No one person's experience of dementia is quite the same as another's, but the account given below, within the confines of a shortish article, is the closest I have come across to my own "story".
It was in the summer of 2020 – at the height of the Covid-19 pandemic – that I first noticed a problem. I was having difficulty speaking. It wasn’t a casual chat with my wife, Helen, or our two daughters, or my son who lives in the US, but a Skype or Zoom interview about international affairs with a TV channel. I can’t remember which one or what the topic was – probably the Middle East, my main area of expertise, or possibly Brexit. I felt embarrassed because I was less articulate than usual – “lost for words”, as the saying goes.
Apart from myself, I didn’t think anyone would have noticed, particularly as the interview involved an Arabic interpreter. Still, my slow response, and not being able to answer an entirely reasonable question in sufficient detail, were worrying. I hesitated about what to do. Finally, I contacted my GP, who was initially dismissive about my speech concerns. “You sound fine to me,” he told me during our phone consultation. Despite his reluctance, I insisted a few days later on being referred to a specialist at a nearby London hospital.
Covid restrictions and unprecedented pressure on the NHS delayed my first appointment by several weeks. Then, in late September 2020, with Helen, I saw a neuropsychologist, who recommended that I undergo a professional assessment. I had to wait a long time for that next stage.
Starting in February 2021, I went through a series of tests: my ability with words, short-term memory, drawing (copying shapes), speech. The results were mixed. The final assessment was that I was suffering from mild cognitive impairment. MCI is a condition that causes memory and thinking problems, affecting between 5% and 20% of people over 65. It is not a type of dementia, but for many people it is an intermediate stage leading to the development of diseases such as Alzheimer’s. That word, “dementia”, I found extremely upsetting and negative, so Helen and I began to refer to it as “degeneration” or “the D-word”.
I also underwent an MRI (magnetic resonance imaging) scan of my brain. The result of that was that I had “normal” deterioration for my age. (Back then I was 67.) In retrospect that misleading assessment was simply a lack of expertise. Scans are pictures that always need to be interpreted by a specialist. When I later saw a neurologist, privately, at Queen Square in London (the most renowned centre of neurological research in the UK), his conclusion from his own scan was unhesitatingly that I had frontotemporal lobar degeneration (FTLD), though, again, not yet dementia. That was in August 2021.
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Helen was aware of all this, of course; our daughters and my son less so. But close friends didn’t notice my speaking difficulties for several months. Nevertheless, I told them what was going on, as I was getting increasingly anxious to explain myself. The specific medical term for my speech problems is primary progressive aphasia. I talked a lot less than before as I was scared of sounding inarticulate. I was also, obviously, worried about how this strange illness might progress. Uncertainty about the future was the worst thing about it.
Pre-Covid, I belonged to a gym. In May 2019, while doing laps in the pool, I noticed an unusual tightness in my chest. It wasn’t too painful but it was definitely there. I had what my cardiologist later described as a “tiny” heart attack and had to spend two nights in the Royal Free hospital in London.
I was then a bit overweight, so I adopted a fairly rigorous exercise routine to lose some pounds and get fitter. The gym shut in March 2020 because of lockdown restrictions. In mid-May, Helen and I were walking on the Ridgeway in the Chilterns. It was a lovely sunny day but the clouds suddenly began to darken and it started raining torrentially. We walked quickly back to the car but I slipped in the mud and fell flat on my face, injuring my nose badly. Helen screamed. The question (asked largely in retrospect) is: why didn’t I put my arms out to break my fall? Was that an early sign that something was amiss?
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Once I recovered, I continued running and exercising. But in January 2021, I fell over again – while walking on a pavement near our house. I fell on my face, exactly as on the Ridgeway, injuring my nose and chin. I failed again to use my arms or hands. I wasn’t too badly hurt this time.
When I got my FTLD diagnosis the following August, my neurologist (a keen runner) and the brilliant NHS team from the Neurological Rehabilitation Centre (NRC) in Edgware, north London, all encouraged me to keep exercising. I usually ran, albeit slowly, for 40 minutes every other day and when I got home would do 15 minutes on the rowing machine and some stretches. I bought a Fitbit and became fixated on achieving my daily goal of 10,000 steps, running and walking for one and a half hours – about five miles.
But then in late November I fell over while running on the pavement. My nose was fractured, my chin and face were bleeding and I was concussed. Luckily, the daughter of an old schoolfriend was passing with her husband and child. She helped me up, took me to her parents’ house nearby and called an ambulance. It arrived surprisingly quickly and took me to the Royal Free. That, it turned out, was a landmark event. Afterwards, I did – reluctantly – stop running. The main reason was that I didn’t want to add to the stress that Helen was increasingly under. I also wanted to avoid falling.
