We’ve both talked before in these blogs about the sense of isolation that is entirely of our making and comes from living in a country (Holland) where we don’t speak the language. That is to say, this is not something that has ever bothered us before since we know plenty of people who speak excellent English, but now that Parkinson’s is part of the mix, I for one would wish that I spoke Dutch well enough to go to some kind of support group. But instead of meeting others in the same situation face to face, I use the net – other people’s blogs, for instance. Trouble is that I don’t (yet?) feel comfortable responding to some blogger I have never met in the public sphere of blog comments. So, instead of posting to the author, why don’t I just tell you about this post I read the other day which set me thinking.
It was in the one blog I have been able to find that is written by another wife of a fairly-early-onset Parkinsonian, so many of the posts speak about concerns I have too – such as asking how other people will understand what is wrong with Jon when only I see him early in the mornings before his first dose of L-dopa has kicked in, and wondering when I get annoyed whether I am actually upset with some essential Jon-ness or with an aspect of Parkinson’s that isn't under his control, and fretting about how the disease will affect our future in practical, financial and emotional terms. For more, the address is http://lifewithshaky.blogspot.com/
Anyway, among all the good stuff was one post I didn’t agree with, where the blogger listed the various things she sacrifices to (her husband with) Parkinson’s:
See, I don’t think I’m sacrificing one little bit to Parkinson’s. “Sacrifice” implies an active decision to give something up for some higher purpose, personal or general – deciding to sacrifice your career prospects to have many children, or choosing to sacrifice your own comfort to perform good deeds for others. But I have had no choice in the matter whatsoever: I love Jon, not by choice but by some primal serendipity, so I share my life with him, and so anything that happens to him also happens to me. I have made no conscious sacrifices to PD, but I certainly have suffered losses to the disease. I have lost peace of mind, lost the innocent belief that good things will last, lost a lot of time and a lot of sleep, lost a range of previously possible futures, and I have regularly lost my temper in frustration and self-pity. (But really, what is that against everything Jon has lost?)I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my emotional and spiritual well being, etc.
Inevitable losses come to us all and one just has to live with them as a condition of life, like being short-sighted or too old for a career in football. But I refuse to make sacrifices to Parkinson’s. It’s all words, of course, but I think what struck me was that (to me at least) someone who sacrifices is somehow inherently admirable, and that doesn’t feel right. If anything we do is to be admired, let it be how we cope rather than what we may be thought to sacrifice. Nor do we hanker to be pitied, although I admit that does somehow feel more appropriate.
Okay, enough about that now. There was a TV programme recently in the US that is being recommended by lots of PD blogs, called My Father, My Brother and Me because the journalist behind it comes from a family with these three PD sufferers. Well worth watching, I thought, as it is serious and informative, and also gives an inkling of what life with PD can be like. The full programme can be seen at http://www.pbs.org/wgbh/pages/frontline/parkinsons/
One of the points discussed is research into how exercise might affect the development of the disease. Jon and I aren’t great at sticking to any kind of exercise regime – I mean, we both kept smoking long after anyone with any sense had stopped, so it’s not as if we’re into looking after ourselves. However, we got ourselves a basic Wii console some months ago and have both been playing regularly, and last week we added a Wii Fit foot board. It is the greatest fun! We both have addictive personalities, so there has been some fighting over the controls. Jon is not normally very competitive – or, at least, he normally only competes against himself and the memory of his dad – but I am, so Jon gets a very satisfying reaction out of me when he beats me. I try a bit of everything, but Jon has quickly specialized in slalom skiing where he is way ahead of me.
So the Wii gives both of us a bit of much-needed exercise (while the outdoors remains uninvitingly Februarish), and because most of the games are about quick reactions and controlling your balance, I think it might actually be pretty appropriate for Parkinson’s. At least, that’s our excuse.
