Tag: Parkinson’s Disease

3 Simple Rules

Published on by mbcoudal3 Comments

When I used to do stand up, I would tell myself 3 things right before I went on stage:

1. Be yourself

2. Have fun

3. It’s important

And I am trying to tell myself these same 3 rules at the start of every day.

I did not sleep well last night. One of the darlings came into bed with me at around 2. She’s nearly as big as an adult so she woke me. We have no air conditioning. It was  hot. I tossed and turned. Then I  moved to my daughter’s now-empty bed. I’d heard an antidote to insomnia is changing rooms.

As I walked in the hall, I heard the television was still on. My husband stays up way too late into the night, sometimes until 3 or 4. Then of course he falls asleep in the early evening hours when you’re talking to him (blame the Parkinson’s). Hearing the television just made me feel all sad and jumbled — my life, my restless night, my work. And I couldn’t wait until morning so I could dump all my thoughts, worries, dreams, into my journal.

1. Be yourself. Because there is a unique point of view based on a unique life’s journey. And for whatever reason, this is my journey. This is mine.

2. Have fun. Because I seriously believe that we are put on this earth to give and experience joy. The goal in life is to be happy, joyous, and free.

3. It’s important. Because I can easily dismiss my point of view, or expect that I am less than. But what I have to say is important.

I did fall asleep in my daughter’s bed and woke to write all this in my journal.

Everyone Drives Me Crazy

Published on by mbcoudal1 Comment

It could be the heat today. But everyone is so annoying! At work my colleagues expect all my work to be done last week. At home my kids yell at me to help them with homework. Genius takes time, my friends. You can’t expect a unicorn to work like a mule. Maybe I am just crabby.

I blame it on my husband’s Parkinson’s Disease. I blame everything on his PD.

And there is one other thing — one huge contribution to today’s overall sucky-ness. (If you know me, you know I’m rarely in this sucky camp. I’m usually in the glass-is-half-full camp. I stay happy because I have made up and followed my 7 Rules to Happiness and they usually work! But not today.)

Today’s pity party reached a crescendo when after racing my bike to get to one of my darling’s appointments at the orthodontist, I discovered I’d have  to cough up $295 dollars to replace each of my darling’s two lost retainers. That’s right. A set of lost retainers will set me back $590.

After the trip to the orthodontist I consoled myselt that when I got home, at least the house would be clean. See, Chris is extremely messy (blame the PD) (and admittedly, I’m no Felix Unger myself), but Wednesday nights are usually the one night when I don’t have to kick the house into some semblance of order when I get home from work. Because A., the cleaning person, works magic in our apartment on Wednesdays.

I was thinking ‘Tonite, the house will be clean and I will make myself some jewelry.’ I’d biked to the craft store and bought some beads. I like to be crafty. It’s calming, fun, productive. But A. couldn’t make it today. So I spent the night, cooking, cleaning, being generally pissed off. I didn’t make any jewelry. I just helped with homework and cleaned the kitchen.

Okay, I can’t end this post without admitting to a few highlights of my day too: Laying on the grass at Barnard with Liz at lunchtime and reading the kids Deenie  by Judy Blume for our Mother-Daughter book club before they went to sleep.

Tomorrow’s another day. I doubt it will suck. I will try to be grateful and I will try to be happy.

Pile on People and Activities

Published on by mbcoudal1 Comment

My number one rule is pile on people. I like to pile on activities as well as people. It is my way of coping. I like to say yes to every invitation and expand on every good idea offered — lessons I learned from performing improv.

Calder's Red Mobile, creative commons

Families are like fine art mobiles — when one member swings one way, the others move another — compensating, balancing, attempting to maintain equilibrium. With Chris’s increased slowness, I take on more. Like the arm on a mobile, I swing faster. I fly one way, while other pieces bounced along. Life swings every one. With Chris away with siblings in the Adirondacks this weekend, I did more. And I liked it.

When he’s gone, I depend more on friends.

Here was my Sunday. I got up early.

