I gave Younger an impromptu lesson in mindfulness today. We went to the shop and we bought some bread. Just baked. And it smelt wonderful. And I gave it to him to sniff and I said to him darling, this is what you have to remember. What does that smell make you feel like? And he It’s made him feel warm and safe. And that was the point.

And here is today’s poem…


Knowledge 1

Discovery is an interesting concept.

A tiny piece of knowledge, of information and your life can change beyond recognition.

I woke up this morning and I looked on YouTube and read a video blog of somebody’s diagnosis of Parkinsons.

Incredibly ,they got the diagnosis from standing start to full knowledge in less than 24 hours which is almost unheard-of in these NHS delay ridden times. And the thing that made me stop and think was not the diagnosis itself – it wasn’t even the speed – it was the fact that the guy telling the story was sitting next to his partner and that she had been there for him throughout the process. And five years later whatever she was still there, finishing his sentences for him! Obviously, this struck a chord with me in these straightened times. And it took me back to my diagnosis 10 years ago.

Parkinson’s UK and similar organisations are always saying that sharing the story of your diagnosis is helpful to others, so here’s mine. I think it’s pretty typical but nevertheless it’s interesting to me! There’s quite a lot so I’m splitting it over a few posts…save your tired eyes!

So, I was a healthy 35-year-old trying for a baby and full of career ambition and angst just like most people. Until I noticed one day that I was brushing my teeth with my left hand not my right and I thought “that’s weird” but didn’t do anything about i. Then I noticed that I couldn’t eat using my chopsticks as well as I had been able to. Now anything that gets between me and Chinese food is something serious – needs to be dealt with immediately. So I made an appointment at the doctor feeling very proud of myself, thinking things would be dealt with quickly. I went to go see him And he did all the normal tests and checked my capabilities on both hands and said “I’m not sure what it is, come back in six months if it’s still the same”.

Anyway within those six months I got pregnant and was understandably distracted, so never went back to the doctor and my hands got a little bit worse, but to be honest, the fun and games of pregnancy at the age of 36 by now were more engaging and so I didn’t do anything about it. My eldest son was born in March 2006 and I noticed that my hands were beginning to really hurt. I went to the doctor and I was diagnosed with de quervane’s syndrome and possible carpal tunnel. They did all the tests for carpel tunnel and couldn’t rule it out but couldn’t specifically diagnose it either. So they decided to do the operation on my right hand because it seemed a sensible thing to do. This was after having lots of incredibly painful steroid injections into my wrists and I said “well it’s going to be very inconvenient not be able to drive two weeks, before I have this operation is there anybody else i could see just to make sure that we’re happy that’s what it is “.

And that’s how I got to a senior respected neurologist who took one look at me and said “well I need to do the testing to discount any others conditions but I think you’ve got Parkinsons”.

I was by myself. I had had no warning. No inclination at all. Completely out of the blue. I don’t remember leaving the hospital but I remember walking home from the hospital in a daze. I phoned my husband on the way – I don’t remember what I said – I think I just decided to ignore it and get on with life as best I could. I mean I had a little boy, a tough job and hopes and dreams – it just seemed unbelievable. Therefore it wouldn’t have a place in my life.

And I carried on. I stayed in my job, travelling nationally and oversees, I had another son (and a miscarriage), I taught myself to write using my left hand, I learnt how to rest when no one could see so I appeared ok. I hid PD from everyone really even though I told people. I didn’t hide the words but I fought against their meaning and implications. I think many people do if they are honest. And it worked. For a few years. And then suddenly, it didn’t….

I will post the next instalment soon. What did you do when you were dx?


It is fair to say that a binary style is a more Familia system to me. I have not lived alone in years… I mean decades. And the biggest challenge I find is coordination. Not only my physical actions (let’s face it, with Parkinson that was always going to be an issue!). No, I mean coordination of practical and creative aspects of my life. I find I have to coordinate not only internally but also obviously, with my family, my workmates and my friends. When I say workmates I really should say friends too as I have been lucky enough to meet and create with some wonderful people recently. You guys know I set up the studio space here in Gloucestershire last year… It carries on and is doing well and I have been so lucky with the people I have met through it. So what is the point of this post? Why am I rambling on? Well, I recently had an operation on my hand and whilst I’m sitting here waiting for it to stitch together I have been thinking about what other things need to come together to make my life happy, easier to manage and more aligned with everybody else in my life. And here’s what I’ve come up with:

Write it down – I have so many ideas going through my head right now I finally accept that the only way I’m going to remember or recall any of it at a later date is to write it down. Obviously, writing can be troublesome at times to me so when I say write it down I mean dictate it down really. And to that end my second point is

Siri is your friend – I have hated using Siri because I felt such a twit saying hey Siri but, I have to admit, especially in these times of not having a working right hand the electronic personal assistant is my friend that does help me do all sorts of things easily including this post. Sorry Siri.

Being organised is not a bad thing – now this one sounds counterintuitive – – – I mean I’m always saying I want to get organised. what I hate doing is being told what to do and what I realise now is, in order to be organised I have to have a place for everything and everything In its place and that means telling myself where to put things consistently every day. And I have to live with that and I have to accept it and if I do my life is so much easier. I rest my case. In its place.

Take small bites – by which I mean do not try and eat the whole thing as you will be sick. I will try to blitz a room in one go – empty and tidy and clean it and redecorate and rearrange, whatever. This is a recipe for disaster. It would be for most people to me even more so because I run out of energy then I get really upset. I have to stop doing this it’s crazy. So slow and steady unfortunately.

