Out of Control

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drooling on my pillow
shuffling my feet
choking when i do
and when i don’t eat

shaking out of my control
my jaw, my lips, my face
all of them are quivering
i feel so out of place

i’m shaking on the outside
i’m shaking from within
i’m shaking all over
right out of my skin
 

toes that curl and cramp
fingers that stiffen and bend
is it in my future
to ever feel normal again

stiffness on the left
stiffness on the right
more cramping, more pain
every muscle – so tight

lots and lots
lots and lots of pain
pain masked, pain ignored
pain again and again

grief for things gained
grief for things lost
trying to live each day with joy
no matter what the cost

out of my control
i’m controlled by my brain
sometimes i feel so out of control
that i’ll go completely insane

depression vies for my attention
i push it back in its place
it beckons, mocks, screams my name
but i am not going to run its race

my speech is soft
my speech gets slurred
others often don’t hear and think
i haven’t said a word

mixed up, mixed up
out of my control
it might claim my body
but it will never break my spirit
or ever take my soul

 

Dealing with Stinky Stuff

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I’ve been struggling with writing for PJ lately. I keep asking myself why and this week it has become clearer. I live so close to this disease that sometimes it’s hard to write about it and live through (what it seems like) issues surrounding – twice. If everyone felt like that, there’d be no one to help us through our struggles that have been there before us on those difficult paths. I am listening to KLOVE (a Christian radio station) this morning, and I think I may have been released from the funk I have been in.
 

The other day I was talking with someone who was telling me I have a gift of encouraging others. I don’t see myself like that but I’m glad that some people may feel encouraged and not discouraged when they are with me! There was a time when I honestly believed I was nothing but a discouragement to others. What waste of our lives to believe such lies. So… I was talking to this woman and thought to myself, I do believe God has gifted me to write and He did allow this stinkin’ disease to overcome my physical being and so I must write – sometimes – about stinky stuff, in the hopes of encouraging others.
So I am sitting here listening to KLOVE and a song by Josh Wilson comes on. Now, I’ve heard it several times before but never listened to it as intently as this morning. Sometimes we get locked in a dark pit of despair when something has been taken from us, (be it health, employment, a spouse, a loved one) having convinced ourselves  that we have nothing to offer . We convince ourselves we have no reason to keep trying. After all, with our great losses, we are less now. Oh, how so not true, because the opposite has actually occured.  We are actually more! So much more. Because of the losses we (can) have so much more compassion. So much more empathy and we can have so much more grace. We listen better because we have a greater understanding. We are just one, but we are a brighter one because our light has been fueled by loss. In our worldly understanding we feel we can no longer make a difference because of our losses, but we have a God who makes more from our less
 

In Josh Wilson’s song, Keep On Pusing Back the Dark, there is a line that says, “Whatever you do, just don’t look back.” When someone has a chronic illness (stinky stuff), they may wonder, “What does that mean for me?” 

When we our focused on our diagnosis, we are looking back. We are despairing, grieving, losing. We cannot win a race looking backwards. We cannot win a race by going back to the starting point over an over again. When we find ourselves at the starting line – the diagnosis – in order to win the race we have been assigned, we MUST move forward in order to win.

How do you move forward when the stink is overwhelming? How do you win?

That will look different for everyone, but Josh (yes, we’re on a first name basis now) generalizes how that works: “Don’t underestimate the God you follow. Don’t lose heart and keep pushing back the dark.”

We must take an active part if this stinkin’ fight:

KNOW who God is – His mercy, His power, His grace. No matter what comes we must keep trusting, believing, and not lose heart. We must not stop pushing back the dark and that only happens by moving ahead because, as we move ahead, the dark gets further away.

All races are not won by running as fast and furiously as our bodies will perform for us, but by being intentional, persevering, not giving up.  And some races are not against others – of a competitive nature – but against ourselves. The race against a chronic disease is fought one patient at a time, giving his experience – his expertise – to those not so quite as far in the race so that they are able to run their best as well.  Or, advice, experience, and/or expertise can be given to the coaches (the doctors, the researchers, the advocates) to help them know how to coach best. In other words, this race against PD isn’t just a one man event, but will take a team of encouragers to get us across that line.

