Apathy in Parkinson’s Disease

Just what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no interest or concern. You feel:

  •  indifferent
  •  complacen
  •  disinterested
  • unconcerned

You are

  •  lukewarm
  • aloof
  • cold
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess.

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person with Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, or spiritless.

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to a decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

  • For me, part of the apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):Get up, take a shower, get dressed. Don’t think about how you ‘feel’. Don’t allow yourself to get distracted just be like a Nike commercial and Just Do It. Get going. And laying out your clothes the night before may sound childish, but who cares if it makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how much better you can feel.
  • Take your medications on time. This involves sorting them beforehand and having them ready to pop in your mouth. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing. You’ll pay for that apathetic thinking within the hour.
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it take your joy and happiness, too.

An Attempt at Ekphrasis

Ekphrasis.

img_2971Definition:
Ekphrasis or ecphrasis, from the Greek for the description of a work of art produced as a rhetorical exercise, often used in the adjectival form ekphrastic, is a graphic, often dramatic, verbal description of a visual work of art, either real or imagined.

The following is an attempt at a work of ‘ekphrasis’, inspired by a challenge given by a health site.
Pure, white petals
sit softly atop a limb,
reminding me not only of a new season
quickly approaching,
but new life given to me.
The importance
and pureness
of grace.

Grace so amazing.
Grace so undeserved.
Grace that keeps me
longing,
hoping,
focusing
on ‘home’.

Pure,
white petals
that remind me
of a Joni Earekson Tada song
from several years ago.

Injured while diving
one warm summer day
with friends.
She dove down into the lake near her home,
she never walked again
when she came up
out of the water.

After years of rehabilitation,
she has spent the rest of her days
encouraging others
with
and
without disabilities.

Here is her song
called, Joni’s Waltz, (song #7, 22:02 on YouTube)
written by Nancy Honeycomb:

Though I spend my mortal lifetime in this chair,

I refuse to waste it living in despair.
And though others may receive
Gifts of healing, I believe
That He has given me a gift beyond compare….
For heaven is nearer to me,
And at times it is all I can see.
Sweet music I hear
Coming down to my ear;
And I know that it’s playing for me.

For I am Christ the Savior’s own bride,
And redeemed I shall stand by His side.
He will say, “Shall we dance?”
And our endless romance
Will be worth all the tears I have cried.

 

Pure, white petals

a symbol of innocence regained,

life made new.

Something Good

Parkie the WPC Mascot
Parkie the WPC Mascot

What is the WPC, some of you may ask.

WPC stands for Wilma’s Personal Computer, Wisconsin’s Pretty Cats and a score of other off the wall, made up, random stuff, but in this case, WPC stands for World Parkinson Congress.

The WPC began roughly fourteen years ago when Dr. Elias Zerhouni had a vision to see those who had been touched by PD – caregivers, patients, professionals including physicians, nursing staff, pharmaceuticals and more – come together to discuss the latest research, treatments, programs, etc., all for the cause of not only expediting a cure for PD, but how to live well with PD in the meantime.

Zerhouni (the then head of the National Institutes of Health) shared his idea with Robin Elliott (President of the US-based Parkinson’s Disease Foundation [PDF]), who asked Dr. Stanley Fahn, one of the most recognized Parkinsonologists in the world, to help launch the World Parkinson Congresses. Dr. Fahd. agreed and in 2004 the World Parkinson Coalition Inc, the organization behind each Congress was established. The first WPC was held in 2006 in Washington, DC., followed by the WPC 2010 in Glasgow, UK, the WPC 2013 in Montreal, Canada and now the fourth WPC is currently being held in Portland, OR (September 20-23).

Which all brings me to…

Tuesday night, last night, and the opening ceremonies. But let me back up a tad bit.

I was reluctant to go. It’s a six hour drive. Who would watch Finn? It’s expensive.

Excuses, excuses, excuses.

But you know what the biggest reason I was dragging my feet? The conference was about Parkinson’s disease. Yes, that’s right. But, you may ask – Isn’t that what you have?

Well, yes. But I don’t want it. And I get so tired of thinking about it. So – why would I want to go away for four days and hear nothing but Parkinson’s related subject matter?

And then…

I was offered a scholarship (from Parkinson’s Resources of Oregon via Holly Chaimov, their director) to go (which got rid of excuse #2). I was offered hotel accommodations (see excuse #2). Four people stepped up to watch Finn (excuse #3).

I accepted the scholarship, in hopes of the conference rejuvenating my spirit in regards to this little monster, especially in regards to my blog and so, here I sit, in rainy Portland, the morning after the opening ceremonies at the WPC.

Well, the rain is a welcome sight and the conference? So much more than I could have imagined.

This is now the fourth World Parkinson’s Congress. It seems this year is the year that the Congress has hit an exponential curve of growth. This year’s event boasts over 4,500 attendees and the synergy is the conversation of all present.

The goal for the evening was obvious: to make all atrendies feel welcome.

The evening opened up with a choir comprised of people with Parkinson’s disease. There was an award given for the best video presented to the WPC’s video contest. Some history of the WPC was given. Several speakers encouraged those attending but my favorites were Brian Grant, who touched on how it takes a village to deal with Parkinson’s disease, you, the person with PD, your caregiver(s), your support team, doctors, etc. And then he paused and looked out at those sitting in front of him. After a moment he added, “And you guys right here – you’re my village.”

At that moment, I realized I am a part of something bigger than myself. I may not like that I have this little monster I call PD, but the things it has taught me are invaluable. The people I have come to meet and have gotten to know because of it are a blessing beyond words. And I have a village that understands and is there for me. Thanks, Brian.

It reminds me of the verse in Genesis 50:20, where Joseph tells his brothers when they fear he will do unto them what they did unto him, “…you intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. So then, don’t be afraid.”

Holly Chaimov, PRO Dorector
Holly Chaimov, PRO Dorector

I can now see some light again after going through a period of darkness over this little PD monster. Because I can see the good in the bad. I can see much good. And while I’ll report back on the conference some more later, I just want to thank Holly Chaimov, a part of my village, for thinking of me and encouraging me and being there.

Thanks, Holly. I hope you got your ice cream bar.