The following story is written by Darlene’s husband, Ian.
Darlene Dallimore Cogbill – My story.
My name is Ian Cogbill. I’m 62 years old and from a little village called North Cornelly, which is near Bridgend, South Wales.
On 2 May 2024, my whole world fell apart when I lost my beautiful wife, my best friend, my soul mate and the mother of my 2 fantastic children (Daniel aged 42 and Aimee aged 38) and grandmother (affectionately called ‘Dee’) to our 3 adoring grandgirls (Gracie aged 11, Sophia aged 8 and Ella aged 8), to Sporadic CJD. We had been married for nearly 40 years, together for over 43.
Darlene was 71 years old, as fit as flea (we’d often walk over 5 miles a day with our labrador puppy Monty) and she was the most generous, kind, caring, loving, practical and organised person you could ever imagine. She was still looking after her 103-year-old mother up to the last few weeks before she was taken from us by this dreadful, awful disease. Darlene was loved and respected by everyone, and she loved and respected everyone too. She was THE person to turn to for advice, help or guidance when needed; she was indeed, the glue that held everyone and everything together.
We had so many plans already made for this year; I’d had the ‘all clear’ after major surgery 3 years ago for bowel cancer, we were due to go on a cruise on 2 April, my daughter was getting married to her long term partner (and father of Gracie and Ella) on July 27, the 6 of us were then going on a “familymoon” to Ibiza on 29 July, and Darlene and I were going to visit relatives in Canda for month, in October. Unknown to us, those plans were about to come crashing down…
Our CJD journey from the start to the end was not a pleasant one at all. Frustration, anger, confusion, blame and sorrow, were just some of the emotions we experienced over a relatively short period of time.
It all began in early March 2024, when Darlene said her vision ‘was a bit off’. Vertical lines were not vertical and horizontal lines not horizontal. No flashing lights, blurred vision nor headaches nor anything like that, but she had difficulty in focussing, could not see the buttons on her mobile phone properly, nor the buttons on the TV remote. She couldn’t judge distance very well at all, and everything seemed to be out of proportion.
On 5 March 2024, we went to see our optician, who after a very thorough examination, said he could not see anything physically wrong with her eyes apart from a slight cataract beginning to form. He couldn’t explain why Darlene was experiencing this distorted vision, and suggested we go to our GP.
So, the next day on 6 March 2024, Darelene saw one of the GPs at our local surgery (not our ‘normal’ GP). After what we thought was a brief examination, he diagnosed ‘Visual Aura with Migraine’ and prescribed anti-migraine tablets and blood pressure tablets.
Over the next week or so, Darlene very rapidly got worse. Not only her visual distortion, but she began getting very confused, mood swings, unsteady on her feet (not to the point of falling over), difficulty in co-ordination, and the first hallucinations started…bugs, snakes and worms. She became paranoid, thinking my son and I were trying to poison her, and she believed our water supply was contaminated so would only drink bottled water. She couldn’t sleep, was very restless and began wandering aimlessly around the house, not knowing where she was going nor why. In bed at night, she couldn’t keep still, was raising and lowering her legs and generally ‘fidgety’. I had to barricade the stairs overnight, for fear of her wandering and potentially falling downstairs.
On the morning of 12 March 2024, we were so worried that we went back to the same GP, who was surprised and concerned to see her rapid decline, so he immediately referred her to the Ambulatory Care Unit (ACU) at the Princess of Wales hospital in Bridgend. She had a CT scan there that afternoon as well as bloods taken.
On Friday 15 March, ACU called to say the CT showed a slight lump on her skull, and they wanted to do more tests. An MRI was booked for the following Monday (18 March) and more bloods taken then.
Darlene was rapidly getting worse. Very, very confused now, mood swings got worse, tearful, angry and the hallucinations became more frequent and prolonged. She’d lock herself in the bathroom for hours, convinced she was infested with worms…at this point, she couldn’t run a bath herself, had to have help to dress, and couldn’t make a cup of tea.
On 21 March, back to ACU for more bloods taken, and we were told the lump on her skull was nothing to worry about, ‘probably’ just a group of blood vessels clumped together but this still didn’t answer what was actually wrong with her.
