Diagnosis P2 - What The Waves Were Always Saying

I was off work from early March 2018 through to September following my second breakdown. This happened shortly after a visit to Swansea where my wife’s sister and family live. I remember little of the trip (so I am told); memory failures coming thick and fast: didn’t even recognise their house (egregious example); noise also almost intolerable. What causes what? Sensitivity to noise or the memory loss? Or all a mess of tangled, jostling, climbing mental ivy? We coped. But only because my wife coped: protection from failing or faltering, administratively or emotionally. And I must first of all state that nearly all of the following information is down to my wife’s care, and her patient and loving record of everything that happened to me. She is the stalwart, patient, courageous, loving guardian through these horrible months; the logical and precise amanuensis for this record and my vicarious memory. So, here we go. 

In April 2019 we at last managed to get an assessment with a nurse at the Memory Clinic for 90 minutes of cognitive tests. The recommendation from that was further cognitive tests with a neuropsychologist and an MRI scan. Test, test test. Stress, stress, stress. Walk around in cloud of bewilderment, fear, hope, dread, guilt. How many isms & appts can one person have? - it was like The Charge of the Cognitive Brigade. Followed this up with an an MRI scan in early May (no idea what the acronym stands for, let alone what it does).

We finally saw Dr. K (the consultant psychiatrist) in June 2019 for the first time, to bring all of this testing information together. He was unhappy with the medication (two anti-depressants) I was on and so his first decision (decisiveness seemed to be his standard mode of behaving, and that was fine by us after all the backwards and forwards of previous months) was to slowly withdraw one old anti-depressant and replace it with a more modern one. Kate raised the possibility that something was happening in my brain (or should be happening but wasn’t) and it was this that was causing the acute anxiety- i.e. there might be a pathological condition causing acute anxiety, rather than acute anxiety causing a pathological condition.

Another sizeable shock for me, however, was that my MRI scan revealed a brain that was smaller than would be expected for a man of my age. Yes, I really am a Human of Very Little Brain. Winnie the Pooh, you have a rival. Cue the honey binge-eating. Apart from a change in meds, Dr K also referred me for a glucose PET scan (which prompted visions in me of a puppy with treacle all over its feet - that will be the flighty and whimsical brain again). In the midst of this storm of consultations and tests we then went on holiday to San Gimignano in Tuscany, Italy - I shall write about this separately at a later date, as it bifurcates the narrative and was a welcome oasis in a neurological desert so I would like it to have its own focus. There was one episode in Italy that needs psychological treatment however ;-) [oh, the excitement and anticipation. I know you can barely contain yourself, dear reader.]

I also had six sessions of CBT early in July 2019 with a student neuropsychologist to help with tackling my anxiety. (I think I was lucky to have these sessions as they formed part of her training needs and experience but also benefitted me!) I can’t honestly remember how useful it was in terms of shaping the grey matter, but it was certainly soothing and anxiety-reducing and I looked forward to the sessions. After our holiday I had the sticky domestic animal scan; and the sun shone on our summer at home. We visited lots of National Trust and other gardens: my wife named 2019 our “summer of gardens” as we visited so many, but they were perfect medication during my recovery: beautiful and tranquil places to while away a few hours. It was during this period that I started to share her love of gardens and gardening and the pursuit of mindfulness outdoors, its benefits for me have been incalculable.

August 2019 - results from the PET Shop. I don’t need to be put down immediately. In a more serious vein, Dr. K was pleased with the reduction in anxiety and noise sensitivity through a combination of the new meds and my own incipient forays into the world of mindfulness and general non-medicinal treatments. The results from the psychological testing were inconclusive as my anxiety levels were understandably high before and during the tests themselves, so he was cautious about drawing any meaningful conclusions from them. More worrying however, Dr.K observed, was that my Glucose PET scan revealed a “reduced uptake of dye in the parietal and temporal lobes”. I haven’t the faintest idea what parietal and temporal lobes are, or what they do, but I gleaned enough to realise that I had a recalcitrant brain that was refusing to do its colouring in, nicely and quietly, in the appropriate sections of its drawing. This lent itself, Dr.K said, to a possible diagnosis of dementia, or Alzheimer’s. I hadn’t realised until now that they are one and the same illness. Further tests were necessary however to be absolutely sure, as some uncertainty remained over whether it would progress from MCI (Mild Cognitive Impairment - the temporary diagnosis) to Alzheimer’s or not. Dr.K wanted me to have an Amyloid PET scan, which measures a protein in the brain called, unsurprisingly, amyloid. It is normally found only in the elderly, and in small quantities, but it is a reliable binary marker for Alzheimer’s: positive or negative; you either got it or you ain’t.

For the sake of broadening my horizons, rather than moping around at home and forgetting things, I went back to work in September, to mope around and forget things there instead. I started working three hours twice a week, and then built up up to five hours three times a week, on Monday, Wednesday and Friday. I decided to be more honest about my depression and anxiety at work and brought it up myself in conversations with other people, as it saved time and embarrassment on both sides. I won’t remember the conversations anyway, or who I’d told, so the emotional risks to me were minimal.

Went back to see Dr.K in late September for the results of the binary amyloid scan test for Alzheimer’s.

It was positive.

To say it was difficult to take in would be a gross understatement. All these months I have been picking up medical words, acronyms and phrases, like shells from the beach: MCI; short term autobiographical memory loss; semantic memory; prodromal; early stage; glucose PET scan, graphs, stages. But Alzheimer’s…? This was one I could not understand, let alone process. It had been the elephant in the room for so long (and unlike me elephants never forget, the smug grey b*****ds), and I was oblivious to it, until today. I barely remember the rest of the appointment, I was so distracted. My mind raced and dived and gyrated, as if it represented one last neurological party. I don’t know who Alzheimer was, but he can have his b****y disease back. I don’t want it. I’d settle for MCI thank you very much, for a happier, and longer, if slightly confused, future. Sadly, I don’t have the luxury of choice. Dr K. wanted to refer me to a specialist tertiary centre in Queens Square in London for a second opinion: the UCL Hospital for Neurology and Neurosurgery. They offered the possibility of further tests; and also access to medical research trials dependent on the outcome. He would see us again approximately six months later.