My speaking has got a lot worse since I first noticed the issue. “Lost for words” is no longer an adequate description. I now speak incredibly slowly. I find it physically difficult – and have to make a deliberate effort – to speak at all, though it is better in the morning than later. It is incredibly frustrating. Family, friends and neighbours have, sadly, got used to it though I have had to stop giving TV and radio interviews (a significant chunk of my freelance income) and also any public speaking, of which I did a good deal. My comprehension and ability to write, using a laptop – so far – do not appear to have been affected. And I am still addicted to deadlines.
But difficulty with speech was not my only problem. Like 90% of humans, I am right-handed. My right hand started to feel weak, especially my fingers, just before the neurologist told me I had FTLD, while my left hand stayed strong. That provided another clue. In late February this year, my NHS consultant Prof Paresh Malhotra, a well-known researcher, told me that I also had features of corticobasal syndrome (CBS), in which parts of the brain begin to atrophy or shrink. CBS is an even rarer condition that can be part of the set of problems making up FTLD. A key element is a growing inability to use one side of the body. The underlying diagnosis can only be confirmed, however, in a postmortem examination of the brain. So, actually, I will never find out exactly what is wrong with me.
FTLD most commonly affects people aged between 45 and 75. I was 68 by this point. Life expectancy is on average six to eight years: so we know (roughly) what the future holds. But not in detail: people with CBS tend to die from pneumonia, blood clots in the lungs or choking fits. I would have preferred to drop dead from a massive heart attack than face this grim, limited future. I would also like to know more about the final stages of this devastating condition. Helen doesn’t want to know. It is also financially necessary to know. How long will we need a carer to help me get washed, dressed and protect me from falling – or if I do continue falling (which seems highly likely), to help me get up from the ground? We are now exploring our options. Will it make sense to move me into a specialised care home at the end of life? It’s so weird to have to think about these questions, but it is our new reality.
I am extremely ignorant about the underlying causes of my condition. Happily, it does not appear to be hereditary or related to lifestyle, but simply bad luck. A few months ago, I found myself needing to shake a plastic bottle of nasal spray before using it to tackle the constant dripping from my nose (another symptom of my illness). I managed without any problem to do it with my left hand. But my right hand was useless. I cannot clap any more, either. In recent months my right leg and foot have become very weak and I have fallen over many times. In late April and early May, this happened four times in 10 days. In mid-June, I fell over backwards in the kitchen. In July, it happened twice in two days. Thankfully, only once did I have to go to A&E.
I don’t want to whinge endlessly, but this is a life-changing illness: I have been driving for half a century, but I noticed before summer 2020 that I had become more cautious, hesitating at junctions or roundabouts. My neurologist recommended that I undergo a voluntary driving assessment, which I failed last November. So I can no longer drive.
I can’t do the gardening or cook any more, which I used to enjoy – and which increases the burden on Helen. Shaving or cleaning my glasses has become very difficult and getting dressed or undressed takes ages. I can still just about shower, but having a bath has become impossible because of the weakness in my right leg. I can’t write by hand – even sign my own name – which I find very strange. I am constantly tired. In recent weeks I have started to feel completely disabled. My right leg, foot, hand and arm feel almost useless.
For a short period until this spring, I looked normal, which was baffling to strangers who had not heard my speaking difficulties. This Valentine’s Day, we were having dinner in a local Iranian restaurant. I noticed several other diners looking puzzled when Helen cut up my kebab. Now, using a walking stick and limping heavily make it clear to anybody that there is something seriously wrong with me. It has made a huge difference, with even drivers being helpful in allowing me to cross roads. After one of my recent falls on Hampstead Heath, I called out to an older woman to assist me. She had a bad back, but shouted to a passing cyclist to come and get me up. He did. And that kind woman then walked me home.
There is currently no cure for FTLD – thus my (private) irritation with friends and acquaintances, who haven’t seen or heard me in person, and write to me: “Hope you get/feel better soon.” Drugs may help to reduce symptoms related to memory and thinking. Other medications can reduce the physical symptoms, such as muscle stiffness and jerky movements. But I have not been prescribed any of these – only an antidepressant that may improve symptoms to some extent. I have become passive and apathetic – whether from the antidepressants or from the disease, I do not know. Bizarrely, I often giggle uncontrollably, which is embarrassing, or worse – if drinking tea or coffee – makes me choke.
I have found physiotherapy helpful. The physio taught me exercises personalised for my needs. Theraputty (therapeutic modelling clay – I love the name) I use to slow down the growing weakness in my right hand, squeezing it frantically. But speech and language therapy has had a less positive effect.
Practical items installed in our house by the NRC occupational therapy team include rails on the stairs, in the toilet and shower, and on either side of the front door. I have a metal frame on my side of the bed that helps me lie down and turn over. And they set up a contraption that raises the sofa in our living room to make it easier for me to stand up. They also ordered me a wheelchair, which is staying, for now at least, covered in plastic, in the garden shed.
