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REAL LIVES|LARRY’S STORY|LIVING WITH DEMENTIA
  Bringing ALL the pieces together to make the final diagnosis didn’t fit the pattern...
Larry speaks clearly and honestly about his life changing experiences living with Dementia
He tells us how his life has changed since he employed his Personal Assistant - Ildiko - a young woman from Hungary who has helped Larry transform his life
Ildiko, Larry’s PA gives us an insight into her role and describes how her job came about and how it has developed
Larry and Ildiko tell their stories Read on...
Larry writes: Hello, my name is Larry. I was born in 1952, this makes me 63 now. I want to tell you what my life has been like recently. About 15 years ago, whilst I was working hard late one night, I suddenly felt disoriented, confused, weak and tired. These sensations were accompanied by a blinding headache and a sort of weary clumsiness. What did I do? I simply assumed that I had been overdoing it. I decided to take a long weekend break and do my best to recover assuming I would be better after a rest but looking back now, I didn’t get better, I got worse, I started to become increasingly forgetful.
At this time my employer was involved in a merger with a competitor I was responsible for leading the post­merger integration ­ a massively complicated task. It meant frequent overseas travel, hotel food, jet lag, poor sleep and long hours, which began to take their toll. I had more of the blinding headaches and weary clumsiness but kept on ignoring them until one evening at home I collapsed face down into my dinner and passed out momentarily. My family were amused at first, and then astonished, they assumed I was larking about, but when I couldn’t extract my face from my dinner they called an ambulance. I later learned that these episodes were Transient Ischaemic Attacks (TIAs), mini strokes. After taking some time out I returned to work.
My colleagues soon realised that I really couldn’t work to my pay grade any more. My employer offered lighter duties with less pressure until eventually in 2008 I had a stroke which caused my mouth and eye to droop, and weakened my arm and my leg.
My speech was unintelligible at first and I was unable to walk as well. Recovery from the physical consequences proceeded quite well in the beginning and over time there has been some improvement ­ my face is still slightly lop­sided, my foot drags when I’m tired but I can talk for England, so in many respects, I’m doing well! My general cognition, functioning and memory, however, did not fare so well and my behaviour became rapidly chaotic. This was the most debilitating feature of my stroke, it affects many people like me, we recover some functioning and gradually improve but there is a marked loss of memory. In my case it was due to a bleed or infarct in the brain. My GP became concerned when it became clear that more memory problems along with confusion were causing me difficulty. I was referred to a memory clinic for assessment. The consequences of a stroke can sometimes involve the onset of cognitive impairment ­ not all cognitive impairment progresses to become dementia. However, it is understood that there is a relationship between dementia and stroke.
It is estimated that there are 42,325 people in the UK who have been diagnosed with young onset dementia. (Ref Dementia UK, 2nd edition 2014, Alzheimer’s Society). They represent around 5% of the 850,000 people with dementia.
The investigations have taken a very long time and at the moment are being repeated. My clinicians tell me that I don’t fit the usual pattern but it is clear there is a memory disorder symptom progression. Assessments have been thorough and exhaustive. I have
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