Where is the Beginning?

When a patient and carer finally meet a consultant or specialist nurse or similar to discuss concerns, one likely question asked will be 'When did this begin?' This question has been posed to me many times over the years, and I never know what to answer. This is because there was no clear starting point for my husband's symptoms. They just crept up on us.

I can look back and remember significant moments, but unlike birth and death or divorce or breaking a bone, neurological problems tend to emerge over time. So before I post my husband's current and complex diagnosis, let's journey back in time to a significant moment ten years ago. I call it significant now, but at the time it was just something that happened.

The year is 2014. My husband Chris and I are living in a large bungalow in Bexhill with about a quarter of an acre of garden.

Chris was diagnosed with type 1 Diabetes as a younger adult, and his eyesight has suffered. I had also noticed his energy levels were decreasing. So I now mow the extensive lawn and take an increasing role in maintaining the garden. We have a large vegetable patch and fruit cages hidden behind some bushes to the rear of the garden.

One day Chris tells me unexpectedly that he is not prepared to go down to the end of the garden anymore, unless I come too, because there is a man living down there. I know his eyesight is deteriorating, so I go down the garden on my own, check the shed and the fence for holes and tell him not to be so ridiculous. There is no man living at the end of our garden. Eventually Chris's obsession with the garden man just seems to fade away.

September 2023: First appointment with consultant neurologist. He asks 'Do you get hallucinations?'

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Fast Forward to 2023

Even after a visit to the GP in 2014 to explore the possibility of Parkinson's, medical opinion at that time was that Chris’s symptoms were a likely product of Type 1 Diabetes. After something of a battle, Chris was referred to Kings College Hospital and given a sensor insulin pump which alarmed if his blood sugar dropped. It was a life changing piece of equipment, and we were both trained to use it. I became an expert at ‘rewiring’ my husband. And so we reach 2023. Lockdown is over, and I have increasing concerns about Chris’s mental deterioration and his decreasing mobility and dexterity. We have moved to a large ground floor flat closer to the town centre, so that I no longer have a lawn to mow, and Chris can walk into town. However, his balance is poor, and he starts to walk with the aid of a stick. I buy him a small mobility scooter on Ebay. At his 6 monthly appointment with the Diabetes Nurse in early 2023, the nurse refers Chris for a Dr’s appointment t...

A Carer is Not Allowed to be Ill

On Christmas Eve 2023, two weeks after his DAT scan and three days after his MRI scan, Chris fell out of bed and couldn’t get himself up. He was very confused, and I dialled 999 for help. The paramedics arrived within 20 mins. These wonderful people got him back on his feet, helped him to the bathroom, and then back to bed. They submitted a referral to the falls service, who actually phoned later that day to apologise that they couldn’t make a home visit on Christmas Day! Suddenly we felt that our concerns were being taken seriously. Then on Christmas Day 2023, we both tested positive for Covid. The presents for the grandchildren were left safely outside to be collected, and we quarantined ourselves until further notice. I think this was the first time that one of the realities of being a carer struck me with such brutality. A carer is not allowed to be ill. We were both poorly. This version of Covid seemed to give rise to record breaking congestion and coughing. But...

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