And that’s what we need to be in our race. Encouragers. Sometimes we will cheer others on with tearful understanding. Sometimes with much needed humor. Sometimes with a firm and righteous anger when we see someone who’s giving up. Someone who helps another to push back the dark. 

 

As I sit here, finishing up this article, another song comes over the air by Building 429. It is aptly titled (for PD patients) “We Won’t Be Shaken.”

“…I know You go before me and I am not alone.

This mountain rises higher, the way seems so unclear

But I know that You go with me so I will never fear

I will trust in You, whatever will come [my] way
Through fire or pouring rain
No we won’t be shaken
Whatever tomorrow brings
Together we’ll rise and sing
That we won’t be shaken
No we won’t be shaken.”


I am not shaken. I know who goes before me in this sometimes  stinky journey I have been put on. I am not alone and when my mountains seem to rise high and the way unclear, I know who goes with me. I am not shaken. 

I am encouraged. Thanks KLOVE. Thanks God.


Coming to the End of ME

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“This past year I could feel myself slipping away. Tormented by daily how’s it going to happen, when’s it going to happen  and what’s it going to look like (in terms of my having Young Onset Parkinson’s disease). It can feel all-consuming. Add the natural element of depression that you get for free when you have PD and you’ve got the beginnings of a devouring darkness that vies for your joy, your hope, your soul, your very being.Light_in_the_Darkness.JPG

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you believe – those others have spoken to or about you and those you tell yourself. You believe these lies above what you know is Truth because they can be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to others as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.”

I started  a post yesterday with the words above but it went in a direction different than what I had  thought. Now I am drawn back writing out the post I was thinking about to begin with   – that of not being sure if I could hear or see or even know the truth in the midst of the darkness I seemed to be enslaved in.

My main struggle seemed to be with my disease. I had a rough beginning to my year when I not only realized but had to accept the fact that the neurologist I had, who  had also become a friend, would not be able to continue as my doctor. Ten years under his care. 60 to 90 minute appointments averaging every three to four months over those ten years, two surgeries, and visits that felt more like two friends having tea and cookies  than being  injected  with Botox for stiffness  and pain 10-15 times  per  visit.

I didn’t want to start over. He knew me. He diagnosed me correctly. Told me I didn’t have Lupus (yea!) but had Young Onset Parkinson’s disease (oh boy!). Told me he’d be with me ’til the very end…

But our end looked different than I expected. I pictured me ushered into my last visit with him in the confines of a wheel chair, drooling all over myself, slumped over, nodding yes because I can no longer control the tremors with medications or a zap from the wiring in my brain.. Because of my deteriorating state,, people go about thinking I am  so friendly and always waving at them (tremors of the arms and hands) and so agreeable because I’m always nodding yes (tremors of the head, neck, face).

That’s not how it was a year ago. A year ago I began to think this was becoming a burden. The medical bills, the distance,  the drive.

Then I attended a conference where my doctor was speaking and found out he had been  deathly ill and was fighting a  diagnosis  of his own . The next month I went to my regular scheduled appointment and he looked worse than the month before. After my appointment he was admitted back into the hospital for the fifth time in six months and followed up with a three to six month sabbatical to get well. While he was trying to recover, I was sinking further into darkness.

Why was it so hard to let go?

I asked myself that question constantly. Was it because he had become more than the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become a friend? Was it because he really did know me so well? Was it because when he said he’d be there through my first brain surgery he really was (even though he didn’t need to be)? Was it because when they’d wake me to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s it going to happen, when’s it going to happen and what’s it going to look like – you know – till the end, like he said? Like I pictured?

I was going to be that little old, agreeable, friendly lady in the wheel chair, not the patient who worried about her doctor who was fighting a battle all his own. While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way and made an appointment with a highly recommended neurologist/Movement Disorder Specialist  in Eugene – only three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions. But it was a reminder of what I had lost.