I continued working and my youngest son started at uni in Exeter at the end of September. I still did not, or could not, accept or face the possibility of an Alzheimer’s diagnosis…my wife, I later found out, was further along this road of discovery. Without my knowing, in October my wife introduced the boys to the possibility of a diagnosis of dementia, so it would not come as a shock later..

We had a long wait for the appointment, but it finally came through for a date early in February 2020. We drove down and stayed overnight in a Premier Inn on the outskirts of London. My anxiety accelerated on the day of the appointments: I was suffering panic attacks, including on the Underground because of the noise and the jostling and the heat and being so far underground, and I was also suffering “brain freezes” for the first time in several months. When we arrived at UCLH, an uncomfortably warm Victorian era hospital, I had two hours of further cognitive testing to add to my collection of reminiscences (if I still can). After a brief 10 minute lunch in a corridor, we had a 1.5 hr follow up session with Dr G, a Portuguese clinical research fellow. He was lovely, especially given the subject matter and the message he had to impart. Apparently he and Dr. Mummery’s team at the Cognitive Disorders Clinic had discussed my case, and were unanimously in agreement that I had early onset Alzheimer’s. The words poured over me like a wave in a storm. Finally, I had no choice but to believe what was happening to me. And the only thing I could say, was a bathetic, frightened, “Wow”. [That’s the word to look out for, as predicted in P1).

Time stopped still. The diagnostic proof did not come as a shock to my wife. She had concluded some months previously that this would be the outcome, but in her typically caring way she had tried to lead me gently along the road towards diagnosis without voicing her own fears. There was a brief discussion about genetic testing, but we demurred, as it would mean repeated journeys to London, which I didn’t think I could cope with. We turned down the offer of a meeting with a nurse as well, preferring instead to make the sad journey home, a journey freighted with new medical terms and putative future outcomes. It was a beautiful day, weather-wise, which made it more of a gentle trip homewards. We were sad, yes, but the glorious sunshine reinforced the context of a beautiful world and my continuing desire to remain in it, for as long as possible.

We saw a (sensitively unsurprised) Dr. K. the following month and he prescribed an additional medication, Rivastigmine (administered as patches to avoid the gastro-intestinal side-effects of other Alzheimer’s medication) which may help the illness to plateau. But it is not a cure. The overall conclusion from the neuropsychological tests conducted in London showed “significant cognitive impairment” in the “medial regions”. At some point in the (hopefully) distant future the cells in my brain will corrode and die, which will ultimately in turn cause my death. I have no idea what medial regions are; but I don’t really care.

I went back to work for a couple of days, feeling numb. Then the diagnosis really hit me, and I was signed off work again for two weeks this time. Telling friends and family was not a pleasant task but we managed. Or rather my wife did. I absented myself from much of it, except with some very close friends, gratefully leaving her to assume the role of Communications Manager - a role she would rather not have to perform; but she performed it admirably. It must have been hard for her. She told the boys first, a few days after the diagnosis. Our eldest was, typically, deeply upset by the news. His way of dealing with it (other than a big hug) was to suggest a game of Cluedo straight afterwards! Bless him. Our youngest was at uni in Exeter: he was measured and reserved in his shock and concern, not just because of the distance and the medium (FaceTime), but also because of his normal stability and calmness. She also told my brother and my parents.

So here we are. The waves crash across our lives once more. Our lives as a family together have too often been untimely cursed by illness and deaths, and the positive message of ‘it’s always ourselves we find in the sea’’ in P1 has its corollary the sense of being engulfed by it - hence “in” not “by” as I mentioned there.

Dickens’ Dombey & Son interestingly has a chapter entitled “What the Waves Were Always Saying”. Paul Dombey is the son of a successful businessman (also called Paul), on whom rests the business’ future endurance and success, as far as his father is concerned anyway. Paul is, however, weak and sickly from birth and dies as a young boy in the chapter named above. The trope of the sea as consoling and calming, but also destructive and harmful, is widely used in literature and poetry, particularly in the nineteenth century. It is certainly the unifying symbol in Dombey & Son: an image of both time and death; destructive and transcendental at the same time. This is also true of German literature in general, and Thomas Mann’s work in particular (on which I wrote my special paper for my degree). I am also taken back however to an even earlier time, when I was studying German ‘A’ Level. As one of our set literature texts we studied a short Novelle by Mann, eponymously entitled “Tonio Kröger”. It was the first book I ever read in German, and it was seminal in the development of a lifelong passion for literature, as well as an awareness of the tension in our lives between the mundane and the meaningful, the functional and the emotional, the everyday world (especially of business) and the inner, artistic, subliminal world; all with the sea as a backdrop. Like Dombey Junior, Tonio is captivated by the sea and it becomes almost a character in its own right. I close my narrative with the last sentence from this slim but beautiful Novelle, as Tonio writes a letter to his friend and confidante Lisaweta:

“Während ich schreibe, rauscht das Meer zu mir herauf, und ich schließe die Augen. Ich schaue in eine ungeborene und schemenhafte Welt hinein, die geordnet und gebildet sein will […] Ich werde bessere machen, Lisaweta; dies ist ein Versprechen.”

(“Whilst I write, the sea whispers up to me, and I close my eyes. I look into an unborn, shadowy world, that needs to be ordered and formed. […] I will do better, Lisaweta, this is a promise.")

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