Not everything is negative: my friends and family have been amazingly kind and supportive. Literally as well: because I fall over so often I need to hold on to their arms while out walking. Helen’s friends have helped her, too. One neighbour invited me to join a small local book club, where the host of the session chooses a book title and provides supper for the participants. I appreciated the offer but I replied that I didn’t have much to contribute given my speech issues and inability to cook. I may go ahead and try it once or twice. I also belong to a walking group of old friends and neighbours, but I am going to have to stop taking part in that soon.
Helen and I have adopted the principle of enjoying life while we still can. In March, we spent a fortnight in Venice: friends generously let us stay in their apartment two minutes from the Grand Canal. The only problem was getting on and off vaporetti. But I had to use a wheelchair – for the first time – at both airports as I now find it hard to stand still, especially in a queue.
Given my increasing speech difficulties I have begun enjoying listening to music by myself – classical, folk and pop – much more than previously. Headphones and Spotify prove very useful. I also listen to podcasts a lot. Walking and talking are fundamental human activities that I can no longer do easily, so I focus on other things. I have become obsessed with loading and emptying the dishwasher. It’s about all I can do now to help in the house. I can’t multitask; I have to focus on the matter in hand. It is hard to ignore the increasing realisation that as my brain is shrinking, so is my world.
It should be clear to anyone reading this that Ian is reporting from the frontline of his illness with the same clarity and detachment with which he reported for decades from other trouble spots. I find his detachment – and his courage – extraordinary. Sometimes, I wonder how much the antidepressants the neurologist put him on are contributing. I do not share his detachment. I have done the freaking out and panicking for both of us.
When you have been blessed to be happily married for as long as we have, an illness like Ian’s afflicts you both. There was a long initial period of denial – maybe a year – before the crushing realisation came that there was something seriously wrong with him. For months, we all thought he had become withdrawn and gloomy because he was depressed. The Covid lockdowns were enough to make anyone depressed – especially someone used to travelling the world. But you can’t keep kidding yourself for ever and a day (or a night) finally comes when you realise with awful clarity what is wrong.
After an initial period of blind terror – I had (correctly) identified Ian’s illness on Google months before his formal diagnosis – I discovered a tough, no-nonsense side of me. I preferred myself before. Now I am quite capable of discussing Ian’s risk of death from aspiration pneumonia due to his swallowing difficulties without crying or without my voice shaking. I dislike this capacity in myself: sobbing would be a more appropriate response.
This illness is a beast, like a mythical dragon I cannot slay, but I am going to fight, alongside Ian, for as long as I can. I asked a neurologist once whether the partners of all patients with Ian’s type of illness become horrendously bossy. He answered politely: “Helen, I would not say you were horrendously bossy,” before pausing and adding simply: “Yes.”
Most painful is watching Ian live through the slow torment of losing his abilities one by one. His walking is slow and unsteady. It will get worse. It takes him more and more effort to talk. Not being able to write by hand any more or zip up his jacket or knot his laces all seem relatively minor compared with losing the basic abilities to walk and talk.
Equally painful is how an illness such as this changes your relationship. For many years, I had a handsome foreign-correspondent husband who lived in a perpetual hurry, rushing to catch planes and to file his copy to a relentless deadline. He is still handsome and I still love him very much but, in some ways, he has changed beyond recognition. He moves slowly and cautiously, afraid of falling over. He speaks painfully slowly and, when we go anywhere, I have to allow extra time. Of course, I have been angry and frustrated; this slow-motion life is not what I want in my 60s. But, eventually, you learn to accept that this is how it is, the anger recedes and there is just sorrow. Ian has become disabled and I have become – I refuse the word “carer” – the person who looks after him.
I do not want to give the impression, though, that there is nothing but misery. We still have good times. In fact, the knowledge of Ian’s illness, the fact that it is progressive and that there will be an end in the coming years, has made us both determined to make the most of now.
It is hard to explain how this can be so, but the good times now seem better than they were before: the happiness is more intense – and Venice on our last trip was more bWe relish every moment we get to spend with our children. They are young adults now, but watching their father go through this has been horrendous for them. Our younger daughter decided to get married a year or two earlier than she was intending so that Ian would still be able to walk her up the aisle. (He did.) Our elder daughter and her husband have taken on much more of a support role than I would have wanted for them at this stage of their lives. My stepson brought his six-year-old daughter over from the US so that Ian could spend time with his grandchild. (Ian’s speaking difficulties barely register with a small child.) Watching our children’s lives move forwards as they build their futures is our greatest comfort. They have also commented on how much more sweet-natured and mellow their father is in this new slowed-down version of himself. He takes pleasure in things he never had time for before when he was always rushing: music and nature and the infinite minutiae of north London streets.
We have also had the opportunity – not granted to everyone – to plan for what remains of our future and even how I will organise my life after Ian is gone. It is desperately sad but there is considerable consolation in deciding on this together. I hope that writing this may help to raise awareness of these rare neurological conditions and deepen understanding. So little is known about what causes these illnesses. There are no treatments for them. But, faced with this grim reality, we have chosen to carry on dancing – until the music stops.
