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My favorite song lyric is from “Box Full of Letters” by Wilco: “I just can’t find the time to write my mind the way I want it to read”.

This sums up my feeling about writing.  I want to write, in fact I do in drips and splatters.  I just can’t ever finish anything that I start, or polish anything into the shine I think it should have.

I feel like that about blogging too.  Conflicted.  I WANT to blog but I don’t know if I really have anything interesting to say.  I start more posts than I ever publish.

I’m listening to The Baseball Project as I write and thinking about this weekend’s round of College World Series regionals.  I love baseball.  I love college baseball.  I wish I knew enough about baseball to write about it but I’m more of a causal fan.  Oh, I know my stats and positions.  I know most of the major league players and some of the better minor league.  But that’s just part of knowing the game, enjoying how it’s played.

I love music the same way.  That excitement of fining a new band before most anyone else you know.  The quite snobbery of KNOWING that I probably listen to better music than you do…whoever you are.  The great friends I have met through music at stale little bars and in people’s front yards.  I’d like to write about that too.  I just don’t actually know enough about music to do so.  I know what I like and I could probably tell you why I like it, sort of.

Writing about my Parkinson’s disease is even more difficult.  It’s personal.   It affects my emotions as well as my body.  Sometimes I feel like I have no control of anything anymore.  My entire right side of my body is in constant revolt, I cry sometimes for little or no reason because I’m low on dopamine, my house is a mess, my tires need to be rotated, my cane in starting to really hurt my hand because I rest so much of my weight on it when I walk, and it ticks me off that I can’t paint my bedroom.  I feel like any time I post about PD I either sound whinny or ultra upbeat like a cheer-leader.  Neither really relates to how I feel.  Honestly, I am getting to the point where I don’t remember how it felt to walk without a limp.  Oddly, that’s a comfort.

I wish I was a writer.   I guess that comes from being a reader.  Instead I’ll settle for the occasional blog post.

I recently told someone that I don’t write on my bad days.  Looking back over my blog, I realized that I do write occasionally on the bad days I just don’t explain what is going on.

So, I’m having a few bad days.

The reasons are many and varied.  I’m having trouble sleeping which makes me tired which agitates my symptoms.  I’m sick of the financial problems I’ve had for the past year and even though I can see the proverbial light at the end of the tunnel I’M SICK OF BEING BROKE ALL THE TIME!  I cannot seem to shake this head cold that I have had for three weeks.  I’m cranky and short tempered all the time.  I snap at my husband and mom all of the time.  I want someone else to be responsible for a while, to take care of dinner and cleaning the house and laundry and grocery shopping and holiday arrangements while I go away and lay on a beach with a pile of books for a while.

The thing is, I would imagine that most people have days or weeks just like this.  The difference for me is these normal life frustrations build up on top of the reality of living with Parkinson’s.  I told my friend that “I tend to not post at all on bad days and avoid telling the uglier truths about how HARD everything is. Simple things that, four or five years ago I didn’t even think about when I did them now take major concentration and effort. Nothing is ever easy anymore. I am beginning to forget what easy feels like.”

I’ll get over it.  I’m not a glass-half-empty person.  The weather is supposed to be sunny and warm all weekend and there is baseball and hockey to watch.  I might sit outside and listen to music.  Maybe I’ll grill something and buy some wine.

But I guess I should clean the house and start some laundry first…

When I was twenty-one I went to the now defunct Parkinson’s Action Network conference with my mom.   She had recently been diagnosed with PD, the second generation in our family as her maternal aunt also had had PD.  The conference was held in Washington D.C. and my second cousin’s and great-uncle Paul were there because on the final night they were going to show a video of great-aunt Ginny.

I was twelve the last time my family drove out to California, for my great-grandmother’s (Nana) ninety birthday.

My great aunt was diagnosed in the late sixties or early seventies, when she was around forty-seven years old.  She was one of the first to use Sinemet, the same medication I take today.  She had an pallidtomy and swore off any more brain surgery after.  She was a fighter, a survivor.  She lived with PD for thirty plus years and my memories of her were always of an energetic, capable, laughing person.

I guess I was about twenty when Ginny died.

That evening in D.C. they showed the video of Ginny in her final months.  I was NOT prepared for what I saw.

I actually fled the conference in tears, unable to rectify the fragile elderly woman almost unable to speak or eat on her own with the charismatic, laughing woman I remembered.  I wandered the parks by the Congressional building (most likely dangerous and stupid but I survived) in the June dusk and cried.

I realize now that my great-aunt was a great survivor.  She lived for over thirty years after her diagnosis and for most of it managed to stay active, stay involved, stay happy.  She never lost her sense of humor (which was immense) even near the end of her life.  I remember my mom talking to her on the phone and laughing, always laughing.

