Coping with Parkinson’s, Warding off Depression

Like many of you, I have spent some time over the last few days thinking about Robin Williams’ death. As someone with Parkinson’s and also an addictive personality, I worry that I may at some point suffer from depression. Somewhere between 50-60% of Parkinson’s patients are diagnosed with depression, and addiction can be a side effect of the treatment. Thus, when I heard Williams had Parkinson’s, I wasn’t surprised. In an odd way, I was almost waiting for it. And here’s why:

Having Parkinson’s Disease sucks.

You are in pain most of the time you are awake, and because insomnia is a side effect of both the illness and the treatment, you are awake a lot more than you want to be. Ordinary tasks once taken for granted become nearly impossible, and you can succumb to impotent rage through the simple act of trying to tie your shoes. You grow tired of constantly dropping and spilling things, of wearing much of what you eat and drink. Walking becomes difficult, and you lose your balance almost without warning. You freeze in place. The medications make you forgetful and confused. You feel child-like and helpless, and you certainly don’t feel attractive or desirable. You lose your confidence, and you become nervous in social situations fearful of how your body and brain will betray you and make you feel foolish. Then you get up the next day and do it all over again.

Medication and treatment are helpful, but only for managing the symptoms, and sometimes side effects are even worse than the symptoms. Combine that with the stress that the illness puts on your closest relationships, it is no wonder some of us succumb to depression.

However, I am not one of those who have, and I intend to stay that way. In spite of all of those difficulties, I have learned some lessons that help. This is my list of how to cope with Parkinson’s. I make no claim to its completeness or universal efficacy. It’s what makes sense to me.

1. Find medical professionals you can trust—including a therapist. You don’t necessarily have to find a therapist who knows a lot about Parkinson’s, but certainly one who is willing to learn. The important thing is that you find one you connect with, and is skilled at getting you to think about what you need to. I would also recommend someone scientifically minded who understands basic neurology. This might not be the job for a sensitive type who’s office reeks of patchouli and likes to talk about damage to your aura.

2. Share with the people in your life, including your colleagues. This is very hard for me, being someone descended from a long line of repressed people who take every significant fact of their life quietly to their grave. I now work in one of the most supportive environments I can imagine, and I have fifty people watching my back. Don’t be afraid to share with strangers, either. I was at a teacher meeting a few months ago and a woman I didn’t know sat down next to me, and my walking stick fell into her lap. I apologized, and for the first time, told a stranger that it was for Parkinson’s. She then revealed that she had Parkinson’s, and also had a walking stick! We remain part of each other’s support network.

3. Find others with the illness. I am not into the support group model, but I have a couple of people in my life who suffer from the illness and are available to talk, email, or message. You may have wonderful people in your life who love you, and excellent medical care, but sometimes a bitch session with someone who knows exactly what you mean can be a tremendous elixir.

4. Make sure someone in your support network is unwilling to tiptoe around you and unafraid to be brutally honest. Many people will listen to you sympathetically, but don’t know what to say, and are sometimes fearful of saying the wrong thing. Find someone—your spouse, a friend, a family member, anyone—who doesn’t give a fuck about that. When you are feeling sorry for yourself, and making helpless excuses, sometimes there is nothing better than a loved one who lets you know in no uncertain terms that your moping is unacceptable. They may not give the reaction you actually want, but they almost always give the reaction you actually need.

5. Celebrate small victories. A couple of years back I started wearing a tie to work. This was a big change for me—I didn’t even wear a tie to my own wedding!—but what it did other than improve my sense of style was give me a chance to start the day with a dexterity challenge. If I got it tied correctly, I started the day with a win. Give yourself other chances for victories—pouring your tea without spilling it, finding the correct button on the remote on the first try. Give yourself permission, though, to fail, as it may not be your day. Be sure to reward yourself—three days of not spilling your tea? You get cake! It may not sound like much, but these little victories can be so good for your mental attitude.

6. Laugh. As much as you can. Don’t be afraid to use humor as a coping mechanism.

She: “Can you hand me a soda?”

Me: “Yes, if you would like it to explode in your face.”

He: “Can you take a photo of us?”

Me: “Sure, if you don’t mind looking like you’re in an earthquake.”

I was at my neurologist’s once waiting for an appointment when I struck up a conversation with another Parkinson’s patient. We ended up laughing our heads off imagining what the Parkinson’s Jenga Competition would look like: the winner stacked three, and it only took him two and half hours! You might make someone uncomfortable with those jokes, but never mind. They’re just going to have to understand it’s important to you. So if you’ve rewarded yourself with cake and then dropped it in your lap, be sure to laugh. But if you feel sad about that, call your brutally honest friend. She’ll laugh, because let’s face it: the irony of that is fucking hilarious.

7. Find a physical activity that works for you. Aside from the obvious benefits, joining activities creates new opportunities for support. Every time I have a new Yoga instructor, I take the time to introduce myself and explain that I have Parkinson’s and what that will look like in class. This conversation always ends with me receiving an expression of kindness and gratitude. I had a massage recently from a Hindu guru who pointed out that “I don’t have Parkinson’s, only my body does.” I have been thinking about that ever since.

If your body has Parkinson’s, I hope some of this resonates with you. If it doesn’t, I hope this gives you some insight into what it’s like. When someone is diagnosed with cancer, one of two things is going to happen: remission or death. With Parkinson’s, there is no cure, but it doesn’t kill you. That’s what makes the illness so hard to cope with, and why coping well is so very important.