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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.

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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…

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.

 

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.

Today I was unspeakably rude to a patient.  Ordinarily I deal with personal questions by complete strangers with some patience but today I was apparently out of that particular virtue.  Now, to preface the story I should admit that the woman had annoyed me when she first arrived at my desk and refused to take a seat while I finished with another patient.  Then, when I did get to her I had to fill out some papers for her.  Let me make this clear-

I DO NOT WRITE

My handwriting, when I am forced to do it is barely legible and I write painfully slow in order to maintain any control over my tremor at all.  I type EVERYTHING these days, and if it can’t be typed it probably isn’t very important.  But, I took the papers from this woman and began the hand-cramping process of filling out five or six blanks.

She watches me the whole time I’m writing and when I hand her the completed form she askes, “Is the something wrong with your hand or something?”

I just look up at her and reply, “I have Parkinson’s disease.”

She sort of blanches and says, “I didn’t mean that to sound mean.”

I just turned away and started working on something else until she finally walked away.

And now, at home tonight, I just feel tired and sad.  I hate that my medical condition is something people think that they have the right to comment on.  I hate the I am forced to give out personal information to complete strangers just because they think it’s okay to be rude.  I also hate that I get so annoyed sometimes when people do ask.  I’m a study in contradictions tonight.

Clomp, clomp, clomp, clomp…

That is my new sound.  I have developed a slight limp since November.  Clomp..clomp..

It is like I cannot set my right foot down in a rolling motion any more, instead it hits flat like I’m stomping around all the time but just with one foot. 

It trips me if I try to run.  Not that I run all that often, but if I ever really needed to I would be a goner.  I’ll be rolling around on the floor when one of the patients at the clinic finally goes postal while everyone else is running for the stairs. 

The snappishness is back too.  Apparently the happiness caused by Christmas lights and cookies fades quickly once you pack away the decorations and are left with bare-branched trees and brown grass.  I don’t feel sad, exactly, but I get agitated and snappish at the smallest provocation.  My poor family.  I don’t want to go on medication, so I’m going to try doing some research first, see if there is any solution that is more organic.

I bought a computer so I don’t have to use Chris’ laptop at home anymore.  That may mean I blog more regularly, but what I’m really hoping to do is finally give writing a real effort.  Just to see what I can do.

I put up my tree (and then put it back up after the cats knocked it over), I decorated the shubs with lights, I hung my Happy Holidays sign in my front door so where is the snow already?

I was honestly afraid I would not feel up to Christmas this year. Since September I have struggled with high levels of apathy and fatigue. Speaking, for several months, turned into this halting, stuttering ordeal that had me avoiding people altogether. Then, slowly over the past month, I’ve returned to myself. My speach is still irregular if I’m tired or stressed, but I don’t feel like hiding anymore. Some people feel depressed at the holidays but aparently Christmas lights and jingle bells are like an elixor of mental health for me.

So today, just three weeks before Christmas, and I’m returning to my neglected blog. I will try and post some photos of the decorations and the cats napping under the tree as soon as I figure out this new wordpress site.

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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