quite a neat affair. That felt like another milestone. I’m hoping it will restore some independence because at the moment, he can’t go anywhere without me or someone else to accompany him. Maybe he’ll grow confident enough to go out for the paper by himself now. He’ll need practice and trial runs with someone with him.
Today we went back to The West Middlesex Hospital for Roch’s appointment with the Neurologist there. It didn’t begin well. Their appointments system has changed, although the letter didn’t tell us this, and we made our way to the Outpatients Clinic as usual, where we were told by a very dour nurse that we had to check in for the appointment at the Main Reception back at the front door of the hospital. The nurse said ‘You can leave him over there and go to Reception yourself.‘ It’s what you’d say to someone about a dog. She had taken the letter from him but then ignored him completely and addressed herself exclusively to me.
The waiting room (really just a corridor) was full and I pushed the wheelchair round the corner to where I knew there were extra chairs. All the chairs at the edge of this waiting area were occupied and there was no space for the wheelchair to go past, to where there were some free seats, so round I went again, back to the corridor area and headed for what I thought was some free space. The nurse called to me sharply (She was clearly cross and felt the wheelchair would block a thoroughfare - then don’t arrange the waiting area in a corridor, I would say!). In the end I suggested to Roch that we both go to Reception. We were fuming, but by the time we got back, we were feeling calmer. I asked a lady to move, so I could sit beside Roch, and she kindly did so. We read the paper and sipped water for a while.
I have to say, I thought our appointment with Dr. Zamourri went well. We seemed to get on better this time. It didn’t feel so depressing. At least, not for me. As with Professor Al-Chalabi, Dr. Zamourri is pleased with Roch and confirms that the ALS is of slow progression. Her advice is to be 'positive'. Poor Roch, he feels he is ‘on the edge of decrepitude’ and sees small reason to be thankful. I think he is angry and I think he is sad and I think he covers it all up very successfully, most of the time. My counsellor tells me that in my blog she sees a ‘relentless smile throughout’ - I hope I got that right? Even if I didn't, I know what she means. I do try to maintain a degree of positivism and optimism - not just in the blog, but all the time. And yes, it is very tiring. You can’t give in, can you? But I think I am also angry and I think I am also sad. I just don’t write about it so much. Maybe in future I will. Perhaps I can see more reasons to be thankful than Roch - slow progression means time to get the kids used to the whole idea of it, time to say goodbye, more time together…time…he sees this too, but maybe for Roch, it’s not enough. I can’t say that it would be for me, if I was in his place, facing his future.
But tomorrow I have to be optimistic because I’m off to the House of Commons. This week sees the exhibition of paintings of Incurable Optimists - a series of paintings by the artist, Patrick Joyce, who at 39, was diagnosed with MND and pledged to paint the portraits of 100 incurable optimists. He is now 41 and he has lost the ability to paint, but he completed 18 portraits and these are being exhibited at the House of Commons this week. The exhibition is open to MP’s and Peers and the MND Association hope to raise awareness and support in Parliament. It is the incurable optimism of the MND Association that one day the disease will be beaten, an incurable optimism that drives people to raise and donate money, to help fund research to lead to future treatments. It is incurable optimism that keeps researchers and scientists in the lab. The MND Association say that it is only through optimism that we will beat the disease. And they are right. So tomorrow, it won’t do not to be optimistic, will it?
Have a look at Patrick's blog - he is a true optimist. I hope to meet the man himself tomorrow. http.//patricktheoptimist.org/
We had to cancel his appointment last week at the Wheelchair Clinic at St. Mary’s in Roehampton. I just couldn’t have brought him. It was so disappointing. They told us that it might be the New Year before they could give us another appointment, but we were lucky, they had a cancellation and we went along on Monday. Roch had his driving test (!) and hopefully before Christmas, the first motorised wheelchair will arrive. His own chair won’t be available to us until January or February but he’ll have something to be going on with. I’ll have to make some room in the hall for it. It’s quite a neat affair. That felt like another milestone. I’m hoping it will restore some independence because at the moment, he can’t go anywhere without me or someone else to accompany him. Maybe he’ll grow confident enough to go out for the paper by himself now. He’ll need practice and trial runs with someone with him.
