Dawn May returns almost a year after her last guest post to update us on her progress and highlight the uncertainties of living with Parkinson's. While her grandson, Luca now lives in Tanzania with his parents, Dawn is already planning a trip to see him.
Dawn May
Gran interrupted: one year on
Posted on: Thu 26-Feb-15 15:53:57
(15 comments )
'The little grandson who's lit up my darkest days'. Do you remember that Daily Mail feature, following my Gransnet guest blog, for Parkinson's Awareness Week in April last year? I was so positive about my diagnosis and so excited that I had been given a new lease of life with the arrival
of Luca.
A lot has happened since then. That little grandson moved to Tanzania, East Africa in October and, at that point, the light did go out. I know it's unhealthy and obsessive to mourn as I did, but gransnetters will understand. So I restructured my weeks - no more long trips along the M4 from Bristol to London every week, packing and unpacking my suitcase, scouring charity shops for funny bits and bobs to delight and amuse, seeking toys for the next stage, thinking about Luca, our little light and what we would do together the following week.
Monday mornings are now spent, together with two friends without Parkinson's, in a local junior school, listening to Reception class readers. That fills the gap a little, focuses the mind and keeps me in touch with little people. And then we lunch.
Tuesday was the day I used to travel. I have filled it with writing for children and making myself walk around the city explaining and offering, fielding comments such as "Do you know anyone with Parkinson's?" My symptoms are still quite mild and mostly invisible to the casual observer.
I drag my leg a bit when I walk, my left arm doesn't swing naturally, I can hear that my intonation is a little flat and monotonous, my facial expression is less animated than it used to be, I can be a bit unsteady and tend to lean forward - but these people don't know me, or how I used to be, or what the typical signs of Parkinson's are except for the tremor. And for the moment I have no tremor. I am a walking, talking advocate for the Parkinson's UK motto 'Change Attitudes'.
I have ups and downs. There was a meltdown day yesterday, but I am a relentless optimist at heart
But it's not easy being a one-woman show, fielding the questions and absorbing the evident sympathy. I don't feel sorry for myself, but I often take on the other person's fellow-feeling and have to rush off for a weep and to recompose myself.
Wednesdays used to be spent entirely with Luca, so now I do some more writing or 'computer catch-up' with old friends and real-life catch-up where I can. I'm pre-retirement age, 62, and many of my friends are still working. I used to go to the gym, attend Body Balance classes, do a few muscle-strengthening exercises followed by a swim and a rewarding steam and sauna. I've lost the appetite for that.
Thursdays were always choir days, and singing lifts the spirits - except when we sing Autumn Leaves or "I shall rise above…these tribulations" or "Hold on...".
Fridays are now spent preparing little packages to send to Tanzania. Luca loves to receive a funny card and the cards are pinned to his bedroom wall, apparently. I write a few words and he still remembers Nanny Dawn, and shrieks with delight when he hears my voice on Skype, even before the picture appears.
I have ups and downs. There was a meltdown day yesterday, but I am a relentless optimist at heart, as my People's Republic of Stoke's Croft mug constantly reminds me. I shall rise above…
I do worry about the progression of my Parkinson's and whether I shall be able to do all the things I had planned to do. The neurologists optimistically tell us all that medication can control our symptoms for 10 years or so and then…surgery? Maybe a vaccine will have been developed? Drugs which can arrest the progression of the disease? Some of my fellow PwPs haven't lasted the 10 years without other, maybe related, complications kicking in after only three or four years. And the neurologists admit that everyone's symptoms are different. So no one can honestly tell me about me.
In the meantime, we have planned a trip to Tanzania. I am preparing myself for the goodbyes before we have even arrived.
Dawn's children's books, which address the subject of Parkinson's, are available from her website.
You can also download Parkinson's UK's Use Your Head materials for your local junior school and 'up the friendly' as this year's Parkinson's Awareness campaign (7 - 13 April) will be encouraging.
