I'm not using this blog enough and Ihave decided to change things around a bit. I hope in the next few weeks to start putting up more serious stuff and better links to good (in my view) stuff about Parkinson's disease.

The blog will still be about the business of self-help with Parkinson's and may not have much to say about medical treatment. So I'll say at the outset that I use conventional drug therapy, with enthusiasm, and appreciate the help I get from my GP and my local Hospital, Dorset County.

I may  say things about specific helpers such as family members and complementary therapists but I will be checking with them first!!

Hello again world.

I am currently a rather achey person who has a tendency to night terrors, possibly due to meds, and some tremor which makes a nuisance of itself when I need fine control of my hands, and this gets worse when I'm tired.

This would seem to be Parky doing its thing. I am going to call the specialist nurse this week to discuss next steps medication-wise. She has concerns about my nightmares, which can, briefly, continue with my eyes open.

This is some of the detail on the surface at the moment. Stepping back from my life I notice a more insidious thing  which Parky does to my time. Not life expectancy, but just getting things done in a day and being able to then let go. Paperwork is a prime example - it feels like a mountain and because I am slower at it now it is, if not a mountain, about 1 weeks work due all the time. And not enjoyable work either.

Stepping back further - trying for a bigger picture - I have some quibbles with myself. Did I ever LIKE paperwork?? Maybe I'm looking to the disease for excuses? As for time, we have had three years involved with my parent's passing, and executing their wills, and we have a grand-daughter, and everyone is visiting everyone more... This all takes time and has nothing to do with Parky.

So I may be conflating normal life events, with a dose of self-pity, and a flirtation with gains-from-the-illness. Also known as secondary gain, or epinosic gain. (Pedant!) Elsewhere in the bigger picture is something else about me - I am a bit of a space-bat, liking to get away from people a lot of the time. So maybe I could just say that, and negotiate for times out, without hiding behind anything.

Complementary Therapies

I've been thinking about what therapies I do and what therapies I want to do and what therapies people suggest to me.

If I had a go at every therapy or healing practice that people have suggested, I wouldn't have time for anything else.

Suggestions have included various rituals to get angel(s) on my side, chiropractice, healing(spiritual), psychotherapy (to discover the deep meaning of my making myself ill this way), mindfulness, and one particular comment - almost a whisper in my ear - "Of course, you don't have to have this, you know"

What I do (apart from straight medicine at my local hospital, which I utilise with great enthusiasm) is:

• Emotional Freedom Technique. I've had training, enough for work on myself. Sue uses it now I've shown her how to do it. Its not always effective, but it can help a lot. Its non-intrusive.
  
• Stretching,more or less as physiotherapists would offer. I use Bob Anderson's book,Here it is on Amazon with care, and I have checked out what I do wth a neurophysiotherapist.
  
• Work with weights and other strengthening exercises. I got a few tips from websites but I now tend to use Getting Back In Shape by Anderson, Pearl, Burke, and Galloway. Here it is on Amazon Again, with care, and with advice from a professional when I need it.
  
• Acupuncture. For back problems and tonic treatmets. Wonderful, but then I'm not queasy about needles. I rarely get away with less than 20!
  
• Spiritual Healing. I've had one mixed experience of healing for PD, which gave me some ideas to work on. I have no doubt I'll use it again, having used it off and on for twenty years or so.

And that's about it at the moment. I think EFT, acupuncture and healing all work within 'energy' models of wellness and illness and have a lot of common ground. I'm looking for a chi kung class. I like energy work. Meanwhile if I meet someone with a zealous belief in another therapy I 'should' be using, I'll give them a hearing, but I ain't going to try everything. Life's too short!

The Art Of Twinkling

Dear Bloglodytes

On a recent holiday on the Pembrokeshire coast Sue and I got in to a conversation about twinkling. This is the name Sue gave to smiling, particularly with the eyes, which is something I lost when Parkinson's set in. Even when I was very happy, I looked very glum.

What I did a few years ago when she first mentioned it was practice twinkling in a mirror. And I found it relatively easy. Sue approved of the results. Face-exercise was true to my practice of doing some sort of rehab for everything Parkinson's seems to have taken away.

On our holiday Sue said words to the effect that I had quit twinkling. I hadn't been practicing, certainly, but just to show her I still could, I twinkled at her. She was able to report that absolutely nothing had happened on my face.

I had lost calibration on smiling altogether! I had also failed dismally to maintain practice at it.

Since then I have got back to twinkling. Sue gives me feedback - it turns out that if I force a smile too much, my upper lip starts to lever out from my face like a garage door. Not a good look. Best to take it gently.

Best of all I have rediscovered that smiling on the outside makes me smile on the inside; And it makes Sue smile more too. And that makes me smile.

My grand-daughter Iris makes me smile too. And it feels natural.

On a technical note, here's a principle for you: the outside of your body is a critically important part of your mind.

Comments welcome!

How to spill food in a relaxed manner

This bit joins on to the bit about spilling salad which I wrote in May 2010.

Since writing that I spill chopped salad because of tremor in public but not in front of my family, I find that I now spill more in front of my family than I did before I noticed that I didn't, if you see what I mean. This is a little vexing, an effect of researching my own experience and making myself self-conscious, I guess.

