Tag: Parkinson’s Disease

Happy-Go-Lucky? Good enough!

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In the face of worry, I stay perky and productive. Chris does too. We continue to make a contribution — at work and at home. I want, need, and hope that we all stay as positive and productive for as long as possible.

Chris’s work is very meaningful. On the heels of his success translating The Cherry Orchard Off-Broadway and directing Picasso at Lapin Agile in Florida, he is performing in a fabulous production of Taming of the Shrew. He is also making a documentary with his friend Dan about having Parkinson’s as they rehearse for one performance of Beckett’s Endgame. (Checkout The Endgame Project.) We’re going to see the trailer for the documentary on Monday night.

So when people ask me, How is Chris doing? I usually say, “He’s doing great. He’s productive and he’s positive.”

As a family, we are doing great. Or, at least, good enough. And good enough is good enough. Lots of times, we are perky and happy-go-lucky! As I’ve said before, “We get by with a little help from our friends.” And family!

And when we feel sad about having to just get by, that’s okay. We’re human after all.

Driving with Parkinson’s Disease

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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.

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No Good Night Sleep

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Started walking home last night, on Riverside Drive

For two nights in a row I’ve hardly slept at all. Last night started out well. I fell asleep at 10:30. But C. came into my bed at 11:15, calling, “Mom? Mom?” I blew my lid.

I hate yelling, but there I was, yelling, “Are you kidding me? I need a good night’s sleep! Unbelievable! Get back to bed!”

I believe in the future that yelling at children will be looked in the same way we look at hitting children nowadays — a relic of some misguided child-rearing dysfunction.

C. was just being a kid. She was teary. She was probably worried about returning to school after a couple weeks of Christmas vacay. I don’t know what was going on with her, because I didn’t listen. I had no compassion.

At 3 am, after tossing and turning, I tried to express my unhappiness to my husband but he was not as supportive as I needed.  He was watching the movie, Mean Bosses. The crazy-ness of his staying up all night (due to his Parkinson’s) contributed to my sleeplessness and, I believe, contributes to the family sleep dysfunction.

“I need a retreat at a convent,” I told my husband in the middle of the night.

I haven’t been writing much. I’m unhappy. “Maybe I should get on anti-depressants or go back to therapy,” I said.

“I know I should work out.” I tried to walk home last night, but it was too cold and I hopped on the bus when it pulled up beside me.

Happy New Year.

worry is contagious — so is hope

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At our social media mania workshop in Albuquerque yesterday we had an awesome group — a lot of knowledge and a lot of support for each other.

Outside the San Felipe de Neri Church in Albuquerque

When Beth (Buchanan) asked for questions on post-it notes, one participant, S., wrote, “My mom cyber-stalks me…I’m scared to blog-because she’ll read it.”

After the workshop, I looked for S. but didn’t find her. I wanted to chat about her question and reassure her. Then I realized I hadn’t called my mother in a week so I called Mom to tell her how great I’m doing.

But Mom had feedback for me. She’d read my recent post on Getting Help. And I have to admit I put the phone on speaker as she spoke and pushed back my cuticles. She said, “You should get more help. The Michael J. Fox foundation will help you get care for Chris and the kids.” She is always after me to contact the Fox foundation for help.

“Mom, I think it’s true that the Fox foundation is a caring organization,” I said. “But I think their money goes into research and not into hiring home health care for people with Parkinson’s. And, as I mentioned in that blog post, I am getting help for Chris. Although, yes, it’s hard for me.” (Did that sound defensive? Um, yes, a little.)

Mom said she’d seen Michael J. Fox on Letterman or some late night show and that Fox reminded her of my husband. “He is not doing well,” she said.

Hmmmm. Here I am at this wonderful UMAC conference, wanting to brag about how great my presentation went. And I want to be worry-free (and free) from my little family for a few days and now I’m getting worried all over again. And I’m worried about worrying, because what if Mother reads this? If you do, you know I love you and I thank you for having good ideas, concern and love for me! 😉

But here’s the thing — worry is contagious and I don’t want to catch it.

The view from my hotel room. The sun was so bright, I had to look down.

I stopped writing this post this morning to think. I went out to my little patio to look at the sunrise. The sunlight blew me away. The sun is much bigger and brighter and closer in Albuquerque than in New York City. There is something valuable, beautiful and worry-free in a big bright morning sun.

I did find S. after this morning’s session. And S., Beth and I talked about the challenges (and joys?!) of having tech-savvy mothers who read our blogs, tweets or updates and then praise, worry or comment.

I vowed to Beth and S. to be a mother who does not cyberstalk her kids on social media. It may be impossible. Like my own mother, I want to protect, get help for and read them well.

Getting Help

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No one does it alone. No one.

