Written by Heather Kennedy
Just before waking, I am free.
For a few heartbeats and a single inhale, I experience wholeness, floating effortlessly in the fragile shelter between dreams. The alarm buzzes, reaching its crescendo while my brain and hands argue over basic instructions: turn off alarm, and get out of bed.
This is the best-case scenario, since sleep has become increasingly rare. My day hasn’t started, but my body is already feeling encaged by an incurable, progressive brain disease. The moment triggers trauma, and the familiar anxiety surrounding my to-do list tightens my chest. Random life losses and personal failures jump enthusiastically on the bed while I wrestle from tangled sheets.
How will I make breakfast for the kids when I can barely move?
I’ve entered a veritable dark night of the soul, before my first sip of coffee.
It’s nearly impossible to discuss Parkinson’s without mentioning the co-conspirator Demon called depression and the pervasive Witch called anxiety. As if living with a degenerative disease isn’t enough!
Having Parkinson’s means facing a constant stream of loss and chemical changes that impact the brain’s ability to produce and deliver dopamine, the precious elixir controlling our pleasure-reward and movement centers. As veterans of Parkinson’s will attest, we are forced to endure the unpredictable side effects of these unwelcome guests, as they dismantle our health and threaten our relationships. Feelings of depression and anxiety are among the most common — and least discussed — symptoms of our disease.
In time, I’ve learned to fight the Demon and the Witch and to win, even if the victories are small.
As I sip coffee, I remind myself that my challenges do not define me. It’s easy to become despondent, longing for my former level of function when I could sprint, hurdle, dance, create images and play music with little effort. Compassion, empathy and humor are strengthened in the humility of constant loss.
If my experience sounds familiar, know that you, too, have choices and the power to fight depression and anxiety:
- Exercise. It’s your most powerful ally! Add fitness challenges to your daily routine; even a few stretches can help create energy.
- Embrace joy. What inspires you? Perhaps a creative pursuit or visiting a friend? Whatever brings you joy, make it non-negotiable.
- Love. As you give, you’ll receive tenfold.
- Accept and act. Confront anxiety rather than hiding it. Drag scary monsters into the light, and offer them a spot of tea. Once you name your fears, they won’t seem so terrifying.
- Don’t believe everything you think. Try meditation to understand and observe your mind. Soon, you will invite thoughts to pass through, releasing the anxiety-inducing illusion of control.
- Serve. We can’t save the world, but we can do small things for others that make a difference and lift our spirits in the process.
- Engage with the community. Sharing resources and communicating changing needs is key! Online support groups and links to blogs, vlogs or research publications, along with organizations like the Davis Phinney Foundation, can help you live well. Take control of your health management beyond the annual hour you spend with an M.D.
If you suffer with depression or anxiety (or both) in silence, the non-motor symptoms will only gain traction. The degeneration and slowness we experience is isolating when the outside world seems to be gathering momentum.
Emotional symptoms of Parkinson’s only exacerbate the isolation.
If we can learn to accept depression or anxiety as just another symptom without stigma or shame, if we can resist the impulse to hide, we can preserve our birthright of joy and personal freedom. There is a vibrant (and vocal!) community of people with Parkinson’s waiting to share your burden.
Treat the emotional symptoms of Parkinson’s as you would a bully, by facing the Demon and the Witch with intention, knowing that you are more than your diagnosis.
What else can we do?
For starters, I’m getting myself a new alarm clock, maybe something with violin music.
Heather Kennedy studied Photography, Psychology and Philosophy of Religion at RIT, with post-grad courses at Cornell, and is most at home among the Redwoods of Northern California where she lives with her children and a dog named Augie Moe. She was diagnosed with Parkinson’s in 2011 and writes for www.kathleenkiddo.com, a blog for people living with chronic pain and disease. Heather teaches Parkinson’s Boot Camp and dance and sings with a few local bands.
Thank you Heather Kennedy. Thank you for fighting this disease. The commentary was believable and honest. It has spurred me on and that not only helps me, it helps my wife. I don’t know what I would do if it wasn’t for her. Heather exposed the dark side and that needs to be done. This disease robs all of us but the thing that gets me is that all of us are here and then gone so who is to say that the loss of our strength and power in our older age cannot be rectified somewhat and put to use for ourselves. I have seen and met those worse off than most of us with Parkinsons and they are wonderful.
When is a diagnosis of Parkinson’s wonderful news? When after 10 years of being told “it’s all in your head” you find out it kind of is! Just knowing your symptoms have a name can be a relief. Now 3 years later and DBS surgery under my belt, I am grateful to know the demons I’ve been fighting are real, have a face and I finally have a target to aim at. Some days that makes all the difference.
Rebecca, what a great perspective on diagnosis. Here’s to having a target to aim at in your journey to living well!
I like your spirit.
I also wake with some anxiety. Must be common with PD.
What I do is just say to myself the thoughts are just a harmless manifestation of our nervous imbalance brought on by PD. Its distressing but not dangerous.
Then I either get up and visit the john and maybe take a half c/l and go back to bed with a laugh.
I know all to well what depression is as I had it before PD. Im pretty free of it now thanks to my steadfast use of Dr. Abraham Low method of restoring and maintaining our nervous health through will training. No demons just plan old weak nerves.
Thanks for sharing how you manage your depression, John. You may want to read this article to see if exercise can help ease the anxiety you mentioned. Hope it helps!
Thank you for the reminder not to believe everything I think. My first two years after PD diagnosis I got consistently better because I had a holistic program of interventions that worked for me. I was amazed that I had no depression since it had been part of my life for over 50 years. Now I’ve hit a wall physically and there’s that old depression dragging anxiety on it’s coattails, or maybe it’s the other way around. Your suggestions are mostly things that work for me, too. The one thing I’d add to your list is to embrace music in whatever way you can. It isn’t constant in my life because I don’t want it to just be background noise, but I have found three sessions a day helpful whether I’m listening, attempting to make it, or moving to it. Anything creative stimulates the brain, but for me music is the most powerful.
Such wonderful advice, Mary, thank you! It is very important to keep you mind engaged while you participate in all activities. Mindfulness during an exercise will challenge your brain to stay focused, to be present, and you will ultimately enjoy yourself more! We are glad you’ve found such a resonance with music!
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