On 23 March, we were so frustrated with the lack of progress, information, or answers as to what was going on with Darlene, we went back to our opticians (at our own request) for an O.C.T. scan (an x-ray of the back of the eye) just to make sure there wasn’t something that had been missed by the GP or the doctors in ACU. We had the result immediately, showing her eyes (cornea, retina, optic nerve etc) to be perfectly healthy. Our optician suggested as her visual distortion was obviously nothing to do with her eyes physically, he thought it might be something more of a neurological issue, and said we should tell the doctors this, but he would write to our surgery as well.
On 25 March, we went back to the GPs surgery and saw a different doctor. She took Darlene off the anti-migraine and blood pressure tablets straight away. We mentioned our optician’s thoughts, and the constant fidgeting and extending and flexing of her legs in bed at night. This doctor diagnosed ‘Restless Leg Syndrome’, and prescribed some tablets. More bloods taken.
On 26 March, we were contacted by ACU to come in for Darlene to have a lumbar puncture that afternoon. The MRI scan of her head had shown nothing of concern, and the nurse informed us it definitely wasn’t a tumour, a bleed on the brain, a previous bleed, nor encephalitis. Despite me asking numerous times what was wrong with Darlene, all I kept being told was ‘we’re not sure, we’ll do more tests’.
On 28 March, back to the GP surgery for more bloods. I kept asking what were they actually testing for, only to be told they need to rule things out first, before they know what they’re dealing with.
On 30 March (Saturday), things took a real turn for the worse. Darlene locked herself in the bathroom, hysterical, very angry, extremely anxious, confused and very frightened. We called 111 and after a lengthy discussion, we were told to take her straight to A&E. we somehow coaxed her out of the bathroom, took her to A&E in Bridgend, only to be told there’d be a 14 HOUR wait to be seen by a doctor…after 5 hours of waiting, nothing was happening, Darlene had some sort of panic attack and stormed out of the waiting room and into the car park and refused to go back in…
On Monday 1 April, we called 111 again after a particularly bad day on Sunday, we feared for Darlene’s own mental wellbeing. This time, we went for ‘option 2’ (mental health). At long last, someone seemed to take interest in our concerns over Darlene’s ever declining health. we were referred to the local mental health team, who arranged for an assessment at our home the coming Thursday (4 April).
During this assessment, the chief psychologist (Dr Sparrow) and 2 of her team agreed there was something seriously wrong with Darlene, but that all physical tests (CT, MRI, Lumbar Puncture, bloods etc) had come back as ‘normal’. She just couldn’t explain what was wrong, but wanted more neurological tests to be carried out before agreeing to it being a mental health issue. I expressed my grave concerns at this, and said I fear Darlene is ‘an accident waiting to happen’. She wouldn’t do anything deliberately to harm herself I’m certain, but she was so unstable, fragile and confused, hallucinations getting worse (seeing huge cracks in the walls, fearing the house would fall down on us, seeing a knight on horseback charging through our living room, believing our dog only had 3 legs, half a head and was an alien) I feared she could seriously hurt herself unintentionally. Dr Sparrow eventually agreed to have Darlene admitted to the specialist neurological/mental health ward at Angelton Clinic, Glanrhyd, Bridgend as soon as possible.
On Friday 5 April, we finally got an appointment to see our ‘normal’ GP. She was absolutely shocked to see the state of Darlene, and as she knows us both quite well on a personal level, she was very, very concerned at the apparent lack of urgency by others as to what was being done. No diagnosis, no information, it definitely wasn’t just ‘Restless Leg Syndrome’, and agreed the situation was very, very serious. She telephoned Dr Sparrow there and then, expressing her concern and asking for Darlene be admitted to hospital with some urgency.
On Tuesday 9 April at 15.30, Darlene was admitted to Angelton Clinic.
