My best mate at university was a highly suspicious lady. Her father worked in intelligence. She had achieved a very creditable fluency in Russian. She was (anathema!) a practicing Christian. She was acting as nanny for the family of an influential diplomat in the US embassy in Moscow. As such she merited a greater degree of attention from the Russian intelligence service than your average nanny. Such attention, though flattering, had its drawbacks, one of which was that items of personal property at times went "missing".
During her stay her address book went "missing" in this way. She never misplaced items. If it wasn't where she expected it to be, it had been moved. There was a well-known method of recovering such items. You lamented aloud the loss: "I need my address book. It will be my Godmother's birthday in three weeks, I must write her a card; she will be terribly hurt if her birthday comes and I appear to have forgotten it. You see, she has no child of her own.."
Then you waited. At times this did not work, particularly if you were only a nanny, even a rather Interesting nanny. But no cause for despair. The next step was to borrow a more influential wall. Thus she approacher her employer, "Please sir, may I borrow your wall?", and repeated her lament.
The address book returned.
Please sir, may I borrow your wall?
I wonder at times whether my Parkinson's is a late addition to ongoing struggles to keep in motion. I allow for the possibility that Parkinson's is the newcomer in an already complicated plot. But even allowing for that, even if there were only the ghost of a chance that PD is the culprit, I think people should be studying me, because the quality of my life has been going up rather than down for the last nine years. I think that those who are trying to help people with Parkinson's should listen. I have a lot to say on the subject. There may be something to be learned from my experiences which could help others.
I have a very diligent guardian angel. It nudged me in helpful directions long before I got any diagnosis. In my opinion, my guardian angel is nothing short of inspired. In these ways it guided me, make of it what you will.
For a start, two people I respected suggested I cut wheat and dairy out of my life. I was desperate enough to try it. Two weeks later I walked. Without sticks. For the first time in 18 months.
Second, once walking, there was the obsession about running. It had to be an obsession; no rational motivation could have generated the will to keep focussed on running through the frustrating years when three days of running would be followed by a week back on sticks.
Third, there was the happenstance of a bad case of plantar fasciitis coinciding with a time when the illness was obviously active. My lovely running GP prescribed celebrex for the pf, and, simultaneous with improvement of the pf, the fog, the twitchiness, the headache dissolved. A useful lesson learnt.
Fourth, I can't quite remember how I got involved with Pilates, but I did. My lovely Pilates teacher (also a runner) was very much into the Franklin method, and the role of the much underrated psoas muscles. She taught us their function in our lives and how to access them deliberately, how to stretch and strengthen them. (What muscles do you think are contracted to produce the characteristic PD stance? Given contracted psoas, is any form of ambulation other than the parkinsonian shuffle even possible?) I began to think analytically about running, about moving, and to consider which muscles needed more strength, more flexibility, and how to achieve it. I'm still learning. Lots. There seems to be a whole chain of "anti-Parkinson's" muscles. Twitch one, they all respond to counter the stoop.
Fifth there is the matter of sports massage. No feel good stuff this. I am not sure I am going to call my massage practitioner lovely. He isn't a runner, although he is a champion race-walker. I will at some point tell you how I got into this, because it is an entertaining tale. Particularly when preparing for a running event, I see him on a regular basis. I scream. I shout. I swear. Tears start in my eyes, I bite my lip, I sweat all over. But I stand tall and run freely.
Sixth, I suppose there is also the matter of the viola and the work. I will never know how much worse cognitive function would be if I didn't play, if I didn't struggle on a daily basis to impose discipline on the chaos of ideas that bounce around my brain.
Even if mine is an isolated and idiosyncratic case, and others will not get similar benefit, people need to hear this. There are things to try. People who get the diagnosis and get the pills should also get the advice, the training, the massage, the education, and the viola lessons, if it takes their fancy. It takes time I suppose, and time is money, and money there is none. But honest, during my time on sticks I would have sold my ears for the pleasure of running. If money could have bought it, I'd have paid. If the lovely NHS can no longer provide such costly measures as advice, education and training, then at a minimum we need to find some way to get the message across that there are things that could be tried. It might cost effort, it might cost money, but we don't have to sit back and wait for pills and immobility and a cure that might come too late for us. It might not "work" but I'd far rather try all sorts of things than wait patiently (ha ha, get the pun) for the men in white to fix it please. Maybe others would too.
I got a lot of questions too, but one rant at a time. I will wait, and see what ears this wall might have.
