Stone Face

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The Parkinson’s mask.

The stone face. Robbed of emotion. A blank stare. This is what we call “the Parkinson’s mask”.  It is one of the maddening characteristics of Parkinson’s Disease. I’ve written about this before (see Keep your Requip, give me Photoshop! for example) but not too long ago I came across the work of an artist that I found profoundly captured the essence of this condition. Chris Crossley is a portrait and art photographer based in Victoria, Australia. He was diagnosed with Parkinson’s disease in 1997.

In an exhibit entitled “Concrete” (showing presently at Ballarat International Foto Biennale in Australia), Crossley uses an interesting technique where subjects, none of whom have Parkinson’s, were asked to dunk their faces in water and, as they rose, have them try to express a mood or emotion. In part, the aim was to, in Crossley’s words, “give the ‘normal’ person being photographed a small feeling of what the loss of control was like, even for  a couple of seconds, and for me to capture it”.

Crossley has, in my mind, done a superb job of capturing this. I find the images to be haunting and eerily familiar. I could certainly write more about living with this mask (and probably will 🙂 ) but I don’t think I could possibly capture it the way Crossley has. I’ve included a few more images below. If you’d like to see more, visit his Facebook page here.

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Helpless, helpless, helpless, helpless.

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singalong, opus moreschi, flickr

 

I’ve always seemed to have a penchant for musicians with voices that have some character – the quivery Neil Young, the droning Leonard Cohen, the gravelly Lucinda Williams or Tom Waits, the nasal Bob Dylan, the symphonic Rufus Wainwright, the piercing Iris DeMent or the multi-layered Joni Mitchell.

I have, at one time or another, in both public and private settings, attempted to sing along to all of these artists (and many more) with a remarkable consistency. Bad (and that’s not a Michael Jackson bad). Off-key. Somewhat out of step. Just bad.

Nonetheless, this hasn’t deterred me. Whenever I hear a tune I particularly love (and there are many),  I am ready to belt it out and sing along. Without hesitation. Yet, as my children have grown older, public “performances” have been virtually eliminated due to their collective embarrassment while private performances are on a steady decline. I just don’t have the gift of a golden voice I guess – and my children are quick to remind me. Perhaps this explains why I have been drawn to such artists – their “savoury” voices are a good camouflage to my vocal prowess.

Now, I could blame this all on Parkinson’s Disease. Since being diagnosed 15 years ago, my voice has definitely weakened. I speak softer and am frequently being asked to not mumble or repeat what I have said. I cannot project my voice in any kind of crowd without amplification. I speak in more condensed sentences and often with pauses that I believe are sometimes physiological and other times cognitively generated. My mouth dries out constantly from the medications I am on.

This might be a familiar refrain to some. You may have heard the story of a brilliant singer whose career was tragically struck short by PD. After repeated commercial success and mercurial rise in the pop charts, this singer was silenced by Parkinson’s. That’s Linda Ronstadt’s story though. Not mine. I was never that blessed with musical talent.

Instead, I have been blessed with a deep appreciation for those with such talent. A joyfullness that comes from singing along to a favorite tune. An appreciation for healthy vocal chords. And a certain degree of vulnerability that still allows me – nay, requires me – to join in whenever I hear Neil sing….

Big birds flying across the sky,
Throwing shadows on our eyes.
Leave us…

 

 

How does it feel?

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by Flyaa- Watta, Tumblr

It really bugs me. It gets under my skin. It’s a certain feeling that I get with my Parkinson’s that I am consistently unable to explain in any coherent way. I’d describe it as feeling like being on edge – somewhat shaky and feeling this chaotic parade of bugs swarming below the skin’s surface of my legs and arms. It is episodic but maddenly perseverant. For someone trying to get a sense of what my life is like living with PD, getting this would be a good start! Yet, what I experience as an individual with PD can vary so much from other persons with Parkinson’s (PWP). There’s an expression I’ve heard that goes something like “If you’ve met one person with PD, then you’ve met one person with PD”(implying everyone ‘s experiences or needs are unique to them). PD is brutally intimate in that regard! Still, we all experience some common symptoms to some degree – stiffness and rigidity, slower movements, some cognitive change as examples. So, how does it feel to have PD? I recently read in a fellow blogger’s site (Parking Suns by Bruce Ballard) about a conversation between some PWP about how one might best answer this kind of question through simulation. Here are some of the activities they suggested for people wanting to get a sense of what having PD feels like.