I am terrible at getting help. So bad. I would much rather be the help than the helped. Having a husband with Parkinson’s Disease, I find his ability to help is diminishing. Of course he still pitches in and cooks dinner, but the quality of his work and the time it takes to get things done is very frustrating. For me. I need help.

On the flight home from Florida, I began to compose a letter to some church friends asking for their help with my darlings while I am going to be away for a few days for a worktrip to New Mexico. But then the plane hit turbulence and I put my laptop away. I have not opened that file. A part of me felt ashamed that I needed help.

In a city and a country of rugged individualists, I felt stupid and weak for asking for parenting and family support.

However, a few recent events in my life and in the world have reminded me that human beings need one another. We are social animals who like to live and work in community. It takes a village. We all need help – coping with an ill spouse, raising children, writing a book, organizing a demonstration or running a marathon. Here are some examples:

1. Occupy Wall Street — if you demonstrate alone, you look crazy. If you demonstrate with thousands of other people, you look like you have a cause.

2. NaNoWriMo — even the loneliness of novel writing can be ameliorated by thousands of on-line and real life friends cheering one another on. Creating small daily goals adds up to big accomplishments.

3. My Daughter’s Soccer Team — it’s much more fun to celebrate a win in a group than to win alone.

This weekend I saw this performance art piece at the foot of the High Line. The women were cutting each other's hair.

4. Haircuts — they just look better when someone else does them. In the same way, you can’t set your own broken arm.

5. My Family’s Well Being — I’ve met with a former colleague who started her own eldercare business and is helping us with Chris’s caretaking and I’ve also met with a lawyer to learn about protecting our family assets. These were huge and difficult calls to make and conversations to have. There’s more work to be done, but it’s a start.

Someday I may get back to writing that letter to my church friends to see if anyone wants to watch Charlotte’s soccer game or share a meal or prod the children to homework while I’m away. But I hesitate to finish and send the letter.

What if no one can help? Then I will end up exactly where I am. And it’s not such a bad place to be.

Why I Couldn’t Sleep Last Night

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I tossed and turned, my sheets wrapping around me and my melancholy.

I’ve said it before, Mommy needs a good night’s sleep. And last night it just wasn’t happening.

Here are some reasons:

  • I had worries about getting up early to buy and deliver breakfast to 22 kids at the church lock-in at 7 this morning.
  • I do too much.
  • Chris, my husband, is returning home tomorrow after a couple of weeks of being away. It’s an adjustment.
  • I am worried about the expense and commitment of getting Chris help with daily tasks of living for his Parkinson’s Disease.
  • It’s 9/11 weekend. It’s depressing.
  • I’m not exercising much, because of my foot pain.
  • I’ve focused too much on the kids and establishing their back-to-school routine.
  • My bedroom is too hot; the air conditioner is too loud.
  • I went to a MeetUp last night for writers who perform; had a couple of beers. Felt a little jazzed.
  • I did not write much.
  • I have anxiety about work and the possible downsizing of our agency.

I guess that’s enough. I finished Donald Miller’s Blue Like Jazz yesterday. I so identified with his discovery that we are open to forgive and love other people way more than we accept ourselves. The point of everything, every encounter — even our encounters with ourselves in the middle of the night — is love.

That is, instead of withholding love to change somebody, I poured it on lavishly. I hoped that love would work like a magnet, pulling people from the mire and toward healing.

This is tough. I have to find a way to love and forgive everybody, including myself; I need more help. Some problems can be resolved with more help and more love, and some with healthier behaviors. Here’s how I answer myself on last night’s worries:

  • I had to take one of the girls to the pediatrician's office for her ear infection. This was in the waiting room. My thoughts, like cogs, go round and round.

    You delivered the breakfast.

  • You like being busy. Being busy and happy pays off.
  • You’ll adjust to Chris’s return. You have your own travel plans.
  • Just spend the money to get Chris help.
  • This weekend will pass.
  • Exercise any way. Swim. Bike. Run. Do yoga. Do physical therapy for foot.
  • The kids are doing great.
  • Leave the air conditioner on.
  • Decompress with a book or herbal tea, not a beer.
  • Write more.
  • Let go of the work worries; there’s nothing to be done about them any way.

Writing all this has helped. I need more coffee. Maybe later, I can sneak in a nap. (Or exercise.)

Teaching Children Responsibility

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Six years ago, I borrowed a book from my daughters’ preschool. The book was called Teaching Your Children Responsibility. I don’t remember any advice from the book. All I know is that I never returned the book to the preschool lending library.

I have felt guilty about not returning that book for six years. I try to model responsibility and consistency. Sometimes I model guilt and blame.

For the mess in our apartment I like to blame my husband Chris and his Parkinson’s Disease and my children who have no good excuse. And of course I blame myself because I don’t discipline them enough and I would rather write before work and play tennis after work than clean and do laundry. I would rather go out to Happy Hour with my work peeps than make a family dinner. How often have I said, “Let’s order Chinese food again, kids”?