  • journaled
  • blogged
  • cabbed to pick up Charlotte from a sleep over
  • brunched at friends’ — lovely — bagels, lox, whitefish
  • dropped Hayden at church
  • napped for 20 minutes
  • got the car
  • picked up H. from church
  • dropped one child off at Randall’s Island, Icahn Stadium
  • drove to Cold Spring to get Kate from her sleep over
  • walked around with friends and K. in Cold Spring
  • watched the people fishing
  • chatted, picnicked by the harbor with friends
  • ate yogurt at a yummy yogurt place
  • picked up K.’s things from Garrison
  • drove K. and myself back to Randall’s Island
  • cheered H. and his team at track and field events
  • drove friends and kids back to city
  • parked the car at a lot
  • made dinner — chicken, rice, broccoli, strawberries
  • helped H. pack for 5-day bike trip
  • cleaned
  • sent myself and the kids to bed at 10:30

In a family, there are tons of ways to cope when a spouse is out of town, sick, or just unable to deliver the goods. People tell me, “You do too much.” Yet I would rather pile on people, activities, work, exercise, kindness than pile on resentment, solitude, inertia.

I’m sure there’s a lesson in how to balance your life based on the image of  a Calder-type mobile. Balance is not part of my vocabulary.

Enthusiasm, passion, friendship, too many activities? That’s the way! Pile it on.

Writing in a Community

Published on by mbcoudal1 Comment

I started a lunchtime writing group. The last time we met we wrote poems on fragments of Anne Sexton’s poetry. (Brilliant assignment, Tiffany!)

I cried a little as I wrote my piece. When it came my turn to read the poem out loud, I alerted the group, “I may cry when I read this. Don’t worry about me. Don’t hand me tissues. I am okay. I’m just having feelings.”

I read my piece out loud and two-thirds of the way in, I began sobbing. Literally sobbing, sniveling, gasping-for-breath crying. I don’t know about you, but I don’t like to sob — especially in the middle of the workday and in front of coworkers. That is the time I like to joke around about Toddlers & Tiaras or take a walk in Riverside Park.

But there were things bubbling up in me. A sadness around the shifts and losses in my marriage, due to my husband’s Parkinson’s Disease.

Here’s the story: I cope really well. I work out. I write. I share my feelings. I lean on my friends. I feel alone. I love my kids. I love my job. I love my communities. But, at times, I feel and I am alone. And I am sad.

There was something healing about writing about and reading this piece to a writing group — a community of real people in real time and in a real place. We wrote together and then we listened to one another read.

Our meeting is simple. We rotate leaders. The leader picks a topic and then we write for 20 minutes. Then we go around and read what we’ve written. We have written about other things too — our childhoods and our rituals.

There is an alchemy to being a part of a community of real writers. The other day I wrote on my other blog What is Community? https://mbcoudal.wordpress.com/2011/05/07/what-is-community/

It is hard work, passion and diversity. This lunch time writing group has and is all that. We meet again tomorrow at 12:30. Join us.

Resilience

Published on by mbcoudal2 Comments

My father had a motto, which I think he got from Woody Allen, “Showing up in uniform dressed to play is 99 percent of the game.” Sometimes finding the uniform is tough. But usually, I’m good to go. I show up. And that’s the best I can do. Like showing up to write in one of my blogs every day.

Every new year I vow to get organized, save money, and work out more. And in 2011, I promised myself I’d blog for 66 days and I’m almost there.

I remember a Physics lesson from college (although it was the only class where I got a D). A body in motion stays in motion. And so I stay in motion. I just keep playing, showing up to my life wearing my uniform. I keep going.

For me the tough part of being married to someone with Parkinson’s Disease is that there are times when he is not ready to play. He can’t find his uniform. He’s slow to the game. (I hesitate to ever complain one iota about his disease because yes, I know, it’s tough, yes, worse on him or anyone with a chronic or serious condition. And, hey, what am I complaining about?) But sometimes showing up means telling it like it is. And that’s the way it is tonight.

