Chris: I had asked doctors, several times since 2017, as I was concerned about my memory, but the response was always “it’s your age.” In 2021 after a series of assessments, I was diagnosed with logopenic variant Primary Progressive Aphasia.
We were relieved to know what the problem was, and the diagnosis came as no surprise to me. Soon it will be 2 years since I was diagnosed and at this point, I feel stable following medication and speech therapy. I do pretty much all the things I have always done since retiring, but the Aphasia means my speech is very much more debilitating. Emails take some time, but I get there 90% of the time and Andrea always checks the other 10%!
Andrea: When Chris was diagnosed it was initially a relief to know what was wrong with him but then a shock to realise that there was no cure. For a few weeks we locked ourselves away, not wanting to talk to anyone and trying to adjust to the news. Luckily it was during the pandemic lockdown so no one really noticed we were hiding away. We dealt with all the practical things that the hospital had advised us to do like setting up our POA and revisiting our wills but in doing that we felt as if the ‘end was neigh’.
Gradually we came to terms with our situation and realised that life was not yet over. In fact our day to day life had not changed hardly at all. Over time we got around to telling our family and close friends and then just got on with life. In some way it has given us a sense of urgency and over the last two years we have ticked a lot of things off our retirement bucket list as well as building many memories.
Chris: The dictionary talks of “the use of imagination or original ideas to create something, inventiveness”, and how “firms are keen to encourage creativity.” I thought Andrea was the creative one in the family but thinking about it now would say I was very good manager with creative ideas. Creativeness can be many things.
Andrea: Creativity is an escape route. I am quite creative, and I do a number of things to keep myself occupied. I have a designated room where I indulge myself and listen to radio 4 while I am either painting, drawing, sewing or crafting. I get totally immersed in what I am doing and feel that’s good for my well-being.
Andrea: We both love painting and have different styles but we both like using watercolours as a medium. Although we paint separately, we give each other critiques and appreciate each other’s opinions of our work. It’s good to come together after a painting day and see what each other has created.
Chris: I always liked drawing and painting as a child. My dad could draw well but he did not do much. For me art classes at my Grammar School were hopeless. I was in the top stream, and art was considered recreational and not academic. It was probably in the 1980’s when I did some proper painting. This was a holiday with Andrea and the boys in Hungary and for a couple of days we all did some watercolour painting from a veranda overlooking a lake.
The boys gave me an artist set for my 60th birthday but I did not touch it until Covid came along and we were all locked in. We did a lot during lockdown but now we tend to paint in the winter and spring. My favourite is painting family and friends houses and I have done half a dozen of those, they are generally liked by the recipients! I take my inspiration from having an end project such as a birthday or anniversary. My current project is a 50th anniversary card for my cousin and her husband. I will paint something relevant such as a local scene or something related to their hobbies.
Chris: Poetry has been something that has helped my speech enormously. It came about when someone suggested that reading the daily newspaper out loud would help with speech. The daily news is rather depressing, so I decided to read a poem out loud every day. I usually read Andrea a poem or two before we get up each morning, which I know sounds terribly romantic but it’s a routine that we have got into. The poems vary a lot from long, short, famous and unheard of, amusing to quite serious and some we have no idea what the poet is trying to convey. However, this triggers a conversation saying what we think it’s about and often looking on Google to find out the real meaning.
The poems will have words that I don’t use in normal everyday conversation, and I find that helpful in broadening my general diction.
I now have a selection of poetry books, usually picked up from charity shops.
The most recent purchase is by Brian Bilston and called Days Like These. There is a poem for every day of the year and each poem is inspired by a significant – often curious, event associated with that day. We both really love this.
Andrea: Chris first learned to cook properly when my work led to me to being away from home a lot during the week. He got fed up with M&S microwave meals and bought Nigel Slaters cookery book, Learning to Cook. The first paragraph said that “if you can read you can cook” and that inspired him to try. At first it was a bit of trial and error but gradually he learned to make superb meals. At one time he made his own baked beans from scratch which took about 6 hours to cook (for one portion!). Chris used to cook a whole meal on his own but now finds this a bit complicated although he often makes breakfast or our lunch and is always in charge of drinks.
Chris also plans our weekly menus. I often give him a starting point basing our meals of what’s in the freezer or store cupboard. Sometimes a spice that we have not used for some time, or a herb we are growing in the garden and off he goes. Mostly he will use google to search for recipes but sometimes delves into our recipe archive to find something we have not had for some time. We have some excellent meals. Once we have the menu he will write the shopping list taking into account what we already have in the store cupboard. We shop together and tend to prepare our evening meal together. He is a superb sous chef and very good at washing up. We chat and listen to music as we work. It a very pleasurable thing to do together, of course the eating together is the best bit.
Chris: I do my best! I really enjoy creating the menus and helping to prepare the meals. I like the involvement and obviously the eating at the end. Andrea often says I choose complicated recipes with many ingredients but that just adds to the challenge.
Chris: As far as I can remember I wanted to be busy so when I found something I liked I would do my best to get stuck in. I’ve been an avid reader since childhood. I read 2 books at a time, but one will be fiction and one nonfiction. I have a kindle now which is great for travel and reading in bed. We both enjoy seeing friends and family and keeping in touch on Whatsapp. We also love travelling and in the last year have visited Belfast, Copenhagen, Bruges and 2 trips to France.
Andrea: We love looking after our grandchildren and often entertain them after school or at half term. As they get older we have introduced them to card games and board games. This is not only good for them but for Chris too in keeping his brain active and having that interaction. Cluedo, Cheat and Knock Out Whist are particular favourites at the moment.
Chris: I am a keen gardener but have no idea what the plants are or what we should be doing with them. I take my cue from Andrea. I’m usually doing some serious tiding up and feeding the birds, that’s generally every day.
We enjoy walking although Andrea walks much quicker than me. But when it comes to hills, I can overtake her. I always liked walking as a boy and for 5 years we lived in the Pennines, with great walks but not as good as the South Downs Way from Eastbourne to Winchester. We have walked half of it, about 50 miles so far.
I’m a Burnley FC fan and I loved playing football at school. I first went to see a football match when I was 8, Burnley 1-1 Leicester and I was hooked. I usually go to about 8 matches a year and used to manage and referee youth teams when the boys were younger, and they were playing.
Andrea: They say never let an illness define you, but it does. That does not mean it should rule your life, but it does mean you have to adapt your lifestyle in certain ways. We never let it spoil things and just work around it. Keeping busy is the key thing, don’t dwell on what you can’t do but focus on what you can do. Try new things and challenge yourself. Life is short, you never know what is around the corner….so enjoy every day in the best way possible.
Chris: I feel that I am being looked after by my wife, family, friends, UCHL, therapists, and GP. I feel I am very lucky in that respect and much luckier than friends who have other illnesses that are a lot more debilitating than mine. You have to count your blessings. I have had a very privileged life in that generally I have been fit and healthy and that goes too for my family.
The treatment I receive is basically speech therapy and medication. I have also taken part in a lot of research run by UCL and feel that this has helped me in a positive way and hopefully will help others too. I would like to meet up with other people who have logopenic PPA but it is a very rare disease.
I am feeling stable and certainly better than I was when I first got the diagnosis.
I have trouble thinking of the right words I need when talking and it is likely I will always have this issue but for now with therapy I feel it is much improved. I speak more slowly, hesitantly and my general memory is not very good. By and large we get on with life and do what we want without any major problems. That is very much down to Andrea who is always there to support me when needed.