Today we went back to The West Middlesex Hospital for Roch’s appointment with the Neurologist there. It didn’t begin well. Their appointments system has changed, although the letter didn’t tell us this, and we made our way to the Outpatients Clinic as usual, where we were told by a very dour nurse that we had to check in for the appointment at the Main Reception back at the front door of the hospital. The nurse said ‘You can leave him over there and go to Reception yourself.‘ It’s what you’d say to someone about a dog. She had taken the letter from him but then ignored him completely and addressed herself exclusively to me.
The waiting room (really just a corridor) was full and I pushed the wheelchair round the corner to where I knew there were extra chairs. All the chairs at the edge of this waiting area were occupied and there was no space for the wheelchair to go past, to where there were some free seats, so round I went again, back to the corridor area and headed for what I thought was some free space. The nurse called to me sharply (She was clearly cross and felt the wheelchair would block a thoroughfare - then don’t arrange the waiting area in a corridor, I would say!). In the end I suggested to Roch that we both go to Reception. We were fuming, but by the time we got back, we were feeling calmer. I asked a lady to move, so I could sit beside Roch, and she kindly did so. We read the paper and sipped water for a while.
I have to say, I thought our appointment with Dr. Zamourri went well. We seemed to get on better this time. It didn’t feel so depressing. At least, not for me. As with Professor Al-Chalabi, Dr. Zamourri is pleased with Roch and confirms that the ALS is of slow progression. Her advice is to be 'positive'. Poor Roch, he feels he is ‘on the edge of decrepitude’ and sees small reason to be thankful. I think he is angry and I think he is sad and I think he covers it all up very successfully, most of the time. My counsellor tells me that in my blog she sees a ‘relentless smile throughout’ - I hope I got that right? Even if I didn't, I know what she means. I do try to maintain a degree of positivism and optimism - not just in the blog, but all the time. And yes, it is very tiring. You can’t give in, can you? But I think I am also angry and I think I am also sad. I just don’t write about it so much. Maybe in future I will. Perhaps I can see more reasons to be thankful than Roch - slow progression means time to get the kids used to the whole idea of it, time to say goodbye, more time together…time…he sees this too, but maybe for Roch, it’s not enough. I can’t say that it would be for me, if I was in his place, facing his future.
But tomorrow I have to be optimistic because I’m off to the House of Commons. This week sees the exhibition of paintings of Incurable Optimists - a series of paintings by the artist, Patrick Joyce, who at 39, was diagnosed with MND and pledged to paint the portraits of 100 incurable optimists. He is now 41 and he has lost the ability to paint, but he completed 18 portraits and these are being exhibited at the House of Commons this week. The exhibition is open to MP’s and Peers and the MND Association hope to raise awareness and support in Parliament. It is the incurable optimism of the MND Association that one day the disease will be beaten, an incurable optimism that drives people to raise and donate money, to help fund research to lead to future treatments. It is incurable optimism that keeps researchers and scientists in the lab. The MND Association say that it is only through optimism that we will beat the disease. And they are right. So tomorrow, it won’t do not to be optimistic, will it?
Have a look at Patrick's blog - he is a true optimist. I hope to meet the man himself tomorrow. http.//patricktheoptimist.org/
Saturday, 12 November 2011
Mightily Inconvenienced
Thursday was an important day for us. It's been eight months since our last visit to the Neurologist at King's College Hospital. On Thursday we went back again to see Professor Al-Chalabi. It's a long drive to Denmark Hill from here.
Mrs. Satnav almost let us down and didn't work at all for about fifteen minutes. She managed to recommence operations in time to get me round Hyde Park Corner. Last time that's where I went wrong so I was pleased that today I got in lane and remembered what her rather incomprehensible instructions actually meant. Only one wrong turn later ("Recalculating!"), we made it to the hospital where the parking nightmare begins. We reserve a space but the car park is tiny and the spaces are so narrow it's unbelievable. As I rolled Roch away, I tried not to think about manoeuvring the car out of that spot later.