Darlene was able to walk, talk and feed herself at this time, but in less than a week of being admitted, and after being given different types of anti-psychotic drugs, sedatives and numerous bloods taken, she could not walk, her speech was garbled and incoherent and she had to have assisted feeding. She was still hallucinating, worse now though, confused, seemed very upset, tearful and very, very frightened. The consultant, doctors and nurses still had no idea what was wrong with her. We visited her every day, sometimes 2 or 3 times a day and could see her deterioration on an almost hourly basis. She began screeching, high pitched wailing, her arms were behind her head in an unnatural position, it was just awful…Such a rapid decline in such a short space of time was unbelievably heartbreaking to see… She didn’t even recognise me one day when I visited, which was very upsetting. Within 10 days, Darlene was confined to her bed, hardly eating, or drinking, and slipping into states of semi consciousness to sometimes almost a complete coma-like state.
The consultant and his superb team of nurses at the clinic were absolutely baffled to know what was wrong with Darlene. The most frustrating part for us in all this was that they knew what it WASN’T, but they did not know what it was. Despite all the bloods, the scans, the examinations, the drugs, etc, nobody could figure out what was wrong with her. Parkinson’s, Lewey Bodies and Dementia had all been ruled out as her specific ‘presentations’ didn’t meet the criteria or fit the pattern for any them, simply because things were happening so fast and randomly. But it was patently obvious to us, Darlene was so poorly and had declined so much so quickly, it was difficult to see her coming back from this, even if they did eventually find out what it was. But we still had hope, and belief in the NHS and its professionals.
On Tuesday 23 April, having exhausted all his options, the consultant in Bridgend contacted a Professor Kirov in Cardiff UCI, who specialises in ECT (basically, electric shock treatment). He came and examined Darlene that day, and intimated in all his years of working, he’d not seen a patient in such a bad state as Darlene. He hinted she could be in some sort of deep trauma, or some sort of severe clinical depression, but was far from certain of this. He was prepared to try ECT the following week, but would check up on her again on Thursday.
On Thursday 25 April, professor Kirov returned to see Darlene. He was absolutely shocked to see how much more she had degenerated in the 2 days since he last saw her. She was completely catatonic by now and only receiving fluids sub-cutaneous. He wanted to consult with another professor colleague of his (prof Walters), who specialises in all things neurological before he would proceed with any ECT treatment.
Later that afternoon, prof Walters arrived at the clinic and thoroughly examined Darlene. We met up with him, Kirov, our consultant, and his team early that evening to be told the news that he thought it could possibly be CJD. But he wanted to refer the case to Ace McDermott in Edinburgh for his input/diagnosis first. My blood ran cold. I’d heard of CJD before, but didn’t really know much about it until later…
Friday 26 April. Ace McDermott had contacted our consultant with his initial observations. We were told its ‘Highly probable that Darlene has sporadic CJD’, and that Ace would video call us at 10.30 a.m. at the clinic on Monday to discuss his findings after he had looked further at test results, the CT, MRI, and lumbar puncture results with his team.
Monday 29 April.
The worst possible news imaginable. Ace confirmed he was 98% certain it was sporadic CJD. Classic tell-tale signs of the disease showed up on Darlene’s MRI scan. Ace actually showed us images of Darlene’s scan on our video screen (the same MRI she’d had on 18 March), and pointed out quite clearly the areas of the brain to look at that had been affected. My whole world began to crumble right there. My first thoughts were ‘why hadn’t the radiologists or neurologists in Bridgend hospital spotted these signs in the first instance’? and ‘Why hadn’t anyone reviewed the scan again, before it was eventually referred to Edinburgh’?… Darlene was put on a syringe driver containing a small amount of morphine, fluids, and something else, that afternoon. She had not been conscious now for over a week, had not eaten nor drank for 10 days or. No response to touch nor sound, although we kept her favourite music (opera) on in the background, and kept talking to her and stroking her.
