One disadvantage of participation in the MND medical trial is the regular verbal assessments, designed to help the researchers monitor progress of the disease. As a consequence, I am regularly reminded of my probable future by questions such as:
- Can you still cut up your own food? Are you having any difficulty swallowing?
- Do you need any assistance with dressing? Or personal hygiene?
- Have you noticed any effect on your speech? Are you able to turn yourself over in bed?
So far I have not experienced any of these, but some feel uncomfortably close. The impending loss of independence and dignity from many of these issues is especially depressing to contemplate.
Signs of deterioration often come when I try to do something I haven’t done for a while. After my recent abortive attempt at salmon fishing, I decided to return to the familiarity of a trout lake near Wiston, where I could sit myself on a bench and not expend too much of my limited energy. The day started unpropitiously as I just couldn’t fasten the waistband on my fishing trousers, something I’d been able to do only a month earlier. To reach the lake means walking about 200 yards across a field, which is daunting, but the styles at either end are the real challenge. Last time I went, I found them difficult, but manageable. This time, I don’t think I could have coped without the assistance of Roger, a fishing friend. I did manage to catch a beautiful 18” rainbow trout, which was returned to fight again, but I think I’d have struggled to land or release it without Roger’s help.
Being tall, and ‘blessed’ with particularly long legs, has its advantages. The down side of long legs is fitting into the limited legroom on buses, trains and planes, and in cinemas and theatres. I’ve developed strategies to deal with these over the years. When Doreen was a ‘friend’ of the Theatre Royal in Brighton, for example, we were able to obtain seats with extra legroom on the front row of the stalls. The added visibility to the cast, though, wasn’t good as, after a pre-theatre dinner with wine, if the performance wasn’t riveting, I tended to nod off, and begin to snore. A quick jab in the ribs from Doreen’s elbow usually worked wonders, but during (to my mind) a particularly tedious production of Ibsen’s ‘Hedda Gabler’, I had so many, increasingly ferocious rib jabs, I thought I might have to go to casualty afterwards!
Another favoured option has been to go for an aisle seat where I can, if necessary, stick my legs out sideways without upsetting the person next to me. Aisle seats have worked for many years, but they have the disadvantage that you are regularly getting up to let other people in or out. My MND has made that progressively more difficult and exhausting, so something had to change.
When we were in Nottingham recently for the test match, we decided to go to the theatre there to see ‘The Scarlet Pimpernel’. The box office staff could not have been more helpful, allocating tickets in an area at the back of the dress circle normally occupied by wheelchair users. A lift up, and level access, plus free-standing seats for carers or people like me with limited mobility, made it ideal. We had a lovely evening, a delicious pre-theatre meal (with just a beer!), and a glass of wine at the interval. Unfortunately, we were so far back that, also being hard-of-hearing, I struggled to make out some of the dialogue. Fortunately, I knew the plot, so it didn’t matter too much, but sometimes it seems that you just can’t win!!