Summer Update (June 2026)

Well, let's start with being positive - time spent in Italy and on Shetland does generally seem to be suiting me well.  

Patient Puffins Waiting In Line

Since the last post on this blog, I've spent a few weeks in Italy (mostly at REGEN in Boario), a wee bit of time in Oxford, six weeks on Shetland and a week pottering around in the mountains in Scotland.  All in all a pretty low stress (mostly outdoors) sort of life-style.   

Physically I feel pretty good, mentally (I'd rate things as) OK mostly if a wee bit fragile at times (just don't ask me to multi-task).

And I was starting to think about what I was going to report to my neurologist at our 'annual' appointment, and what needed to be followed up from past appointments.   The plan, as explained to me when I was first diagnosed, was that I would have an annual meeting with 'my' neurologist and an annual meeting with a Parkinson's nurse - with the meetings six months apart so I was seeing a specialist every six months.

This plan seems to have pretty much come off the rails.

The Parkinson's nurse went on long term sick leave, and subsequently passed away - and any PD nurse level of support has essentially been absent for well over a year - and there isn't any sign of a meeting in the diary.

I first saw my neurologist in 2022 (the initial diagnosis) then again in 2023 and in 2024 - in 2025 I saw a visiting locum - so I felt it was important that I saw my 'regular' consultant this year.  I was therefore not very impressed to get a message last week telling me that 'due to unforeseen circumstances' it has been necessary to cancel my appointment in August 2026 and that a new appointment has been made for me in August 2027.

I'm tempted to make light of the circumstances, and to make flippant remarks about it being just as well that Parkinson's is a slowly degenerative condition,  but actually I don't think this is good enough.  

If someone has made a clinical decision that I don't need to be seen every year it would be good to know that, and certainly no one has offered any contact route for me to request support.  

It's just as well that apathy isn't one of the most common symptoms of Parkinson's Disease...

Oh, wait.  It is.


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