262. A Jelly Miscellany…

It’s been how long?  A month?  Surely not…  Oh dear.  Let’s catch up then.

Back from our travels and plunged into getting the living room decorated ready for CarpetMan to do his stuff last Monday.  We’ve been working on this since the spring but with a week to the deadline, still had the fireplace to tile.

Pa lent us a whizzy tile-cutter which has a reservoir that you fill with water so that the cutting blade doesn’t overheat. As a side-attraction, while it’s running, it sprays out water from the front, so the operator doesn’t over-heat either.  As I’ve mentioned before, I’m a sucker for a power tool, and this was a goodie.  It’s a two person job really; one to operate it and the other to dance around next to them saying “don’t cut your fingers off!”


Being such a messy tool, we set it up outside so the short Winter days and the weather have added an interesting twist.  It turns out that being sprayed with freezing cold water in flurries of snow whilst cutting tiles by torch light is less fun than one might think.

Carpet duly laid – do pop in.  Then, last Monday evening, I went to speak at the University College London Medical Society.  Supported by PUK, they’d managed to bag lots of eminent neurologists to talk about various medical aspects of Parkinson’s: I was by way of being a Serving Suggestion.  The impetus for the meeting was the bicentenary of James Parkinson writing his paper on the ‘shaking palsy’.  It was a fairly miserable evening in terms of the weather but very encouraging to see young people keen to get to grips with the subject. No pressure, peeps, but if you could come up with a cure soon, that would be great…

Which brings me to Wednesday, when I morphed from Serving Suggestion to Guinea Pig for a research study about whether Parkinson’s has an impact on Vision.  There were various computer based tests to measure vision, the usual movement checks (touch your nose, then my finger etc), MRI and retinal scans and some cognitive stuff.  Trouble is, many of these research projects seem to use the same questionnaire, so I know the tasks by heart: face, velvet, church, daisy, red; they’re all fruit, vehicles, measuring devices.  I can count back from a hundred in sevens before you can say ‘Shaking Palsy’.

Then there were questionnaires about symptoms: which I always find rather dispiriting. Yes, I can feed and dress myself.  I can also operate a powered tile-cutter but for some reason they don’t ask that.  I do know that there are a wide range of possible symptoms available to accompany the Shaking Palsy, and one isn’t necessarily going to get them all but frankly, if it’s all the same to you, I’ll stick with what I have now thanks: the other options sound much less fun.

Next week will bring more Parkie stuff including, alas, the end of my six month Ambroxol trial, marked with a celebratory lumbar puncture.  I won’t miss taking the twenty one horse pills a day but I’m pretty convinced that the drug has made a difference to my tremor, so from that point of view, I’d have liked to keep going. It’ll be interesting to see what other participants have found.

So now we’re pretty much up to date.  How are you doing?
This is us, right now:

Have a good week – stay warm.



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