  • wear a leg weight on one leg.
  • on the same leg, also wear a slipper that is a few sizes too big. This will help you to “drag a leg/foot.”
  • every two hours take a break and find a bathroom. Quickly, within one minute. This is what bladder urgency is like
  • when you wake up in the morning, walk backwards for the first 45 minutes until your meds kick in.
  • when the phone rings, simulate a freezing spell. Don’t pick up your feet to answer it; instead, drop to your hands and knees to try to crawl to the phone in time.
  • do not carry a glass filled with liquid because your tremor will make you spill it. Alternatively, try to drink from a full martini glass as a friend gently shakes your arm.
  • get a leather belt and a cheap serrated plastic knife like you’d use on a picnic. Try cutting the belt with the knife. This will simulate cutting meat.
  • hold a cell phone in your “affected hand” while a friend gently shakes your arm as you listen and speak to the person you’re calling.
  • hold a cell phone and try typing a text message with your lame hand while a friend gently shakes your arm.
  • to experience dyskinesia, move your torso right and left for 15 minutes without stopping.
  • on one hand wear a thick rubber glove like you’d use for washing dishes. Try picking out 85 cents from a handful of change. Then try to remove your driver’s license and/or credit card from your wallet.
  • try to type or text while wearing the same thick rubber glove.
  • if you’re right handed, unload the dishwasher with just your left hand while your right arm hangs listlessly by your side. (If you’re left handed, unload with your right.)
  • if you’re right handed and use a computer mouse, move the mouse to the left side of the computer and manipulate it with your left hand.
  • one i often complain about is the Parkinson’s facial mask makes my face look like it’s made of stone – cold, unemotional. My body gets more heavy and stiff like stone. Get a big bolder for your lap. Couple of rocks for your shoulders. Some stones for your legs. Heavy, dense, crushing stones. Not a rolling stone.

How does it feel?!

Let me clarify this

Recently, I was invited to speak at a workshop for PWP (People With Parkinson’s) but respectfully declined. At the moment, I don’t feel as strong or confident in speaking to a group as I once was.

It’s not that I was ever a great orator, but my previous lives, at a community radio station, as a social service administrator, and then as an elementary school teacher, had allowed me to develop a certain comfort level and confidence.  Parkinson’s has, at least for the present, taken that away from me.

I find myself to be at times “cognitively impaired” – I can’t seem to find the words I want to use or sometimes lose my train of thought. I feel more stressed which in turn leads to more diskenetic movements, which in turn causes more stress and ultimately  wears me down. My voice has also weakened as the years have gone by.

I have a friend who has been on a book tour for the past year and a half to promote his self-published book. He is developing more confidence as a result of this tour and it is good to see him break-out of his relatively private shell and take on a more public persona as he  recounts his tale of coping with PD.

I do believe that we all have our tale to tell and, in the course of this struggle to live with PD, we have much to share and learn from each other. Some do so in a private way, keeping it to family and friends. Some in more public ways, such as self-help groups, on-line  support groups or blogs. While others, like my aforementioned friend, have taken it to another level by publishing a book to extend their message or story to a wider audience.

I’d like to think that the day will come when I too will take bolder steps to share my stories beyond this blog. But for the moment, you are not likely to find me up on a stage, behind a microphone or being the guest speaker at your next luncheon!

Guest speaker at your next luncheon? What is a guest speaker? Who is a guest speaker? Let me clarify this.
Guest speaker at your next luncheon? What is a guest speaker? Who is a guest speaker? Let me clarify this.