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John's Story

John started making mistakes at work because of memory lapses and poor concentration. He was afraid he was “losing his marbles” and his GP thought he could have dementia. He writes about the impact functional cognitive symptoms had on his life, as well as the things that helped him cope with his symptoms.

John describes his own experience with cognitive symptoms which were initially suspected to be due to dementia by his family doctor. John describes his experience with diagnosis of FCD and subsequent treatment.

When I realised I was losing my memory function and making basic school-boy errors at work it was worrying. I thought it was the first sign of ‘losing my marbles’.

My memory had been good and I was used to dealing with pressure (having been a military medic, fire fighter and community palliative care nurse). The harder I concentrated and tried to “check and recheck” my work, the worse things became. My mistakes became glaringly obvious to members of staff. This slippery slope of losing memory was stressful. My GP suspected this might be caused by dementia. I was afraid this would make the downward slope I was on become steeper and more slippery with time. This was frightening both personally and professionally.

Unfortunately I was formally disciplined by my managers for mistakes made at work on documentation and very nearly sacked, but for the help and support of my GP practice. They referred me to a specialist clinic and helped me negotiate a change of work roles (from district nursing to a supervised role on a ward). I was still making glaring errors despite my “check and re-check” without noticing where I was slipping up. I kept thinking like a firefighter with rope knots, “tie the knot, check the knot, move on’”. But my “knots” were often tied wrong, missing or tied in the wrong place. My working life was embarrassing, humiliating and sometimes my errors were potentially dangerous.

Domestically, I made mistakes like going upstairs and forgetting why I was up there, leaving taps and the gas running, forgetting appointments despite my phone telling me and double- booking social meetings. This made it clear to my partner and friends that something was slipping mentally. CT scans and mental health referrals took months, yet finally having a diagnosis which ruled out dementia was such a relief. This lifted the stress as I no longer had to think “how on earth will I manage with the loss of my job, as well as memory and confidence in my early 50’s?”

Having someone explain that hyper-vigilance aggravates rather than helps my memory has been the most help. Being given the insight to accept ageing and to have “senior
moments” earlier than usual has helped me cope. Why continue struggling to hide a glaring weakness? Mostly I smile now rather than scowl when tripped up by my memory. For example when coming home with less shopping than I went out for. It may seem practical to some of you to stop shopping by delegating it to your family to avoid embarrassment. Please keep doing your shopping badly. Just go twice with two lists (in case you lose the first) and wear a hat rather than lose your umbrella. Keep using your memory and find what works for you rather than accepting you’re a passenger. Happily there is no need for medication just learning to cope and muddle on. I’ve lost my job and some of my pride but I’ve been given time for my partner and me to cycle the pacific coast highway. There, nobody minds you peddling on the wrong side of the road, in fact it’s positively encouraged.

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