Tuesday 30 April to Thursday 2 May 2024
The next couple of days were a total blur, a whirlwind, like the thing’s nightmares are made of, utterly traumatic and truly devastating. Darlene was completely catatonic by this time, totally unresponsive, was not swallowing (that was a horrific experience on its own) but she did very often ‘wince’, screwing her face up as if she were in excruciating pain (we were assured by the doctors and nurses that she wasn’t actually in pain, as CJD apparently doesn’t affect the ‘pain nor pleasure centres of the brain’ but I kept asking “How do you know that for sure”?). Myself, Dan and Aimee took it in ‘shifts’ to visit Darlene at the clinic every day. I did the early morning shift at 6 a.m. until 8.30 a.m. then Aimee 8.30 a.m. until 11 a.m. then Dan from 11 until about 1 p.m. We’d be home for lunch together then I’d go back in usually with Aimee about 3 p.m. until 6 p.m. Dan would then be there 6 p.m. until about 9.30. I’d go back in about 9.30 p.m. for half an hour or so, just to say “Good night” to my beautiful, precious girl. It was awful. I was heartbroken leaving her.
Darlene’s inability to swallow was a particularly harrowing experience to see. The nurses would come into her room every 40 minutes or so to clear here throat with a suction tube, and the syringe driver then included some sort of medication in an attempt of ‘drying up’ the secretions. It was horrible to see.
Thursday 2 May 2024. At about 6 a.m. that morning when I visited, Darlene’s breathing had changed significantly since I saw her the previous night. It was very shallow and in small ‘bursts’ now. Not ragged, not deep or wheezy or anything like that, just very shallow and staccato like. In my own heart, I somehow knew she couldn’t go on much longer. I spoke to the nurses, but was assured that nothing was likely to happen ‘imminently’ because her heart was so strong.
I sat with Darlene holding her hand, stroking her hair, talking to her about holidays we’d been on, the cruises, the fabulous times we’d had, the memories we’d made and treasured together, the wonderful children we’d raised and the 3 adoring grandgirls we had, all whilst playing some of our favourite songs off my phone. I CRIED. I CRIED A LOT. For some strange reason, I kept saying ‘I’m sorry’; I’d broken my promise to her by saying she was only going into the clinic to get better, not to end up like this. This is not the way she would want to go. Not at all…
My daughter came in early, as I’d phoned her. She too noticed the change in breathing since the previous day. My son arrived at about mid-day along with my sister and niece. All of us just sat there, unable to speak, sobbing uncontrollably, unable to comprehend how it had all come to this, and so quickly too. We all knew deep down; the end was near…
At 14.05 that afternoon, Darlene passed away. She was never able to say goodbye, she just slipped away in front of our very eyes.
I first heard of the CJD Network Support from Ace Mc Dermott. He put me in touch with a nurse from the Edinburgh Unit (Juli), who phoned me the day after Darlene passed away. I am now in regular contact (e-mail and phone calls) with Beth Marsh.
Being in touch and involved with the Network has been a huge plus for me. I have made a lovely friend in Beth, who has helped and supported me through the most traumatic period of my life. I’m now actively involved in fundraising for the network (running quizzes, raffles, organising Gala concerts, virtual horse racing nights, selling merchandise etc) and promoting education and understanding of what prion disease is all about. This has certainly helped me through my own, and my family’s continuing journey. It’s my prime focus now to help others come to terms with all the difficulties, shock, emotional roller-coaster and heartache we’ve endured over the last couple of months.
We as a family are still in a period of grieving. We will always miss our lovely Darlene… Wife, best friend, soul mate, mother, grandmother (Dee). She was genuinely one of a kind. Truly unique. They broke the mould after they made Darlene.
It is still early days yet, but with a lovely family and some great friends around us as well as the empathy and understanding of the Network Support people (Beth in particular), we will get through this. It is a long road ahead, but we are strong, loving, and well equipped to deal with anything this life cares to throw at us now.
Some emotions are slowly beginning to abate now; the anger, the frustration, the blame, and the guilt. But the “why her, why our Darlene” question will always be there. To that question, I can simply find no answer. I am well aware of what the term “sporadic” means, but when it actually happens to someone you love and adore, someone who was put on this earth to love and care for others before themselves, it just doesn’t seem right nor fair.
The CJD Support Network would like to thank Ian for sharing his story, which we know so many people reading this will relate to. If you would like to share your story on our website or in our newsletter, please don’t hesitate to contact us. If you require further support, our helpline (0800 774 7317) is open between 8am and 6pm, Tuesdays and Fridays.