I’d like to be the same.

 

 

This is me today, a day when my balance was so bad I almost fell at Wal-Mart; a day when my hand put up a serious fight before I managed to get my bra hooked; a day when doing the housework that needs to be one will just have to wait.

I hear people say that they are not their disease.  The more I think about it the more I think that might be the wrong way to think about things.

I have Parkinson’s disease.

It’s a part of me, it colors every decision I make and determines every movement I do or do not make.  I AM, partially, my Parkinson’s.  But I am much more than just a disease.  More than a limp or a tremor or a cane.

I am still a wife and a sister and a daughter and a friend an a coworker.  I still love music and reading and macaroni and cheese.  Maybe I cannot ride a bike but I can Wii bowl and am game to walk anywhere if you are willing to go a bit slower that normal.  Who I was six years ago, pre-diagnosis, is still who I am now, essentially.  I just take more medication now and move at a slower pace.

I know the exact date of my diagnoses, July 24, 2006.  I suspect all PD and MS patients are the same.  It’s the day you are told that your life will never be the same again.  It’s the day that you come, eventually, to accept as the day you added to the list of who or what you are.  I am a Parkinson’s patient.  I have Parkinson’s disease.  It IS part of who I am now.

I know that for the newly diagnosed there is a tendency to deny, to search for another answer.  Despair can swallow you whole.  I think that it is important to remember that you are still you.  You still love the same people, like the same ice cream, live in the same house, drive the same car.  You are still you, just with a new addition.

So I accept that I am Parkinson’s disease.  I hope that I can be a face for my disease that proves that the scary doesn’t have to be so scary.  I hope that someone out there might read this and think “she’s right, I am still me”.  I hope that other’s will think that their disease does not have to define who they are but be a part of the whole person.

 

I was always a talker.  I was the kind of person who would talk to complete strangers while waiting in line.  I was in the theater, my voice was made for projecting without strain.  I was an excellent public speaker, no amount of people bothered me.  If pressed into it, I was even willing to sing publicly despite never being the best singer in my family.

Then I was diagnosed with Parkinson’s disease.

PD patients often build up too much saliva which causes choking,  drooling, and slurring speech.  I also, when tired or stressed, tend to stutter which with along with the slurring makes me sound like a drunk at worst and an idiot at best.

So I slowly have began to talk less and less in the past five years.  Social situations have become slightly unnerving.  People I don’t know or don’t know very well tend to be intimidating and flustering.  Those times that I manage to get all my words out clearly I’m aware that the people I’m talking to are not really listening to me, instead they are just wondering about my cane and I begin to think about leaving or at least hiding.

I never, ever, talk on the phone unless I have too.  I’d rather text message.

I even hide from Facebook.  Sometimes other people’s common-place problems just infuriate me.  I reach a point where I just don’t care anymore if you have a cold or can’t afford to go on vacation this year or are getting your third divorce.  I have better problems.

PD is caused by the brain not producing enough dopamine.  Dopamine is the chemical is your brain that makes to feel happy.  PD patients all end up on anti-depressants to combat the loss of the dopamine but I am still resisting.  I am already on enough medication for a 34 year old.  I just need to take breaks every once in a while.

So, with that being said…I’m back.

 

I have never been overly brave.  I was never one to run with scissors or  dive into the shallow end.  I’ve never been one to speed in my car or run stoplights late at night.  And now, post PD diagnosis, I am even lees likely to try anything new or daring.  My world is scary enough since some days even walking is an adventure, why try to go out of my way to see more scary?

That being said, I allowed my youngest sister to talk me into cutting my hair.  All of it.  It is the bravest thing I have done in years.  I went from this:

To this:

Yeah, I know.  Completely insane, right?  I love it too!  What a surprise.  Maybe I’ll try skydiving next…

People stare, I don’t let it bother me very often.   I’m thirty-four and walk with a cane and rather strange, clomping limp.  I also have a handicap license plate on my car.  So people stare.  Adult people.  People who should, if ever taught any manner, know it’s rude to stare.

Old people, I find, are the worst.  Little kids I don’t mind, they are just naturally curious.

The amazing thing is when total strangers ask, “what happened to your leg?”.  Complete and total stranger at, say, Wal-Mart or Target.  When I’m in a good mood I might explain:

me: I have Parkinson’s disease

total stranger: (shocked) But you’re too young!

Which is why I don’t feel like offering the explanation very often.  Sometimes people I do know, like at the clinic I work at, will ask and it still is the same conversation, as if I have no idea how young I am to have PD.