But tomorrow I’ll get up early. I’ll write in my journal. I’ll get dressed in my work clothes, my uniform. I’ll get ready to play. And I’ll help anyone that needs help. And I’ll try to remember to thank God that I’m on a team.

Kids at Camp=Freedom

Published on by mbcoudal1 Comment

Every time I travel for work (or pleasure) I’ve left my darlings with my darling husband (DH). My DH has PD (Parkinson’s Disease) and so I’ve never felt a clear conscience about traveling. I worry. I have worries that they’ll be late to school — they are. I have worries that the house will be a mess when I return — it is. I have worries that they’ll stay up too late — they do.

So the idea of sending the kids to camp — of having people in charge of my kids who are not chronically ill or chronically worried — is a huge sigh of relief.

And it’s not like I’m sending them off to work the fields. These places are situated on beautiful lakes, with Arts n Crafts, horses, swimming, camp-outs, possibly S’Mores!

I have one child to drop off tomorrow. With the first two, I have felt like I’m shedding clothing on a hot day. Or dropping ballast from my hot-air balloon. Just briefly, I am traveling lighter. I am less worried, and yet, slightly untethered. The kids are my compass, their needs are always pointing my way.

They’ll only be gone a few weeks. In that time, I intend to stay late at work, work on my novel, http://gettingmyessayspublished.wordpress.com/ , work out, http://runningaground.wordpress.com/ , throw a party, paint the dining room, get my financial house in order, get to a museum,  http://mybeautifulnewyork.wordpress.com/. If I can sneak in some Arts n Crafts time myself, I’ll be happy.

The Seder and the Little Things

Published on by mbcoudalLeave a comment

Granted, there are a few parts of the Passover Seder that could be considered boring, but Chris was asleep during the Plagues part! That’s good stuff. Frogs! Lice! Pestilence! Boils! etc.

It’s times like these I try to focus on my 7 rules. I reminded myself of Rule #2 — Escape through Literature. I buried my nose in the Seder guidebook, the Haggadah.

I’ve been more worried about Chris’s Parkinson’s lately. Like last night at the neighbor’s Seder, Chris’s chronic illness was visible, difficult, and anti-social. And it persisted. After the party, instead of getting the kids ready for bed, he sat in front of the computer and fixated on his on-line bridge game. I know I should be grateful for all he does and is. And mostly, I am. But still. I laid awake at night worried. And then I moved on to worry about the little things.

Like the possibility that the mouse we caught on Sunday was not the only mouse in the house. Honestly, my worry about the mouse in the kitchen surpassed my worry about Chris’s Parkinson’s decline. It’s the little things that slay me. That feel insurmountable as I lay awake in the middle of the night.

You somehow learn to live with cancer or chronic illness, but the mouse situation? That’s the last straw! I’m ready to toss it all in and ask for a redo. This must be why something as small as lice made it to the Top 10 list of unbearable plagues that smite mankind in Egypt. The Ancient God of the Seder knew it was the little things that get you, not the big ones. Still, it doesn’t make it any easier.

Health Care for Caregivers

Published on by mbcoudal5 Comments

Just checked out the www.1010challenge.org

Everyone has a health care story. This is the first one I read.

As a United Methodist Minister and Health care worker I affirm the church’s position and pledge my support on this issue. As a small membership pastor I do not have health insurance because the congregation I serve cannot afford the rates of the church sponsored plan. Since my health care job is on a “as needed” basis (prn) I do not qualify for health insurance. – Allen Noah Converse, TX

I do not know Allen Noah. But I believe he should have health care. I do not know a lot of people, but I believe we should all have health care. 

I have a place in my heart for people who care for other people – pastors, parents, caregivers, teachers, and doctors. I believe they especially need care. Just because someone does not have a traditional job that offers health care, that person should not be penalized or denied.

Is a small-town pastor less important than a big-time CEO? I don’t think so. As a follower of Jesus, I want to love, care for the least, the lost, the lonely. I want the above-mentioned pastor to have health care. I want the parent who opted out of the workforce to care for her infant to have health care.

