Being optimistic

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

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

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

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

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

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

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

Mightily Inconvenienced

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


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

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

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

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

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

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

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


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

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

We are mightily inconvenienced.

Jenny gets things done

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

Doctors and Occupational Therapists Agree

The SteadySpoon is;

'One of The Most Innovative and Revolutionary

Advancements in the Care and Feeding of the

Handicapped, Disabled,

Challenged or aged Individuals, Ever!'

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

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

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

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

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

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




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

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

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

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

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

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

A different stress is as good as a rest?

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

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

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