I am woken by the central heating pump, which is convenient since I cannot now read a clock face. After three attempts I get my dressing gown on the right way round and with one arm in each hole. Slippers, likewise, though not necessarily on the correct feet. Go downstairs taking care not to look down but to feel instinctively where my feet are and inwardly count the steps as I go down. Take extra care to make sure I really am on the hall floor before progressing to the kitchen.
Breakfast has been prepared the previous evening so “all” I need to do is fill the kettle – much splashing of water as the lid is probably not opened! Put bag in teapot and make tea. Spreading the toast is a problem – butter thick on the right, my “good” side and non-existent on the left side; marmalade similarly positioned – work surface nicely smeared! Pour tea – sometimes half a cup and sometimes overflowing. Climb back upstairs – surprisingly without any spills. Feel for “bumper” on radio to turn it on and wake Sue, who has just had her best sleep of the night when she has room to spread out and can reclaim some covers. We plan our day as we eat breakfast and listen to the radio together. I cannot watch TV now and Radio 4 news is my sole source of information since I cannot read newspapers, magazines or books.
Dressing is the next hurdle (do you know how many ways there are to put on a shirt?). Shaving is also fun: all done by feel with some visual input from my valet/P.A./wife. Hair brushing and general grooming have similar problems.
We prepare to go to the shops; one brown shoe and one black shoe are quite often chosen from the cupboard, when we are interrupted by the postman arriving with the post. I cannot read any of the correspondence but usually ask if there are any brown envelopes from the dreaded tax man who, despite giving me a blind person’s allowance, expects me to fill in a complicated tax form. He then sends me a rebate one day followed by four demands, at weekly intervals, for the return of fifteen pounds which he says he has overpaid me. The next letter contradicts this statement and says that I owe nothing but is quickly followed by another letter with the original demand and a threat to fine me £100 if I do not pay!
Walking to the shops along Berkhamsted High Street is a hazardous occupation: if the café chairs don’t get you the bollards, billboards, buggies or boy skateboarders will! Shopping is another great experience; have you bought dog biscuits thinking they were cereal or asked a startled lady if we need any milk? Filling other people’s baskets can be fun too until we get to the till and Sue wonders where I have put the cheese. As we move along the street people often say “Hello” but I have no idea who they are unless they tell me their name, then I can talk to them. Faces are unrecognisable and body language is impossible to read. Sue tries to wear something bright and noticeable so that I can recognise her in a crowd. That works until someone else is wearing a similar outfit. So far I have not had my face slapped.
Arriving home with the shopping I cannot see to put it away and things end up in strange places. Stir fry made with whiskey marmalade instead of tomato-based sauce was an interesting experience when I attempted to cook a simple meal.
All these problems stem from the loss of binocular vision and cognitive perception as a result of a very rare form of Alzheimer’s disease, called posterior cortical atrophy. Interestingly, since the author Terry Pratchett was diagnosed with the same variant, it has been written about more frequently in the media. Terry asked to meet another author with the same problems to see if he could learn any strategies for dealing with the situation. Thus we found ourselves having lunch in London with Terry and his P.A. and being filmed for possible inclusion in a BBC2 film about Terry’s year, which is hopefully being shown in January or February 2009. An interesting experience, but Sue couldn’t help wondering why Graham wrote academic books on Maths and Quantum Chemistry rather than Fantasy fiction.
I value going to church for services but I find it hard to participate as I cannot scan the words of hymns or prayers. I appreciate people engaging me in conversation; being verbally stimulated is very important in order to keep the brain as active as possible. People are very helpful in offering us lifts as we no longer have a car. I am able to enjoy the chance to participate in house group activities within my limited capabilities. Music has become a very important source of pleasure and I find audio books useful though somewhat limited in scope.
My family are a great source of joy. The three and a half year old twin grand-daughters keep me on my toes and treat me as if I am at their level which in many ways is probably true. Gemma spent a long time at the bookshelves recently and eventually came with a book saying “It’s alright Granpy I’ve chosen a book with just pictures so I can read it to you”. Aimee observed me picking something off the floor and said “Your eyes are getting better today aren’t they Granpy?” If only this were so. There are still many things to be enjoyed. Walking with kind people to help me, talking with friends, listening to birdsong and, most of all, thinking.
Since our lives are now severely socially restricted, we appreciate even more the fact that we are members of the caring congregation at All Saint’s Church. A smile, a kind word, an acknowledgement that we still exist and that inside we still feel the active, busy people we were before the diagnosis, are worth a lot to us.
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