We had forgotten exactly where the Motor Nerve Clinic was and a volunteer at Reception offered to bring us there. Just as well we were intercepted by Andrew, the LiCals nurse (Lithium Trial) who had been looking out for our arrival. Our volunteer was bringing us in the wrong direction! Andrew said he had been expecting us to arrive with a retinue in tow after the Blog appearance in 'Thumbprint'. I told him we had managed to ditch the paparazzi. We're becoming famous!
It's the last time Roch will need to visit Andrew. As you know, his part in the Trial came to an end some months ago, and since then, he has been on lithium for real and continues to have a blood test every month. Andrew took some blood as the last blood test the Community Nurse did was apparently contaminated. The 'Double-blind' Clinical Trial for lithium has now closed and up to November 30th, they will be collating the information - after that, it will be up to the Statistician, who will ‘uncover the Blind’ and discover who was and was not on Lithium. The results should be published by early next year and if they find that there is a benefit, then I guess we will want Roch to stay on lithium. If the findings show that there is no benefit, then that will be the end of it. We must wait and see.
Andrew brought us over to the Motor Nerve Clinic. I followed him, pushing Roch in the wheelchair, along corridors, around corners and finally as Andrew came to a halt outside an open doorway, I glanced in and saw several people in wheelchairs, waiting. I had been about to go on, past the door, when with a shock, I remembered - that's where we belong. We said good-bye to Andrew and I lined Roch up beside the other wheelchair-bound patients. How strange that glancing inside, I didn't connect him with them. It didn't seem to have anything to do with us.
Before we saw Professor Al-Chalabi, a nurse measured Roch’s lung capacity. 100%. A brilliant reading. This was cheering and a good start. It wasn’t long before the Professor himself came to bring us to the consulting room.
He draws his chair in close to Roch, maintaining eye contact, listening carefully to what he has to say and answering all his questions in a kind but professional way. He is always straight with us. He is mindful of Roch's feelings but he knows that Roch wants the truth.
The results of the second EMG test carried out back in April by Professor Mills has proved without doubt that Roch does have MND. Prof Al-Chalabi had wanted to be sure as there were some anomalies. Just as well we had not allowed ourselves to hope. I don’t think either of us had any doubt about the outcome.
Roch asked him about the dosage of baclofen, which is 15mg a day. Baclofen is prescribed for spacicity. Roch feels his arms are being affected and that this is what prevents him from driving. He feels the baclofen is not making much of a difference and wondered if the dosage was correct. Unfortunately Professor Al-Chalabi confirmed what I had suspected - that the problem with his arms and driving is due more to increased muscle weakness than to spacicity and there's nothing we can do about that. No amount of baclofen will help.
We re-visited Roch's fear that the slow progression of his condition will continue in the later stages. He fears a long period of decrepitude. He told Professor Al-Chalabi that he feels he is decrepit now. Professor Al-Chalabi was surprised and said as much. He said that to him, Roch did not look decrepit. He did say that of course it was Roch's perception of himself that was important but he himself would have described Roch's present condition as being 'mightily inconvenienced' rather than decrepit! He is pleased that the disease is progressing at such a slow rate and is cautiously optimistic about extending life expectancy. But for Roch, it's a double-edged sword.
He was, as ever, quite straight with us and made no attempt to sugar the pill. He confirmed that the disease will progress at the same rate throughout. This is confirming Roch’s worst fears. We should expect that having enjoyed the benefits of a slow progression he will also have to endure the hardship of a slow decline. This was hard to hear. Roch told him that already he is a burden! Professor Al-Chalabi said that the reality of the disease is that one becomes a burden and he just has to accept that. I guess this is true - but as I told Roch afterwards, he may feel that he is a burden but really, it's up to me to say whether he is a burden or not. I hope I never make him feel like a burden. If I do, I don't meant to. But neither of us looks forward to a bleak future of prolonged decrepitude for him.
We are mightily inconvenienced.
Mrs. Satnav almost let us down and didn't work at all for about fifteen minutes. She managed to recommence operations in time to get me round Hyde Park Corner. Last time that's where I went wrong so I was pleased that today I got in lane and remembered what her rather incomprehensible instructions actually meant. Only one wrong turn later ("Recalculating!"), we made it to the hospital where the parking nightmare begins. We reserve a space but the car park is tiny and the spaces are so narrow it's unbelievable. As I rolled Roch away, I tried not to think about manoeuvring the car out of that spot later.