My doctor.

It was nearing the end of the appointment when my new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow been broken. 

While that fix-it surgery was harder on me than the first two surgeries, it affirmed in me the fact that God is in control and knows what’s best and… I am stubborn.

I seem to hold on for far too long that which God is trying to pry loose from the clutches of my fingers. I sometimes felt like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, what’s it going to look like  and who was going to know what to do  about it?

I heard it again…

I will.

I sat in the  doctor’s   office   and a peace came over me  and a light began to fill the darkness as  I waited for confirmation that the DBS unit was  now in right, working order.   The doctor made adjustments that day, the following week, the week after that and in two days she’ll adjust again. And I will be there. Not because those weekly trips are actually doable, but because I have learned this year – again – that God is in control and has His best in mind  for me, even though I can be stubborn. When I let go, He is free to work.

I haven’t felt this good in probably two or three  years. The other day I was speaking to a couple and the conversation led to my having PD. The gentleman said his father had PD. “He didn’t get it until the age of 62,” he said, “but he lived ’til 92 and it was only the last two to three years that were really bad from the PD.”

That’s not everyone’s experience, but that not a ‘bad’ experience (‘bad’ being relative).

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair but I do know who’s going to be there with me – through it all.

He will.

It’s A Wrap: Bringing Parkinson’s Awareness Month to A Close

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Even though Parkinson’s Disease Awareness Month will be coming to a close as of today’s end, we can still continue to spread the word. To celebrate the last 30 days of an attempt to educate, inspire, and bring awareness to this little monster and its ability to change the course of one’s life, here are my top 3 favorite awareness items from the month by three different sources: Sheryle Klingelhofer, Beth Bjerke, and PJ’s most popular “Top Ten”. 

 

 

PRICELESS! 

This one’s from Sheryl Klingelhofer, Facebook page “A Life with Parkinson’s”:

OK, MOST folks talk about the support they get from friends and family with their Parkinson’s and dystonia difficulties…however I hear of some who say that after their diagnosis, they are often rather abandoned or even get griped at over the disorder. And while we HOPE that insight and education through gentle sharing would work, well, it often doesn’t.

It may be from a movie, but if you get bugged by insecure or unfeeling individuals, try this little quote…it sums it up for them nicely!

 

 

Next, we have the popular

THE TEN THINGS PARKINSON’S PATIENTS WANT,

(sort of)


1.  To feel good.


2.  To smell (what’s baking in the oven).

 

3.  To have people believe that the person with PD isn’t pretending to have a chronic disease.                                Really. We have better things to do.


4.  For others to understand that although they can’t see all of the effects, the disease is real.

 

5.  More dopamine. We gotta have more cow bell dopamine.

 

6.  To not shake all the time. It would be so nice to stir our coffee because we want to.

 

7.  For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.

 

8.  To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.

 

9.  A plastic bat to hit others over the head when they make thoughtless comments.

 

10.  A cure



and then last, but not at all least, a plea from Beth Bjerke:

“Last week I changed my profile picture [on Facebook] from what was a symbol of Parkinson’s Awareness Month, to a picture of myself. As nice as the comments were, I was taken by surprise by how many took the time to say something nice. Yyet on the other hand, I’ve posted something about Parkinson’s [most everday this month] and it [seems] to go unnoticed. I, like so many others, am fighting a progressive disease that has no cure.

There are many three- or four-little-words sentences we all like hearing: “You look nice…” or “I love you…” or “Have a nice day…” 

However, there is also another four-word sentence I so hope to hear, not only for myself but for those inflicted with the disease and those yet to come.

Four simple, yet complicated words…

THERE IS A CURE.”

I do believe that one day Parkinson’s disease will only be a memory. That is called having hope. Without that hope, what do any of us really have?

April is Parkinson’s Awareness Month. We are at the end an I am reaching out to all – take a moment and help bring awareness to Parkinson’s disease. Please let me know you’re behind me, that you truly care, and that I’m not just another face.

Beth”


How about you? Is there something YOU can do?


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