I was diagnosed in 2000 with primary progressive MS. I first realised something was badly wrong when I was out for a long walk with my partner Catherine and our two friends.
We used to go for long walks on Christmas Common in Buckinghamshire. I was used to walking on the hills in Scotland, but one day in Buckinghamshire my right foot dragged so much I wasn’t sure if I could get back to the car.
All the ingredients for embarrassment. I did get back, slowly, without raising any alarms. That was when I first realised that something was wrong.
Getting a diagnosis wasn't straight forward
As my doctor referred me to the orthopedic department at my local hospital, not neurology, it took a while to get to the right place.
When I eventually saw my brain scan, it showed a lot of little white spots and my first neurologist thought I’d had a series of minor strokes. When he found out it was MS, he told me I might manage for five years without a stick and ten without a wheelchair. That was hard to hear.
Eighteen years later I’m still not in a wheelchair and don’t often have to use a stick. But it’s affected me. I have to think before I go anywhere or even cross a road. I can’t be in a situation where I have to move fast to get out of the way of anything because it’s now impossible for me to run.
Volunteering for MS research
After I was diagnosed, I volunteered at the hospital for mental and physical agility tests and experimental magnetic resonance imaging (MRI) scans. But I had to stop when I got too old at 66. I’ve always wondered why 66?
That was quite interesting. The tests they’d do with mental agility were terribly hard. It was a type of number sequence, where a recorded voice read out a string of numbers. You had to keep calculating, and speaking, the sums of the last two numbers. And it went on for three minutes. I was sitting there thinking I’ve got a PHD but I can’t do your test. I was quite relieved when I didn’t have to do that any more!
Appointments and cat tranquilisers
One thing that’s tricky about appointments with your consultant is when they ask you how you’re feeling. Do you think you’re slowing down? And you say yes, but how far is that due to my age and how far to my MS? I don’t know. The other thing I often do, because I’m waiting in a room with lots of people who seem so much worse off than me, is say ‘I’m wasting your time’. I know I shouldn’t but there are so many people manifestly worse off than me.
No one’s suggested that I take any drugs except a mild tranquiliser. I do take one every night to help me sleep. Before I took it, I’d wake up a lot thinking ‘What’s going on in my body and my brain?’ Then I wouldn’t go back to sleep. The tranquiliser helps, though I’ve found out they’re quite mild and I have a friend who (instructed by the vet) gives them to her cats.
Exercise helps a lot
I do a lot of physio exercises and I think it’s been very helpful. I do them fairly religiously. When I say to the physio that I think I’m wasting her time, she says “Don’t think that, you’re putting a lot of effort into these exercises. Don’t do yourself down.” Which is nice to hear because they take an hour every night!
I also use a Functional Electro Stimulation (FES) device. It’s fiddly and it makes me irritable when it doesn’t work. But I wear it when I’m out and it speeds me up a bit.
One of my physiotherapists came from the next village from me in Scotland and I felt I could talk to her more easily because I didn’t have to moderate my accent. I tend to lapse into broader Scots when I’m in an emotional situation.
Art curating and MS
I’ve retired, but I’m pretty busy still. I’m working on the proofs for a book on a 15th century Spanish painter and an article on a 16th century painter from Brussels.
I’ve been very spoiled as an art historian. Working with the National Gallery, Royal Collection and the Prado, I’m used to being treated in a very privileged way. People take paintings off the walls so I can look at them, and put them under microscopes. So I feel a bit deprived when I go to an exhibition and just have to look at them without getting too close.
The vermilion dog and the science of painting
I love the science of painting, it’s come on so much. New techniques, constantly being developed and refined, are being used to create maps of the chemical elements in the paint. And they reveal things that you might miss by eye. In Jan van Eyck’s Arnolfini portrait, for example, we used to call the little dog ‘the vermilion dog’.
Vermilion is a pigment made from mercuric sulphide but a recent scan showed almost no mercury in the paint but a lot of iron. Now we know the dog has been painted with a red earth pigment, containing iron oxide, and that only two or three brushstrokes in the tail are painted in vermilion.
When I’m working I tell people about my MS so they know I’m not as agile as I could be. Sometimes, when you’re looking at a big painting, you have to climb on ladders and I can’t risk falling onto a painting. People are very kind and hold my hands to keep me steady. I’ve also found balancing exercises really help.
Talking about MS
People usually think I have relapsing MS and I have to explain the difference. What people think is MS can be a bit confusing.
There are things I can’t do that I’d like to still do. I could still drive when we had our house in Scotland which was up a rough track. At first when I was diagnosed I thought maybe I should stop hill walking and rough walking. But it was actually easier to do hill walking than to walk on the flat. My physio said it was because when you’re climbing on rough ground you’re always thinking about where you can put your foot and you have to take things more slowly.
But then the calculation of when to turn back got a little bit silly. I began to wonder each time if it was the last time. Then eventually it was the last time I looked down on the loch. Then we had to say goodbye to the house.
Paintings of Lorne Campbell and Catherine Reynolds by Catriona Campbell
My partner doesn’t realise how much she does for me
Catherine does an awful lot for me. She may not realise, but I wouldn’t do half so well without her help.
When we travel we have to do detailed journey planning, Catherine often does it for me. We avoid stairs and look for convenient hotels near where we’re going. I’m less likely to go abroad on my own now, though I can travel somewhere I know well.
I go regularly to Madrid, to work with colleagues at the Prado, and to Ghent, where I’m on the Commission that supervises the restoration of the Ghent Altarpiece and that’s OK. But the unknown can be daunting.
I am very lucky that I live within walking distance of the National Hospital. I really enjoy reading MS Matters and my contact with the MS Society. It’s good to know that you can ask without apprehension about anything and everything.