I may be irresponsible but I am happy. I may be guilty but I am keeping the Cottage, the best Chinese restaurant on the Upper West Side in business.

I may be messy, but I am creative. This is what I tell myself. In our country house there is a magnet on the fridge. It says, “A creative mind is seldom tidy.” So true.

This jibes with my Rule Number 5: Expect the best, love what you get. Even from yourself.

Someday I’ll return that library book. Until then, I’ll try loving myself.

Criticize or praise?

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I am a huge fan of praise. I love telling my colleagues, my kids, my friends, “Hey, great job.”

Last night at an opening night party (yes, I’m cool like that) for a new play, Unnatural Acts, at the Classic Stage Company, I saw Annika Boras, the actress who played Lady MacBeth there. I gushed, “You were so good.” And besides being brilliant — she’s beautiful and nice too! (It’s so great when that all comes together.)

I said, “Wow, great job. Love your work,” to Senator Chuck Schumer a month ago when I saw him at Jones Beach walking the boardwalk. http://mybeautifulnewyork.wordpress.com/2011/05/29/why-was-our-senator-at-the-beach-today/

Just because I love giving praise, doesn’t mean everyone does. Or that everyone should.

I probably don’t receive as much praise as I give to the people in my life, like my spouse — people with Parkinson’s Disease are not known for being effusive. I do praise myself and give myself some positive self-talk. “Wow! MB! You were incredibly productive and creative today!” Yes, I have been known to kiss the mirror. (“You look good, MB!”)

I wonder if I need need more than most in the affirmation department. I may just be cut from a cloth that likes to give and receive kind words, being one of five kids from a slightly (?) dysfunctional family.

You may say, “It’s fine to praise yourself, crazy lady, just don’t over-praise your kids. The way everyone receives a medal, even if they came in last or simply existed.” To you, I say, “What?! What am I supposed to do? Tell them ‘Win next time.’ I love my kids unconditionally. I do try and praise effort most of all, being a fan of hard work. But I tell them all the time that I love them and that they are awesome. So sue me! I overpraise!”

My kids are more brilliant, beautiful, and sweet, even than Lady MacBeth. Not that I’m comparing. (That’s the kiss of death — compare and despair!)

Several business articles lately have backed me up on my penchant for praise. Praise is important in the workplace, actually, more important than criticism.

http://www.inc.com/articles/201106/how-to-fast-forward-your-goals_pagen_3.html  I like the way this article acknowledges that we don’t achieve anything alone; all achievements are the result of collaboration. And we ought to acknowledge our collaborators.

How much praise do we need to hear? And why are we so good at correcting one another rather than praising them? The Harvard Business Review offers some insights: http://blogs.hbr.org/hill-lineback/2011/04/why-does-criticism-seem-more-e.html?cm_mmc=email-_-newsletter-_-management_tip-_-tip062311&referral=00203

This is also what all the strengths-based learning is about. Lead with your strengths. Do what you’re good at it. To find what you’re good at, praise yourself. If that’s too weird, start by praising someone else and work your way back home.

Stronger in the Broken Places

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Chris loves to watch the kids play sports, especially Hayden on the Little League field. He loves to teach them cards.

The Parkinson’s Disease makes some typical Dad things difficult, but he does them any way. He never says, “I can’t.”

He loves to cook, and he is a slow cooker.

His ability to show his love is slow too. He can’t help it.

Can any of us help who we are or what we get? I try to remember this when my husband falls asleep when I’m talking to him or walks away in the middle of a conversation. He leaves a mess worse than Linus in his wake. He refuses to leave his computer chums for real-life friends.

I try to remember who Chris used to be. I try to remember the quick flick of his wrist on the tennis court, the persistent phone calls to place our kids into pre-school, the lover of literature, the smooth dancer at the Broadway show’s after-party. He is still all of these things, but they are slower to show themselves.

I lean on and love other dads too. They might not even know how much I need them — my kids’ uncles, grandpa, friends. I lean on these father figures so my kids get the attention, love, support they need.

Fathering (and parenting) takes a village. Sometimes I feel I should do it all alone. Or I feel that that there is only this one person or one way to be a family. Or I feel I shouldn’t reveal our/my weaknesses.

But we are stronger in our broken places (I think that’s a book title). The shoulder bone Hayden broke when playing baseball is stronger at the point of its break, which happened to be the growth plate.

When we lean on one another, we are stronger. We reinforce the growth plate.

By remembering why we love someone and getting over the frustration of that challenge (if possible), there is an ease and a deep gratitude. And if that doesn’t work, there’s always anti-depressants.

I’d like to write more about this but I have to go and make a Father’s Day breakfast. I have to call my own father and say, Thank you!

Everything’s Fine

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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.”