Accept help : I struggle with this one. I hate asking for help because I think it makes me look week. And in particular having Parkinson’s puts me at a disadvantage immediately – I am weak! The answer? When help is genuinely and generously offered I need to acknowledge and take it when required. My friends have been awesome and in fact they have been for years. I need to appreciate it – I’m a very lucky girl.

Don’t sweat the small stuff – you have heard this one so many times I’m sure… Prioritise prioritise prioritise.

look after myself : easily said hard to do. I find it incredibly difficult to do this without feeling guilty but I have learnt the hard way but if I do not look after myself I will crash and burn again on that damages my family. So it’s a no-brainer really.

I’m sure there’s loads more just can’t think of any more the moment. I’m also conscious that I have to get up and try and have my first bath or shower since the operation. I have my Ziploc bag ready to take to make myself an impromptu water mitt!?


There is a very well-known saying that there Are only 2 certain things in life: death and taxes. Well, I have been exploring a related third certainty: the need to work in order to provide sustenance. There is a lot of philosophising around the ‘post work’ model of social structuring. Basically, as machines become more intelligent and capable our requirements for human workhorses will reduce to such a level as to render the concept of work redundant in itself. We will not have to work any more. Discuss.

You probably know I am doing an MA in visual communications and my project this season will be all around this idea of the post-work social landscape and how you can think about it visually. I’m thinking about the possibility of a new kind of landscape painting/drawings/whatever… Instead of a geographical or physical Landscape what about the social world? I was in the library all day today looking at this and it really is quite interesting in a geeky kind of way… Looking forward to sending some more stuff in your direction so you can have a think. It’s really interesting when you get into it… And hopefully the artwork that comes out of this will be a bit different. Well, let’s face it, it wouldn’t be me if it wasn’t slightly off the wall would it?!


To Venice…yes, you heard right. I’m in this lovely city for two nights. I booked a cheaply flight ages ago and was coming out to go to the Bienniale but instead I have spent my time at the Peggy Guggenheim Collection. Why Peggy? Well, I haven’t written about it yet but I was a contestant on a British TV show called Mastermind recently. Now this is a BIG THING for me…I have watched MM since I can remember and have harvoured a fantasy of being a contestant for years. Reader, I did it.

I applied a couple of years ago and to cut a long story short, was accepted out of loads of entries and filmed my episode over the Summer. You can find a link to it (episode 13) here. My specialist subject was the wonderful Ms Guggenheim so I felt duty bound to go and pay my respects.

What a wonderful place. I stayed almost all day. Really, you have to go if you get the chance. My phone is charging at the moment so I can’t post the photos but I will return. Just wanted to get this down while I can. See, I’m trying to be sensible!


I am in treacle and that’s not a good thing. I am trying to stride through life, I am trying to maintain momentum. But I realise I have to, and I mean HAVE to, pare it down, strip it out and get back to my core. Back to the most important things in my life….family and art. That’s it. So although I have done a LOT of decluttering and reorganising recently I still have a way to go and I have to re-examine what I spend my time on.

I am also taking part in a pilot online self management programme for Parkinsons’ uk which I will update you guys on as soon as possible. It’s great though and has shown me how rich and varied my life and experiences can continue to be. New spins on old thoughts and shared experiences are challenging my assumptions.

Put these two shake ups in my life at the same time and you have a chaotic mix, throwing me around but, hopefully, leaving me at rest in a better place. I’m still slewing aroundbut am trying to get my new bearings and they are falling into place.

Life is so valuable and rare, I want to grab it even harder but the skill I have to learn is how to embrace it without taking in too much. And how to remember to take my meds. Important one, that.


Let’s try to explain what the past couple of months have held by considering maths’ interpretations. stay with me on this one…

Space is defined by three coordinates based along 3 axis, x, y, z – get those three positions on the three axis and you can pinpoint where you are. now add in time as a fourth dimension and you can plot your position and your journey. so far so good.

Now, what happens if you are plotting along and then somebody starts messing with the axis – the past positions you carefully documented are now no longer relevant to you, now or in the future  because you can no longer compare the present with the past – if you had apples in the past, you have pears now.

Imagine now that this misalignment is then compounded – what if the scales on each axis were amended, randomly, with no proportionality to each other. Chaos right? now you can’t even plot where you are and the future is similarly impossible to plan.

interestingly however, the plotted points themselves will find it nigh on impossible to understand the implications of these changes – they are too close to see the curve on the axis, the flexing of the scales. They just know they exist and that they are ‘here’ .

Well, that’s what life has been like recently…I was/am a plotted point if you like, my axis have been distorted and I have only recently realised. I am changing that. The result is disorienting but it is also rejuvenating because, now I know which way is really up, I can stop having to compensate for my skewed position.

I know I seem to be speaking in some kind of convoluted metaphor but I have found the comparison between life and maths to work quite elegantly. My goal now is to straighten my lines of sight and to find a new normal.


It's October, the air is crispier and so is my life. Stitch Towers is under new management (mine) and life is both challenging and stimulating. I am middle aged, I admit it, but I have never had to fend for myself until now. It's not a barrel of laughs but I'm not drowning quite yet. I am unhealthily interested in household organisation tho. I admit.

This whole experience is making me realise that despite the plethora of domestic bliss/homemaking blogs, books and advice, what goes on behind closed doors will remain a mystery until we choose to disclose. And most of us don't choose. So, the stories I have been hearing recently from friends who have trusted me will in the main remind hidden. And that means that the perpetrators of domestic unhappiness will continue unhindered and will never truly understand the impact of their behaviour. I come from a quite well healed area where middle-class guardian readers like to drink their Pinot Grigio wine sitting in their beautiful gardens. But that image is just that, an image. Such unhappiness and frustration can lie underneath it all.

I am choosing to walk away from unhappiness. I hope this blog will become happier and more frequent as a result. I have missed you guys.