Families with Parkinson’s Disease

people coverThere they are again. Staring at me as my nails dry at Susie’s Salon on 72nd Street. Michael J. Fox and Tracy Pollan on the cover of People magazine. I wish I didn’t resent their affection for one another and their airbrushed pictures of life with Parkinson’s.

Despite being married to an actor with Parkinson’s, I never felt our Coudal-Jones family and the Pollan-Fox family had all that much in common. They seem to have an ease with the disease. Maybe I am just jealous.

Maybe it’s the money. While Chris and I have done well financially, given that we are artists living in New York, we never had an endless stream of cash for the support of caregivers or chefs or whatever the heck very rich people spend their money on.

I don’t want to feel sorry for myself. For self pity is a hole I could fall into and never climb out of it. (Or to paraphrase Cheryl Strayed, ‘self pity is a street that you don’t want to park on.’) Let’s face it, Jones and Fox, like all people with Parkinson’s, have had different trajectories with the disease.

I feel compelled to emphasize the positive after reading this article (or any time really). Chris is going strong after his diagnosis 15 or 16 years ago. However, he is definitely slowing down. This makes me sad. There are times when he gets stuck and cannot move. Times when he shakes and cannot stop. There are times that he drools or hums incessantly. And God help me, I find some of these major physical shifts so disheartening. I am more impatient than Tracy Pollan. I try to stay positive.

The other thing I resent and again, God I wish I did not resent this, is the way that Tracy Pollan gave up her career. According to the recent article, Pollan was the bright one, the steady and hard working actor while Fox was the goofball. Why did she give up her work? Oh, to raise the children. Right. Right.

Well, I raised the children and I worked too. Sometimes, several jobs. And don’t get me wrong, I have always loved my work. My work has given me a purpose and a value, not to mention tuition money for the kids. Is it my feminism or my work ethic or simply my jealousy that wishes that Pollan would’ve been a film producer or continued to do her acting thing, too? She seems to have been a professional caregiver. (Not that there’s anything wrong with that.) Her work was unpaid, but likely, she continued to work hard. It’s hard work to make caregiving look this easy.

But back to my story. It does not have to synch and jibe with any other wife who has a husband with Parkinson’s. I do not have to be on the cover of People. I just have to be me. And Chris can be Chris. And our kids can be who they are. Likewise, the Pollan-Fox fam can be themselves. We all deal with it in our ways. And the one-day-at-a-time way of dealing with life never fails. Letting go of comparing ourselves with others also seems failproof. So I will let it go and find a way to gratitude.

Just one last wish: that for once, someone famous who is struggling with a chronic illness like Parkinson’s, would say is, “It ain’t always easy.” That’s it. I don’t need their family money or their love for one another (okay, well, maybe a little). And I must pause for a minute to admit here that I do appreciate their quest for a cure. They work hard on that. And they have leveraged their celebrity for a good — no, a great — cause.

Every so often, though, I long to hear, “We have struggled with this.” Okay, then give it a beat and continue, “But we’re still here. We’re still trying to make our best lives. We’re still going to work. We’re still trying to love one another and be loved.” Because, no one is perfect — not enough the smiling couple on the cover of the magazine — but we are all trying. And every family has its struggles and its stories. And every story could go deeper and everyone edits their lives for the sake of word count, print space or how they appear on social media.

Let me forgive Michael and Tracy a little and acknowledge, on behalf of all families with a chronic illness like Parkinson’s, “It ain’t always easy.” But thank you for continuing to show up.

Be real. Be loving. Be patient.

Self-pity is a dead-end road. You make the choice to drive down it. It’s up to you to decide to stay parked there or to turn around and drive out.

— Cheryl Strayed
Advertisements

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.

Everything’s Fine

Putting this spin on my life is exhausting. I was thinking about this as I scanned the Michael J. Fox article and looked at his photo on the cover of Good Housekeeping when getting my nails done yesterday.

Sometimes it’s not fine. Sometimes I want to go, “Bad deal. Need a do over. Not happy. Nope. Not working out here.”

I feel pressure — from Michael J. Fox? — to make the difficult seem easy and the abnormal seem normal. So what if my husband has Parkinson’s Disease? I should just grin and bear it (as Tracy Pollan seems to do. You don’t hear her saying, “It’s tough living with this dude who has Parkinson’s Disease.”)

Look, Michael J. Fox is an amazing person doing amazing stuff but not every person with Parkinson’s can perform at his level. Perhaps Fox’s nobility and engagement in life (and his more abundant resources of physical therapy and money and access?) make me and other families with Parkinson’s feel a failure. Sometimes, the disease actually kicks your butt and you are not happy and smiling and ready for the cover shot. You are not always looking up.

Occasionally someone will say to me, “I don’t know how you do it. He would drive me crazy.” And for that I say, “Thank you!” Because the people who say, “He looks great. Can’t even tell there’s anything wrong.” make me feel bad, like I shouldn’t notice his crazy behavior or at times embarrassing demeanor. And to those of you who are right now saying in your head, ‘Mary Beth, it’s worse for him.’ Yes, you’re  right. And I know that. And I’m sorry and I feel sad about that. I try for compassion on a daily, hourly, momentary basis. But this is my blog and my truth.

How positive should I be? How much is my positive attitude denial? How optimistic can any caregiver be? How encouraging should we be when faced with a disease in the family? And can we acknowledge in all honesty that times can be difficult?

And of course times can be great. And I look for and find joy. I try to follow my own rules to live by and find a deeper meaning to my life.

I do have a lot of gratitude for the people in my life, especially for my husband. That doesn’t mean that I don’t have a lot of frustration too. It’s a dance of honesty, encouragement and denial. And to all of this I say to Michael J. Fox’s smiling face on the cover of the magazine, “Everything’s fine, except when its’ not. I’m always looking up, except at times, when I look down. And life is made of moments of happiness and sadness; health and illness. It’s all part of the fabric of this life.”