I believe a country pastor or a stay-at-home parent is as valuable to our nation – even more so – than a corporate mogul who carries health insurance for his or her family.

I know several parents at my girls’ NYC public school, who have health care for their children, but not for themselves. They cannot afford it. They are parents who have jobs, but those jobs do not offer health care. And even if they did not have jobs, they should still have health care. I worry about them, I worry what would happen if they required major medical care.

God know, my family has needed major medical coverage over the last several years. My 12-year old has had three heart procedures. My husband had radiation for cancer and care for his Parkinson’s Disease. I have absolutely no doubt these procedures, treatments and doctors’ visits would have bankrupted us, had we no health insurance. Surely, we would be a million dollars in debt.

As we in the United States debate how to provide universal health care, I suggest we remember parents and pastors. Let’s not forget people who care for other people. Their work is priceless and too many of them are not insured.

“Mom, you’re just too good for me.”

Published on by mbcoudalLeave a comment

I swear to God my son just said that to me on the tennis court. I swear to God. This is the happiest day of my life. The best thing anyone has ever said to me.

Okay, okay, I’m a little competitive. I take a lot of (too much?) joy in beating people at tennis. I know I should be a bigger person. I should hit the ball gently to a 12-year old. I should hold back. But, God help me, I love to win.

The game was kind of crazy because we played Australian – or is it Canadian – doubles. The two of us against Chris, but Chris’s adding was getting a little funky. It was deuce and he’d say it was 15-30 – that kind of thing. He wanted to sit out. He dozed off on the bench, watching us play. Well, he wasn’t watching. He was dozing.

Hayden and I kept playing. The game was 3 to 0 in my favor. And he said that ill-fated line. “Mom, you’re just too good for me.” Oh God. I can’t tell you how good that felt. I asked him if he minded if we put that on my gravestone. I felt the endorphin rush.

Then he came back. It was 3 to 3. And it was game, set, match point; we were playing to 4 games.

Hayden served. It was deuce, add in, deuce, add out.  It was deuce, add out, then he double-faulted. I hate when anyone double faults, but in this case, I took the victory. It tasted sweet. I’m just too good.

Rattlesnake Mountain

Published on by mbcoudalLeave a comment

We hiked Rattlesnake.

Maybe a fourth of the way up, Charlotte discovered a shedded snake skin stuck to the trunk of a toppled tree. Hayden peeled it up, like a nametag off a suit jacket. He made us all touch it. So yuck.

We arrived at the parking pull-off around noon and I think it was about 3:25 when we returned. Or else it was 3:52. I’m fairly beat now. And will likely feel it tomorrow.

In terms of endorphins, I think I hit them about 20 minutes into the hike on the way down. I was by myself. I felt a rush of well being as I watched my kids holding hands in a tunnel of light ahead of me. You know the kind of yellow light in the middle of green trees on a late summer day. Very nice. Very Hansel and Gretel. Heartwarming.

But then a stick and leaves were thrown. The girls broke into a fight. Catherine threw some kind of handful of seeds or leaves at Charlotte, to make it look like it was raining. And Charlotte took offense, said something nasty like “You touch yourself!” And Catherine said, “I was only making you look pretty.” And Charlotte said, “Without that stuff falling on me, you’re saying I”m not pretty?” in that kind of head-wagging way.

The endorphin buzz was lost somewhere in there.

But that’s what I get, hiking with 9-year old twins, a 12 year old, a 5 year old (Izzy, Kristen’s daughter), a 30-something year old, (Ben, Kristen’s boyfriend) and the husband with Parkinson’s.

I worried that the climb would be too difficult for Chris and Izy. But Izzy was only carried briefly on Ben’s shoulders.

Chris managed pretty well. Unlike our hike up Coon Mountain last week, when he was nearly last at the end of the hike, Chris, this time,  finished towards the front. With the help of a walking stick. And grit.