Shaken

Let's just assume that all the posts on here are left to mature before I hit publish.  This one has been maturing in the drafts folder for about three months.  One of the things I'm noticing about my condition, is a reluctance to tell people about it.  I have heard fellow sufferers talk about the 'shame' of having Parkinson's and I don't think it's that, if anything it's a fear of being the 'centre of attention'.   I was at a small social gathering a while ago, almost all people I know, but only two knew (as far as I know!) about the diagnosis. And perhaps inevitably I found that the symptoms were worse than usual. Some people (those damned extroverts) would no doubt have waltzed into the room, and announced that they were a Parkie.  That's just not my style.  The other challenging communication thing for me, is keeping up with a busy conversation around a room - I can follow the conversation, but I really do struggle to contribute in a timel...

Take 2.  I started this post in June, but it never quite got finished (it's now August) - but it feels important to pick it up, and shake off the dust and try again.   No Worries - Calm Evening at Sumburgh Head In previous posts I've talked about some of this physical symptoms of Parkinson's, this is (I think) the first time I've focussed on one of my mental health symptoms. Anxiety.  I started writing the post just after I returned to Shetland after visiting REGEN in Boario, and seeing my (stand-in) neurologist in Oxford for my 'annual' check up. At the check up I reported on what I can only describe as an anxiety (or panic?) attack.   It wasn't a 'dramatic' episode but came from having a bad feeling that I'd left the cooker on when I closed up the house to head into London to catch the Eurostar to Paris.  Yes, I know everyone has worries like this - but I was getting to the stage of trying to figure out if I had time to go home, check the cooke...

 I said (mostly talking to myself) that I'd try and make these updates 'regular', so how am I doing? Well, this is update #15 -  I am managing 4 or 5 posts a year - which seems about right for a slowly evolving (devolving?) condition. Owners of older cars have the annual rite of the MOT. Parkinson's folk (if they are lucky) get an annual meeting with the neurologist. The intention is that I should see (and be seen) by someone every six months (alternating between the neurologist and my Parkinson's nurse). My Parkinson's support (in Oxford) is still OK, the neurologist appointments may be slipping a bit, but the Parkinson Nurse system does spot if the gaps become too long and add in an extra Nurse appointment. The appointments (with either the neurologist or the nurse) are a good prompt for me to review how I think I'm doing and to reflect on what might have changed (akin to checking the tyres, bulbs and wipers ahead of the MOT). My next neurologist appointme...

This (mid-November) seems like a good point to update my PD blog. Since the last posting I've spent a month in Italy (which was grand, two weeks at REGEN and two weeks on holiday in Val Gardena and in the Stubai Valley (in Austria)) and a month mostly in Oxford (which was not so grand). In the Dolomites So why the difference? Aside from the obvious, the weather was better in Italy than in Oxford, the food and wine was better and served at very regular intervals and we were staying in good hotels and were waited on hand and foot, why did 'travelling' time seem better than 'home' time and what's this got to do with Parkinson's anyway? I'm coming to the conclusion that there are two (possibly related) issues.  Firstly, physical health.  I so often feel better when I'm away from Oxford - sometimes (like this autumn) I pick up bugs when I'm travelling and bring them home with me, which means that during the first few days back in Oxford I feel really ...

The story so far. Summer 2021. Fell over a couple of times, noticed a tremor in my right hand. December 2021. Self-diagnosed Parkinson's Disease. April 2022. Diagnosis confirmed. April 2023. First visit to REGEN February 2024. Started taking PD medication.  August 2024 Medications working well. Since the last update I've spent a month travelling in northern Norway (by boat, train and bus) and have spent the last two months in the Shetland house mostly photographing puffins at the south end of the Shetland mainland. The motor symptoms of PD are generally under control. I do feel stiff early in the day until the morning meds have kicked in (I and my PD nurse have a plan to address this), my hand tremor does occasionally interfere with my photography (I can't always press the shutter button as quickly as I'd like to capture action shots) and computer mouse control is sometimes frustrating (don't even mention double-clicking).  The non-motor symptoms are a bit harder t...

 I'm not sure why, but I've been reluctant to out myself as a PWP online. However since 11th April was World Parkinson's Day and I was back in Boario for my third visit, it just seemed like the right time. This is what I posted on Blipfoto (which I shared on Twitter/X and on Facebook) and on Instagram.  Some of you may have spotted that I keep pitching up in a rather picturesque wee Italian spa town in the Val Camonica in Lombardy, and I’ve been a bit vague about why. And since today is World Parkinson’s Day, it seems like the right time to say more. In April 2022 I was diagnosed with Parkinson’s Disease, and shortly afterwards (via a friend of a friend) I was told about the European Parkinson Therapy Centre in Boario Terme. My first visit to the Centre (locally called the REGEN Centre) was in April 2023, then again in Autumn 2023 and I’m now back again for some more individual neurotherapy, or pampering as I prefer to describe it. Parkinson’s Disease is the fastest growing...