Tag: Parkinson

Parkinson’s and Depression: My Perspective

Published on by mbcoudal3 Comments

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.

Wanted: Help

Published on by mbcoudal11 Comments

I do not like asking for help. At last week’s lecture on teen boys, Rosalind Wiseman said getting help is a lifelong skill, I agreed, intellectually.

I am the driver who does not like asking for directions. In fact, I am the sole long-distance driver in my family. Chris’s Parkinson’s Disease — or his meds — have compromised his ability to drive. My son does not yet have his permit. We don’t own a car any more. But I am the family driver, metaphorically too.

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At the Yacht Club with Lindsay a few weeks ago. We were toasting out new rules for living.

In 2009, on Lindsay’s birthday, we made up 7 rules for living on the back of a paper napkin while drinking champagne at the Yacht Club. This year we did it again, but had to finish up over coffee the next morning at the Inn. Lindsay Pontius and I made up seven new rules for living. And I will blog about these rules in the coming weeks.

In the last round of rules, my number one rule was Pile on the People. Which I then changed to Pile on the Useful People. Because, at some point, I felt that I was helping more than I was helped by helpful babysitters, caregivers, friends.

For example, I remember hiring a professional babysitter when Hayden was a tot. She took Hayden to the playground, while I stayed home and folded laundry. I loved the playground. I hated the laundry.

Luckily, at that time, I had a therapist, April Feldman, who helped me see the error in this equation. Do the fun stuff. Farm out the chores, like the laundry.

Because of Chris’s Parkinson’s, everyone says to me (and I say to myself) “Get help!” But piling on more people (for me) is often piling on more work. I am exceedingly generous, even to the point of bankruptcy.

This may have to do with my white (and wife) guilt for needing to hire caregivers at all. Caregivers are often people of color. I dont’ want anyone to think that I am better or believe I am better than they are. We are all equal.

The typewriter on the counter at the inn in Westport. So charming.
The typewriter on the counter at the inn in Westport. So charming.

So what can I do?

  1. Care about the helpers
  2. Go to the park
  3. Farm out the tasks I don’t like
  4. Get help
  5. See that asking for help requires practice.

I wrote this at the 475 Riverside Drive ecumenical library’s first and third Wednesday of every month writing group a couple of weeks ago.

The post was inspired by today’s Daily Prompt. The task was to grab any book, open anywhere, go to the 10th word. I grabbed Melissa Gilbert’s Prairie Tale: A Memoir. My word was “wanted.” As in, Wanted: Help.

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Don’t let fear win

Published on by mbcoudal6 Comments

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.

In the Slow Lane

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When Chris was diagnosed with Parkinson’s Disease nearly ten years ago, more than one family member said, “Now you’ll slow down.”

I thought the same thing. And I thought this again as I left my full time work almost five months ago. I will relax more, volunteer more, work out more, write more. I will do all of these things and I will slow down.

Um, not so much.

As my husband slows down, I feel inclined to twirl in my life twice as fast.

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Last week my daughter and I went to New Jersey for a camp reunion. This was the view that late afternoon.

I know I overdo. One day last week, I left the house at 7:45 am and got home at 9:30 pm. This was the fourth day in a row with these kind of hours. I had so much to do!!!

On any given day, I like experiencing a variety of settings — the after school office, spinning class, lunch with a girlfriend, free wifi at the local cafe, teaching, subway to SoHo, a meeting about my short comedy film, happy hour.

The only time I am in the slow lane is when I run. My goal is always to run a 13-minute mile.

Having a spouse with a chronic illness has made me want to get out there and interact with the world more, because, at times, the sadness of the disease’s progression simply brings me down and I cannot stay there.

Yet as lively as I want my outside world to be, I want my inside home to be a safe harbor and a cozy nest. This mama bird wants to fly back home with a mouth full of worms. I want to chill in front of the TV with my chicks.

And I want to do it now because I know my chicks are going to start to fly away soon.

How’s Parkinson’s? It’s fine.

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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.