Dear earlier me,
Our theme for this Parkinson's Awareness Month is Parkinson's disease (PD) is "more than a tremor". Indeed it is, though you didn't know that at the time you were diagnosed. You didn't know anything about this complicated disease, so when your psychiatrist suggested you might have it, you scoffed. He knew that the depression you were being knocked around by (remember that?) could have its roots in the depletion of brain chemicals such as dopamine and serotonin, substances that you had barely heard of. You also had a slight tremor. So, off to your first consultation with a neurologist, who confirmed your (my) shrink's diagnosis. You (I) rebelled against the idea, but little good did that do. You had it and we were on our way.
So, what is Parkinson's? It’s more than a tremor, yes, but the tremor part is real and debilitating – simple tasks become burdensome: tying your shoe laces, flossing your teeth, putting on a shirt, doing up buttons or zippers, raising a fork to your mouth. Cooking, which you loved to do, gets harder and slower – spilling the sauce, mangling a carrot you are trying to peel. These deficits are your future, though it seems a bit cruel to lay this awareness on you now. You have a couple of years before you'll notice the slippage.
PD is also a threat to mental wellbeing: anxiety and depression, those two monsters, tend to visit most patients with PD at some point. For you and me, as for many of us, that's where it all started – before any physical symptoms. Going along with this, expect apathy and a certain flatness of voice, of facial expression, of cognitive function. Also, of course, slowness of gait, of movement in general. These are all there waiting for you, though you might escape some of them. But wait a minute – you are me, so you won't escape them.
What else, you might ask? Well, Parkinson's is also physical weakness – tiredness, wobbliness, trouble with balance, proneness to falling, and dyskinesia. Luckily, you'll not have to struggle with this last one, at least so far. And then there's the effects of your disability on those around you, especially your life partner, who has a life of her own and God knows you don't want her to be saddled with taking care of you. Of course she will be helpful in a thousand ways. But it's a rough ride for her as well. And what about those grandkids, whom you can no longer take on the kinds of excursions you'd like to (canoeing, skiing, hiking)? You will even find, as weakness encroaches, that you are unable to pick up your six month old grandson for fear of dropping him.
Is there an upside to PD? Well, in your case, yes. It can build a sense of community, of connecting with others in the same boat; it can at times be funny if viewed from an ironic perspective; it is mitigated by vigorous exercise, as we were told by our neurologist right at the very beginning (remember?). That admonition was easy to follow since you and I have always been physically active. Skiing and kayaking will have to go but there's still space and energy for boxing, walking, swimming, yoga, even cycling (carefully!). Ultimately, PD is a part of life and has to be acknowledged. You may not like it, but it's yours to keep. So live with it as best you can.
Your old friend,
Tony