Anyway, I am going to try disputing my beliefs around salad-spilling. I need to brush up my arguing skills, preferably with someone who can argue back and tell me if I'm making sesnse. I'm going to dispute with myself with an audience, i.e. you. The subject is

Who the hell cares if I'm a messy eater?

Well I do, a bit. Actually, a lot. Especially because my 'PD' hitches a ride on my noticing signs of it. I get in to a circular argument (I can't eat properly - my disease is getting worse! Cue anxiety, cue tremor) and I get thoroughly cheesed off. Actually not a circular argument, its more like a fugue (in a small way). The thought, 'I'm doing Parkinson's' leading to anxiety leading to worsening symptoms and so on while the sensible me, who might come up with strategies, for example beat everybody else to the draw by mocking myself, is temporarily unavailable.

- What have you tried so far to deal with this?

[Sidebar with my reader: never plunge in with heroic advice. Always look for stuff the helpee is doing to help themselves.]

Well, I noticed it happening, which was good. I didn't label it 'PD symptoms come and go' which would have disempowered me in this and many cases. Although they (symptoms) do come and go. I resolved to review the way I was seeing myself and find out how to think, and act, in ways which helped me at least relax and hopefully gave me control of the fugue thing.

Then I sat around for six weeks doing nothing about it.

-Aha!

Well, not quite nothing. I've tried out The Old English method, which is to say 'B******s' to it, which is fun, but doesn't do much. I've begun to realise that I need to include evidence gathering in my self-investigation... such as, how many people have noticed my messy eating so far? None, whatsoever, ever. Also I need to keep on looking around when I'm eating in public, for a while, to see for myself who is watching me.

I've also tried spearing my salad etc instead of balancing it on the fork, but this is accomodating too much to PD so I limit it.

-How do you mean?

I mean concessions to the disease have to be delayed. Especially as there is a psychological and existential 'aura' of effects around the biological condition. I don't want to make changes which are necessitated by my false processing of the disease. That risks starting 'symptoms' early. And, I have a belief that even when symptoms get serious, keeping up healthy routines as much as possible delays their becoming debilitating.

-I think we're getting too general.

Maybe. Anyway, I also tried (at home) forking in a huge portion of leafy sald all at once. If you have to eat salad, do it quickly, kind of thing. Rocket may be boring, but it helps tie a big forkful of salad together, I thought. My thinking here was sub-optimal. My lips and tongue did not join in properly. I ended up with a large quantity of salad half hanging out of my mouth and had to take it in with sort of lunging bites,a bit like a dog eating a squirrel.

-So you've tried a few things....

Yes, a few. I'm now six months away from that post about spilling salad and I am less bothered about eating limitations than I was. I think pointing to my messy eating in a blog has had a good effect. The blog audience makes me think a bit more than I would otherwise... I also re-read a bit of Albert Ellis, a great arguer against futile thoughts.

I'm posting this now, there's football on the TV soon, and a Tub of Ben and Jerry's in the fridge. Questions and comments welcome.

A social impulse stirs

Its me! In a spirit of democracy comments are invited on the following question:

Should I do a blog of occasional earnest bits mainly around Parkinson's disease

or

would you prefer a more frequent blog with wider musings and fairly loony bits in it

or

both?

I will take all your comments very seriously (unless they're funny) before deciding what to do. Or possibly I'll decide what to do before you've commented. I think I have a preference already!

On spilling chopped salad from my fork

Inspired by my last post I have another observation to report. We eat a lot of chopped salads at my house. Some I like, some I think, "This is doing me good."

Anyway. When eating out or wth friends I notice how difficult it is to balance a forkful of salad, and not have it spilled by my tremors before it reaches my mouth. (Peas likewise.) The tremor seems to get worse as the fork nears its destination. This is mildly embarrassing; not as bad as drooling, but I'd prefer to do without it.

Having started to focus on this, in a somewhat morbid way, I discovered that my fork does not tremble when I am eating alone or with Sue and my immediate family. This is pleasing.

So what?

With drooling and with spilling food there seems to be a layer of my particular 'Parkinson's' which is not strictly organic but which arises as a result of the way I process aspects of myself as social objects.

Huh?

-That is to say, I have a model in my mind of how social ineractions might go. I base my expectations, for example about drooling and spilling food might be received, on that model. The model might depart from current reality in places. It was non-consciously formed many years ago. So I could have an accurate predictive rule about spilling my peas just before they reach my mouth: some people might laugh at me. But I could have a rule which goes: Everybody will laugh their heads off and I'll want to die. The latter rule, which includes childish over-statements, may be applied without thought.

A person with lots of anxiety-provoking rules about social situations will seem inhibited in public, assuming they can get out of their house,that is. A person with very few such rules will probably seem to be an awful slob.

It may be possible to identify where you might change your attitudes so as to help you attain your desired goals. So for example I'd like the rule that stopped me drooling on the bus to stay with me. I'd like the rule which makes me tremble as I feed myself particulate food in company to be changed.

Sooooo... One good idea here would be to reliably identify unrealistic beliefs which help Parkinson's insteaad of helping me, and then change that belief in to one which helps me by abating these public "symptoms".

Further, if my working model of social interaction is in fact accurate, accuracy is not the same as utility. (Especially, I suspect, for people comng to terms with nasty diseases.) So it could be good to identify sober sensible beliefs and give them a playful edge.


OK. How?

I need a cup of tea. More soon!