It’s getting hard to talk…

The National Center for Voice and Speech states that 75 – 90% of people with Parkinson’s Disease will have speech and voice disorders at some point in the course of their disease (www.ncvs.org). The poet Hafiz describes this in a typically cheerful way in his poem Basically Useless: 

They were happier, all the mouths I saw in a certain city.
For they all woke up one day and mostly forgot what they were for besides…just kissing.
And in between their rounds of sweet romantic play, they – all those mouths,
Appeared to have few lingering impulses, except for a little food.
That is – talking, everyone came to realize, was basically useless.

Talking may or may not be basically useless but this poem is attractive to me in part because over the last year it’s been getting harder and harder for me to talk and swallow. The problem is often made worse by Deep Brain Stimulation surgery, a relatively common procedure where electrodes are placed in the brain and small electrical impulses are used to counteract the nerve signals that cause tremor and rigidity. The problem with DBS is that the nerves which form the target area for effectively treating these symptoms are very close to the nerves that control speech and swallowing. I had this surgery about a year and a half ago; it’s been very helpful but I’ve become very aware of the tradeoffs: if I adjust the signal to maximize tremor suppression I will also be essentially unable to speak or swallow at all. So I opt for a balance, and I’m happy with the results. But the impact on my voice was undeniable. No free lunch, right? 

But DBS aside I’m also noticing a clear trend towards a weaker voice: my voice is softer and gets tired easily, and this is certainly getting worse with time. I do some exercises, which help, but it’s sometimes easier not to talk at all. For a person like me who usually has to talk things out to figure out what I think this is a disconcerting change.

As usual the issue mostly comes down to awareness: I can speak normally for a while if I keep a portion of my attention on the mechanics of speech and swallowing. The importance of conscious intention is a theme running throughout these blog posts, and my neurologists tell me that it’s correct: PD is mostly about things which are typically done without thought or awareness becoming more and more dependent on conscious attention. From a Buddhist point of view this sounds sort of interesting, and even slightly virtuous. The problem is that you can’t turn it off.