jmgoyder

Anthony’s dysarthria is getting worse. Dysarthria is difficulty in speaking and, in Parkinson’s disease, is caused by the vocal muscles not working properly. Except for occasional unwhispered flashes of eloquence (usually in response to visitors or staff talking directly to him and waiting for an answer), his voice now is mostly a whisper.

This means that over a period of hours, Ants and I may only speak a few sentences and that it is mostly me doing the talking. Sometimes I have to put my ear right next to his mouth to hear what he is whispering and often I still won’t understand and he will shake his head in resigned frustration.

At other times, Ants may form meaningful words into sentences that to me are indecipherable. As a result my mind-reading abilities are improving and usually I will be able to figure out what he is saying. Sometimes, of course, the sentences do make sense syntactically, but not semantically, for example when he asks me to move the calves outside his window.

It may be a long way off, or it may be soon, but eventually Ants may not be able to speak at all so I am preparing myself for that possibility by writing down the things he does say as well as the things that I say that trigger his half-smile. I am a bit scared though because his facial expression is mostly pretty frozen (another PD thing) so it may be hard to ‘read’ him.

The contrast between this whispering Anthony and the loud, bellowing, laughing person he used to be is acute but I refuse to allow this to be heartbreaking, and I refuse to revert to the fug of despair I felt so long ago that I hardly remember its blah. There is nothing heroic about this newfound attitude; it’s a matter of pragmatism and survival I guess.

There was a period of time way back when Anthony’s inability to smile spontaneously, coupled with my down-in-the-dumpness, made my visits to him sad and difficult and I would come home in tears. But now it is so wonderful because I look forward to seeing Ants, almost like the teenager-in-love I used to be, and evoking this new half-smile from him easily now, and often, is fantastic fun!

That half-smile highlights our days and Anthony’s whispered “I love you, Jules” makes me feel like the luckiest woman in the world. I so admire his resilience, acceptance and unsadness in the face of this horrible disease. His fortitude and courage continues to amaze me. He is not just my hero; he is a hero of Parkinson’s disease and I salute him.

And every whisper is a weapon against the impending silence.