Do not go gently

It has been cold here, with ice and snow, so I went for a walk. Have I mentioned that I have a slight limp? Well, my right leg tends to drag, which in normal conditions is fairly unpleasant as it sets off a grating sensation in my whole right side. But walking on snow, I find that I glide smoothly over the surface. It was nice, that. Not nice enough to move to the Arctic circle for, but nice enough for me to go for another walk when I’ve finished this post.

Otherwise, I’ve been doing the three R’s this week: reading, (w)riting and resting, in roughly equal proportions. I am, at last, making progress on my joint writing project, and feeling quite virtuous and perhaps even a little bit fired up.

But it’s the reading that has been the most rewarding this week. Two things in particular. The first is a book about recovering from stroke, My Stroke of Insight by Jill Bolte Taylor, a stroke-stricken brain scientist who knows the subjects literally inside and out and who took 8 years to recover. Parkinson’s patients should probably read the book backwards as we travel in the opposite direction from the author, getting worse and worse. But there are interesting observations in there, also for PD.

Closer to home, Marie stumbled across a blog called Lab Rat’s Desk, written by a woman with one of the PD+ syndromes (the medics can’t decide what to call it). She writes very well indeed, illustrates the text with her own stunning art work, and is a prolific blogger. Somehow I find her blog reassuring. Her body is clearly letting her down very badly (and she apparently used to be a ballerina – one of God’s mean little jokes), and she is not being brave about it. Instead, and utterly reasonably, she complains bitterly and honestly. I wish her well. She represents my future, but the good news is, in her words:

“My life is no picnic. Like most persons with these diseases I cannot sleep, eat, walk, talk well. I have had to repeatedly teach myself toilet-ing to prevent incontinence. I have had the torments of being treated like a child by the well meaning, and the impatience of those unwilling to wait for my considered answers. Sometimes my food has to be liquid, and other times my stomach is a bottomless pit because my broken brain tells me I have to keep eating. I am in constant pain where my neck and face contort from spasms, as do my feet and legs and on bad days my hands also. – it goes on in similar vein, but then comes a but …..
But, it is not the worst disease, not by a long shot. I have had friends die from far more horrible diseases and at much younger ages. Unlike Huntington’s I have my ability to think. Unlike most cancers there are no awful, painful and frightening treatments, which may fail. I have had no body parts amputated. My mother had her breast amputated in her forties and she grieves the loss each and every day. A friend of mine has Scleroderma and has her body slowly turning into virtual stone until her lungs will no longer expand and contract. She is not old, and has not had a normal day with her children as she was ill from the time they were young. Mine is not the worst disease.”

For more, go to http://labratsdesk.wordpress.com/2009/01/

In fact, I have spent quite a bit of time in front of the computer this week, not just reading blogs, but also because I recently got invited to Facebook, which turns out to be a wonderful non-productivity tool. I haven’t amassed many ‘friends’ yet, but among them are people I went to school with who are suddenly crawling out of the woodwork. As it turns out, someone has even posted a picture of me aged 17, playing guitar for the band Simple Harmonic Motion. No, I’m not telling you how to find that... I’ve been uploading some of my own pictures too. It’s kind of fun and its nice to get feedback and to collect new (old) friends. Plus it makes me feel all plugged in and alive to be part of this global cyber-community.