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.

How’s Parkinson’s? It’s fine.

heart in the sand
My niece Isabelle made this heart in the sand at the beach on Lake Champlain.

People often ask me how my husband is. I hesitate to answer. I try to gauge why they are asking.

Are they worried about him? Are they wondering how I am coping with his Parkinson’s Disease? Are they being polite and maybe don’t really want to know? If I stay too long on my answer, will I be perceived as whining or ungrateful? If I answer the question flippantly, am I in denial?

There are many gifts of love that our relationship has bestowed: mainly, the three awesome kids. And also people ask, How are the kids managing? To answer that, I usually say, “They’re great. They should probably be in counseling (as should we all), but we are all overscheduled and actually, we’re fine.”

Is it okay for me, a spouse of member with a chronic illness to say, “Fine?” I don’t know how much to open up. I mostly express gratitude for my husband’s positive attitude. I am grateful that he works out through the JCC Parkinson’s Program several times a week. He also goes to the chiropractor several times a week. He leans to one side a lot. He has other physical limitations. The disease bestows pscyho-social consequences which can be difficult for our family. He falls asleep a lot. There are other behavioral aspects, tied to the medication or disease or odd sleep habits.

The question is valid: how is he? My answer is also valid: I don’t know.

My husband has a progressive illness. His disease is progressing. He was diagnosed nine years ago. He is still amazingly capable of many daily tasks of living. And yet, there are many tasks that have fallen by the wayside.

I don’t always want to talk or write about it. I want to say (and people may want to hear), “Fine. He is fine. We are fine. Now, how are you? How’s your family?”

The truth is, if you answer me that you are not fine, that you have struggles too, and that life’s not always easy or what you bargained for, it’s okay with me. It’s okay if you are not always grateful.

In fact, admitting the struggle, and aiming for a semblance of resilience, somehow makes me feel better and makes me feel less alone. Because by asking me, How’s he doing? I think you know for our family, the disease is not always fine, easy, or inspiring. But it’s fine, one day at a time. It’s fine.

Driving with Parkinson’s Disease

On the first day of vacay, just come back from the beach, sandy and relaxed, I got Chris’s phone call with the bad news.

After I drove myself and the kids to our flight out of JFK, Chris took the driver’s seat. About five minutes later, he rear-ended a car. It was on the ramp from the airport to the highway (the Long Island Expressway?). He had been fiddling with the radio and didn’t see the car stopped at the red light in front of him.

The airbags inflated. No one was hurt. Our car was totaled. Chris told me, “My driving days may be limited.”

That night after I got that call, I didn’t sleep well. It didn’t ruin my vacation. It just felt like a signpost on the unhappy road of the progress of Chris’s Parkinson’s Disease. (He’s had PD nine years now.) Parkinson’s is a steady decline.

I have not enjoyed driving with Chris for years. Lately, he could hardly drive a city block without me clutching the dashboard or pressing my foot on a phantom break. I tried to bite my tongue, but often blurted out, “Look out!”

So, when we were together in the car, I always drove, especially with the kids in the car.

This is tough stuff. But I’m glad I didn’t have to tell him, point-blank, “I think your driving sucks.” How do tell someone that? It feels terrible. Yet, it would feel even worse if there had been a serious accident and I’d have to apologize to some stranger, knowing as I did, that his driving sucked. Maybe a small fender-bender is a blessing in disguise.

When you live with someone who is chronically ill, you have to pick your battles. You have to witness a decline. And you often don’t want to speak your truth.

You have to take over the driving. Sometimes it’d be nice to doze in the passenger seat and trust that the driver’s doing just fine. That doesn’t happen when you’re married to someone with Parkinson’s. At least, it doesn’t happen for me.

He can drive other things, but he can’t drive the family car. For that matter, neither can I. Because we don’t have one any more.

Enhanced by Zemanta