Lynne's story

Lynne, originally from Belfast, was diagnosed with young onset Alzheimer’s disease aged 64.

Below, in her own words, Lynne has shared her experience of receiving her diagnosis, the support she has received from her Post Diagnostic Support Link Worker and how she lives well with dementia.  


'I'm still dancing'

I moved to Aberdeenshire in 2018 to be with family and grandchildren. I’d had a long career as a nurse, working in Ulster Hospital for 20 years in a job I adored and when I moved to bonny Scotland, I started a clinical research post in the clinical pharmacology department of Aberdeen Royal Infirmary. 

I began having memory problems after starting menopause aged 49. I noticed things here and there, but nothing major that affected my work. Then, in 2013, I was involved in a car accident which left me unconscious for some time. Afterwards, the memory loss was exacerbated but I still preferred to associate it as a symptom of menopause, rather than anything else. However, I had a niggling feeling that maybe it wasn’t. 

After moving to Scotland, I settled down in my new job. There was a lot to learn and before long, I found I was surrounded by yellow sticky notes and diaries, to remind and prompt me to do things – and as learning notes from all the new courses I’d had to complete as part of a new job with the NHS. I became aware that my short-term memory was abysmal; I was relying on these reminders and prompts more and more. 

During the COVID-19 pandemic, a few of us were seconded from the hospital to University of Aberdeen Health and Sciences lab to do research into vaccines. This involved learning new skills relating to biochemistry lab work and centrifuging blood sampling. Again, the yellow stickies began to take over my life, not to mention the lab area! On one occasion, I had no recollection whatsoever of centrifuging blood samples or even starting the machine. At this point, I arranged to go back to my GP, having visited once before, 8 months previously for memory problems. Back then, I had been tested and reassured that the issues I was experiencing were stress related. 

At my second visit to a GP, stress was reiterated as the most likely cause of my memory lapses. After all, in the last few months, I had sold my home in Northern Ireland, moved to a new country, started a new job and to throw even more into the mix, a marriage break up of 40 years… so stress it must be.

But after a while, I started to develop speech problems. I couldn’t get words to drop down from what I call my ‘inbox’, leading to some hiccups which I found very embarrassing. I gradually became quite reclusive and anxious, only visiting my family or shopping locally. As time passed, I decided to seek medical advice again. At my third GP visit, I was again diagnosed as suffering from stress – but this time, it was agreed that I should be referred to neurology at Aberdeen Royal. I was seen very quickly by a lovely consultant and expert in this field (a demi-God!). After a third testing process, it was explained that there was cause for concern, with the consultant suggesting I get Power of Attorney set up with family. 

I was taken aback - I was waiting to hear that overused word ‘stress’ again and I was about to apologise for wasting his time. The consultant was very thorough and even when he said, “I’ll have to go out and speak to the Consultant Psychologist", my daughter and I were laughing because she said that was probably because I’d got more answers right than her! But, after a CT scan and a brain scan, which my son had arranged privately, the consultant told me, very gently, I had Frontotemporal dementia. However, this subsequently changed to a definitive Alzheimer’s diagnosis. 

When it was suspected I had frontotemporal damage, there was no medication. But once I received the Alzheimer's diagnosis, I was prescribed donepezil (Aricept). At the beginning, I had a bit of sickness – losing 3.5kg in four weeks, just through nausea. Then I had norovirus. But now I have no side effects whatsoever. In fact, I’d be lost without it. If I ever forget to take it, I notice a difference within one day. For example, I fell asleep two nights ago and forgot to take it and I noticed an immediate difference. My thoughts weren’t as clear – I’m much more focused when I’m on it. I can also speak fluently again without the word hiccups. I haven’t seen a lot of my friends from Aberdeen Royal since my diagnosis because I was too embarrassed of my speech. So, I’d like to say – if anyone reading this has any worries, go as soon as possible to get things checked out. 

I could have consulted with the neurology clinicians back in 2018 when I was working in Northern Ireland – but, despite my instinct, I’d convinced myself that my memory problems were down to the menopause. I worked with a group of girls in that age group and that’s what they thought it was – but it wasn’t. My grandmother had dementia, my grandfather had Parkinson’s, my aunt had vascular dementia…so I just always had this niggling feeling. And when I had the mind blank in the lab, I knew that wasn’t right. Then, with my speech affected, I just couldn’t see the menopause or stress causing that. 

I took it quite badly when I was initially given a diagnosis of frontotemporal dementia but for some reason, now I know it’s Alzheimer’s, I haven’t looked back. I get out and live my life – and I still have my sense of humour. I’m in touch with a lot of doctors back at home and when they heard about my diagnosis, I pretended I’d forgotten their names when they called to wish me well.

Donepezil has helped enormously. I can focus, clarify words and thoughts more easily, and verbalise more, without any word hiccups. This has given me my confidence back and am not as fearful or anxious for the future. I do still have sleep problems, with nightmares and hallucinations – but I can cope with that. I am happy in my little cottage, living by myself but surrounded by family and grandchildren. I childmind a couple of days a week, am still driving, go to beautiful Sri Lanka twice a year, eat a lot more healthily, drink more fluids, and enjoy gardening and dancing - I love to dance! 

In fact, taking donepezil, I know I could still do my old job in Ulster.  I did it for 20 years – I could do it with one hand tied behind my back and blindfolded– even with Alzheimer's! But it’d be a different story at Aberdeen Royal, simply because it was new and there was so much learning. When I was trying to juggle that, the wee yellow stickies – they were everywhere. All around the computers, the station – everywhere! I also had two or three diaries to help me keep on top of things. 

Now, day to day, I am grateful to my consultant for his ongoing regular appointments and help. It’s so much appreciated by me and my family. And Lori, my Alzheimer Scotland Post Diagnostic Support Link Worker, she’s worth her weight in gold. Along with my family’s love and encouragement, and their interest in Alzheimer's developments, I’m surrounded by a solid support network. And a certain amount of humour always helps on any bad days! 

I’ve really enjoyed writing this piece – although I’ve always loved English and writing, I haven’t had a chance to do it for a long time, and I’ve found it quite a cathartic process. I called it, ‘I’m still dancing’ because that’s the truth – I dance every day. I have my grandchildren dancing, we practice routines, I love it. But I’d stopped doing all of that for a while because I thought, ‘well, I have dementia, I can’t do that anymore’. But I can! I can carry on, especially with the drugs, they’re brilliant. And I know there are more and more being developed. 

Now I have my life in a box beside me. I have my big purple book with everything I need to do written down, and I transfer that to a separate diary and a dementia book that Lori gave me. I fell and broke my ribs a few weeks ago – I have osteoporosis as well; the list goes on! This is the third time I’ve broken my ribs but anyway, as they say back home, ‘every day above ground is a bonus'!