We had forgotten exactly where the Motor Nerve Clinic was and a volunteer at Reception offered to bring us there. Just as well we were intercepted by Andrew, the LiCals nurse (Lithium Trial) who had been looking out for our arrival. Our volunteer was bringing us in the wrong direction! Andrew said he had been expecting us to arrive with a retinue in tow after the Blog appearance in 'Thumbprint'. I told him we had managed to ditch the paparazzi. We're becoming famous!
It's the last time Roch will need to visit Andrew. As you know, his part in the Trial came to an end some months ago, and since then, he has been on lithium for real and continues to have a blood test every month. Andrew took some blood as the last blood test the Community Nurse did was apparently contaminated. The 'Double-blind' Clinical Trial for lithium has now closed and up to November 30th, they will be collating the information - after that, it will be up to the Statistician, who will ‘uncover the Blind’ and discover who was and was not on Lithium. The results should be published by early next year and if they find that there is a benefit, then I guess we will want Roch to stay on lithium. If the findings show that there is no benefit, then that will be the end of it. We must wait and see.
Andrew brought us over to the Motor Nerve Clinic. I followed him, pushing Roch in the wheelchair, along corridors, around corners and finally as Andrew came to a halt outside an open doorway, I glanced in and saw several people in wheelchairs, waiting. I had been about to go on, past the door, when with a shock, I remembered - that's where we belong. We said good-bye to Andrew and I lined Roch up beside the other wheelchair-bound patients. How strange that glancing inside, I didn't connect him with them. It didn't seem to have anything to do with us.
Before we saw Professor Al-Chalabi, a nurse measured Roch’s lung capacity. 100%. A brilliant reading. This was cheering and a good start. It wasn’t long before the Professor himself came to bring us to the consulting room.
He draws his chair in close to Roch, maintaining eye contact, listening carefully to what he has to say and answering all his questions in a kind but professional way. He is always straight with us. He is mindful of Roch's feelings but he knows that Roch wants the truth.
The results of the second EMG test carried out back in April by Professor Mills has proved without doubt that Roch does have MND. Prof Al-Chalabi had wanted to be sure as there were some anomalies. Just as well we had not allowed ourselves to hope. I don’t think either of us had any doubt about the outcome.
Roch asked him about the dosage of baclofen, which is 15mg a day. Baclofen is prescribed for spacicity. Roch feels his arms are being affected and that this is what prevents him from driving. He feels the baclofen is not making much of a difference and wondered if the dosage was correct. Unfortunately Professor Al-Chalabi confirmed what I had suspected - that the problem with his arms and driving is due more to increased muscle weakness than to spacicity and there's nothing we can do about that. No amount of baclofen will help.
We re-visited Roch's fear that the slow progression of his condition will continue in the later stages. He fears a long period of decrepitude. He told Professor Al-Chalabi that he feels he is decrepit now. Professor Al-Chalabi was surprised and said as much. He said that to him, Roch did not look decrepit. He did say that of course it was Roch's perception of himself that was important but he himself would have described Roch's present condition as being 'mightily inconvenienced' rather than decrepit! He is pleased that the disease is progressing at such a slow rate and is cautiously optimistic about extending life expectancy. But for Roch, it's a double-edged sword.
He was, as ever, quite straight with us and made no attempt to sugar the pill. He confirmed that the disease will progress at the same rate throughout. This is confirming Roch’s worst fears. We should expect that having enjoyed the benefits of a slow progression he will also have to endure the hardship of a slow decline. This was hard to hear. Roch told him that already he is a burden! Professor Al-Chalabi said that the reality of the disease is that one becomes a burden and he just has to accept that. I guess this is true - but as I told Roch afterwards, he may feel that he is a burden but really, it's up to me to say whether he is a burden or not. I hope I never make him feel like a burden. If I do, I don't meant to. But neither of us looks forward to a bleak future of prolonged decrepitude for him.
We are mightily inconvenienced.
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