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/