Some days I just don’t feel like offering up my personal information to strangers.  When they ask, “what happened to your knee/leg/foot?”, I reply, “Nothing.”  It’s the truth, there is actually nothing wrong with my knee/leg/foot, the problem is my brain.

shot_1294792732462.jpgI’ve gotten to the point where I’m so used to people watching me that I don’t even notice it.  I think it bothers people I’m with more than it bothers me.  You can’t fight all the time.  You have to learn to ignore and evade the questions you don’t want to answer.  Some days I’m up for being a smiling, friendly accessible example of early-onset PD, some days I want everyone to leave me alone and find another nosy-ass hobby.

My cat, Simon, agrees.  He says feed ’em fish heads.

A friends of mine wrote this recently,

“Multiple sclerosis and Parkinson’s disease are the California forest fires of neurological diseases. They don’t start with an explosion, they have their own sense of time and direction, but sure enough, plenty gets destroyed by the time they get put under control.”

I’d like to put that on a bumper sticker on my car because in two sentences he managed to explain more about my disease than I have in two plus years of blogging.  He doesn’t have MS or PD, he’s just a guy with friends who happen have both.  Maybe I should just have cards printed up and hand them out to those who ask about my leg.  Maybe they won’t understand…maybe I don’t care today.

shot_1294254613542.jpg

 

I don’t talk a lot about my PD symptoms.  How do you talk on a semi-public forum about the days it’s difficult to dress yourself or that you can’t walk anymore unless you’re wearing shoes that lace up?  Good-bye flip-flops and high heels, hello Converse.  I really MISS flip-flops!

Parkinson’s is a disease of physical instability and mental tricks.  I’ve had to learn to write left-handed because my tremors in my right hand.  I walk with a rather pronounced limp and use a cane.  I can no longer ride an escalator.  PD causes “freezing”, which is just what it sounds like.  The movement on escalators  causes me to freeze, my body completely incapable of movement.  Cracks in the sidewalk do the same on my bad days.  That space between the floor and the elevator car?  Yup, that can freeze me too.

And before you say it’s all in my head, I know that already and so do PD and MS patients everywhere.  That’s just the thing about having Parkinson’s or Multiple Sclerosis, it’s literally all in the head.  It’s a degenerative neurological disease.

A woman I know was recently diagnosed with MS.  I already really liked her, she’s smart and funny and likes good music but now we have this commonality, this terrible similarity.

I know that MS has some basic differences from PD but I also know that essentially we are in the same basic club.  I wish I had brilliant words to uplift her and assure her that life, though different, would be what she wanted to make of it still.  I wish I could show her that even if you move a bit slower, walk with a cane, can’t always get you hand to cooperate, that you haven’t really changed.   I know all this to be true in the past four years.  I’m still me just a little slower.

What I can do is invite her to a rock show.  There should be more girls with canes at rock shows.

 

So living in central Arkansas, we don’t get a lot of snow and a white Christmas is a thing of fairy tales.  I grew up in Denver, a city almost certain to have a blanket of freshly fallen snow to test run brand new boots, mittens, sleds, skis, and ice skates.  It was not ideal if you received roller-skates or a bicycle for Christmas,  you could only  sit and admire your new wheels until the snow melted in mid April.  Since moving to Conway twenty years ago, we have had one Christmas it sleeted, one a massive ice storm knocked out the power, and one truly white Christmas.

I point this out because there is an app that allows it to snow on my blog for the next two weeks.  It’s probably the closest thing I’m going to get to actual snow.   Fake snow falling on my blog.  We all take what we are able to get sometimes.

On the general topic of things falling, I tried to steps backwards down the two steps after closing the side door Sunday and fell.  I almost caught myself on the glass-fitted screen door but slid to the concrete stairs and smacked my elbow.  Said elbow is now scraped and bruised and painful but fine.

The problem is I no longer have no reverse.  I haven’t for a year or so.  PD has striped me of running and going backwards.  Most other things I can still do if I try hard enough or if I have enough patience that day.  The thing is, I rarely fall and it’s ever rarer that I get hurt.  I think the thing with my elbow hurt my pride more than anything.

Forecast for Conway for Christmas day is 43 and sunny.  Better than ice…

 

Today I didn’t want to eat but I was hungry.

Today I can’t see the end.

Today I don’t want to go home and clean the bathroom (but I probably will).

Today I don’t feel the holiday spirit, I just don’t.

Today I hate my cane and my stupid medication so I just didn’t take any of it.  Of course, I’ll pay for that tomorrow.

Today I just don’t like any of you.

Today I wish I could have gone for a hike all by myself down to the waterfall at Petite Jean but I can never do that again.

Today I’m not feeling sorry for myself, I’m just in a bad mood.

Today I want angry rock music.

Tomorrow will most likely be better.

Quotes-

"And music will save your life. It's religion. Treat it that way." -Bob Lefsetz
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."A poet who reads his verse in public may have other nasty habits." -Lazarus Long from Robert Heinlein's "Time Enough For Love"

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