Parkinson’s and Depression: My Perspective

It should be obvious from my blog posts that my husband’s Parkinson’s Disease is not a death sentence. It is a “shit-this-sucks!” sentence. The disease has slowed down Chris’s ability to move and, perhaps, to think.

But it is not a stopping or a slowing down of the love he feels from and to and with other human beings.

Chris was diagnosed with Parkinson’s Disease about 12 years ago. His first symptom was stiffness in one arm. It didn’t swing much when he walked. He seemed to have an ever-so-slight drag in his step. More symptoms, such as a mask-like visage and stooped posture, have appeared since the time of his diagnosis. The years have not been easy.

Chris still thinks he got a better deal with a Parkinson’s diagnosis than a diagnosis of A.L.S. or some other fast-acting kind of cancer. He thinks Parkinson’s is not the worst disease.

Like Robin Williams, Chris is (and was) an extraordinarily talented comic and dramatic actor, conversationalist, and, yes, humanitarian. Chris is not acting that much anymore. He’s winning awards for his translations of Chekhov. He’s working on writing projects and directing plays. (He’s still a pretty good conversationalist and humanitarian.)

More importantly, he continues to excel at loving his children and his family. That is essential.

Now, about depression.

This is tough to talk about. Chris was briefly on anti-depressants (Lexapro, I think) for a malaise or depression that may have appeared around the same time as his Parkinson’s. He felt that the pills did not help. He felt that it was just one more damn pill to take. He has to take a lot every single day to keep his neurons firing.

The neurologist did not push these pills. He addressed my complaints about Chris’s symptoms by suggesting that they fit the criteria of apathy, not depression. And apathy, Dr. Ford said, is more annoying to the people living with the apathetic person than to the person who has the apathy. (And there was a bit of joking that I, as the complaining party, was the one who needed the antidepressants. Not the identified patient. But I declined.)

endgame
Chris and his friend Dan are making a documentary about their life in the theater and with the disease of Parkinson’s http://www.theendgameproject.com/

Apathy, turns out, is not an uncommon side effect of Parkinson’s.

From my point of view (and I have encouraged Chris to write from his perspective), depression, apathy, and Parkinson’s Disease – these diseases do, in fact, totally suck. They deplete the quality of life. Because Parkinson’s is a chronic and progressive disease, the symptoms continue to worsen. The disease and its symptoms require a person to constantly fight inertia or apathy. Or depression.

And for some, perhaps Robin Williams, who carried a compounding of diseases, the heavy weight of the battle was too much to carry. (I am not judging. I am writing from my own point of view. I know that we — every single one of us — is fighting his or her own battles. I cannot judge. Only love.)

From my experience, the part of a human being that is capable of giving and receiving love does not seem to be affected by Parkinson’s Disease. Perhaps, one’s capacity for love is what makes us human. And life worth fighting for. (But, again, it may not be enough.) Is love, in fact, what makes life worth living?

Just for today. One day at a time.

When all else – body, mind — fails, perhaps, we should celebrate when love remains.

Don’t let fear win

So some cowards want me to be afraid. But I’m not going to do it. I’m not going to take up their fear. I’m going to keep loving people. I’m going to keep loving strangers even. Just because some idiots want me to be afraid, doesn’t mean that I have to. If fear is contagious, then so is kindness and hope. Sometimes hope is a harder mountain to climb, but I like a challenge.

I know it’s natural to catch the contagion of fear. It’s human. I may feel the fear but I won’t let it poison me.

I’ve been here before. After 9/11, I felt the collective fear. At that time, I’d wake in the morning and wonder if it was all a bad dream. Or I’d lay there and just wish that years would pass quickly so that the tragedy would be only a mild ache instead of a a pervasive pain.

And yesterday, I felt that poisoning pain again.

Still. I’m not buying fear. Instead, I’m buying the instinctive hope of the people who rushed to help. I’m buying the hugs and calls of loved ones checking in on each other.

I will always remember the line, blocks and blocks long, of people who wanted to donate blood to Red Cross after 9/11. Millions more people wanted to help than hurt one another.

Healing, like creating, is hard work. It takes a minute to destroy and years to rebuild. Still, I’d rather be in the business of rebuilding: lives, loves, hope.

Living with someone who’s chronically ill, I live with fear and worry. Parkinson’s Disease has challenged my husband, affected his posture, his walking and more. But I’m not going to let Parkinson’s win either. I’m not going to let a fairly inevitable trajectory of decline ruin my hope for him or for my family. Not today. I have hope today that from the ashes come some sort of new life and some inevitable spring.

I am going to hug my darlings close, write, teach, try to make my small corner of the world a little better than I found it. That’s what I’m doing today. And then tomorrow, I’m going to get up and do it all over again.

Because fear doesn’t win. Love wins.

In times of stress, I know I have to:

  • Connect with friends and family more
  • Work out more
  • Do more self care
  • Eat and sleep well

How do you cope?

at Harvard
Last month the kids and I visited Cambridge and Boston.