Therapy for the "Parkinson's Mask"

People diagnosed with Parkinson's can be blank and expressionless, and are often more so as time goes on. How to combat this? It's actually imbedded in me from way back - part of the armoring I acquired from years of ridicule followed by years of fear of ridicule. Just keep your face blank and no one will bother you was the reasoning behind this, although it was largely unconscious.

But there were times in my life something else emerged. The toddler visiting at all the tables in the restaurant my parents were dining in, the Thanksgiving and Christmas plays my neighbor and I would create to entertain my relatives, the dance my high school friends and I performed at the variety show; these are all examples of times when I was outgoing and showed an eagerness for attention and admiration. 

I always liked to sing, and I readily joined in at sing-a-longs. I remembered fondly the days of high school chorus practices and performances, so when I saw an ad for  new members needed with the Jersey Harmony Chorus I joined up. I had not the dimmest awareness of what I was in for.

Now I am being asked to perform full throttle, meaningful, expressive delivery of a song in company with my equally effusive female chorus members.  It is the world of the Sweet Adelines. Sweet Adelines come from the men's Barbershop tradition of four-part harmonies. I sing lead, which means I sing the melody and therefore am even more duty bound to be expressive and tell a story with a song, not just by words or melody, but with my face and body. My chorus is a performing chorus.

Jeannie, the vocal coach at last weekend's chorus retreat asked us to go "over the edge," and move and show expression in our faces until we thought we must look crazy. After we were done she asked us, "How was it?"

"It actually felt good," I said.

"You've had an epiphany." Jeannie said. She told me that what I did was not over the edge, but was actually "just right."

The chorus is an opportunity to work on the "mask" that wants to settle on my face and never be removed. It only now occurs to me that by serendipity I have actually stumbled on another therapy for Parkinson's: performing with the Jersey Harmony Chorus.

Singing with the a few chorus members at Palmer Square at Christmas time
(that's me in the long red scarf)

More About Exercise

I was thinking, "Oh no, I probably need to up my dosage on the meds… I don't want to…what should I do?"

The month of December was filled with wonderfulness. My studio activities were finished so I could enjoy the pleasures of Christmas. All month I socialized, cooked (and ate), decorated, sang and played, and enjoyed entertainments with family and friends - really the nicest of Christmases. But by the end of the month there were more and more times I found myself shuffling along, not moving the way I would hope, and others noticed it too.

So, what had I NOT been doing? Exercising, of course. Again, back to the gym. After the first gentle yoga class I had taken in about a month, I felt the difference. I came home and though it was past my noon dose by a couple of hours, I was not exhibiting any of the symptoms of PD. I felt fluid, mobile, and better than I had in weeks.

How soon one forgets.

Moon With Many Clouds;
pastel 1980 (?), owned by John Carpenter

Back to Discipline

Amazingly enough, after weeks of frequent discomfort and even pain in my hip, I went to two half-hour exercise classes and VOILA! Pain gone! After leaving the gym and the following day no hip pain. It had been so constant that I easily noticed its absence.

The classes were "Willpower and Grace" and "Body Flow." Both got the hip moving, first with lunges and squats that one might think would aggravate the hip, and then with yoga asanas - twists, lotus and pigeon that are meant to open the hip joint.

Since I had not been going to the gym or exercising much on my own, I was stiffer than ever. But as one of my teachers likes to say, "yoga is for stiffs." I attempted to lay my torso upon my legs in the forward bends, to press my heels to the ground in downward facing dog, and the attempt was enough. I was so pleased with the benefit of even a small, one-time exercise session that I have made it a point to continue.

I biked, walked or took a class at the gym everyday this week. And my hip is dandy. The spectre of expensive hip surgery has been banished. I hope I have learned my lesson.

Owl
Pre-Columbian Stirrup Vessel

It's Summertime - to Hell with Discipline!

I read my last post just now about rules. I have been breaking the rules for so long now that I am on a roll with it.

For 12 days I went to a clay session at Haystack Mountain School of Crafts and worked very hard, from dawn until late at night. I ate as low gluten as I could when it was easy, but not when I was tempted (stuffed shells, yes please), and never missed a dessert at dinner. So between eating too much, very little physical exercise, and a lot of concentrated work on clay projects while sitting or standing, I found that my feeling of well being declined.

Studios at Haystack

By the end of the session I was shuffling and slow. Pain in one hip and knee woke me in the night and caused me to limp. On the last day to glaze, facing the prospect of having to work and move about in a small space filled with other students, I felt ready to cry. I found a way though. I worked early in the morning, I worked through lunch, and I finished glazing without having to navigate through a crowded room.

It was exhausting, but rewarding. When I got home I rested for two days, then started going to the gym again - for awhile. Summer with its distractions has caused a relaxing of discipline. My hip continues to bother me, my walking is still not very good, yet I'm coasting along just ignoring my body.

I'll have to pay better attention soon. First another trip.

Lessons from the Wheel

Its not easy learning how to throw on the wheel. I have been trying to learn - I've put it off long enough. But it takes time to learn this skill. For me it seems an unreasonably long time. That's why I always gave up in the past.  

So I have had to ease up on the idea of perfection with this media. The clay like some wise old sage instructing me calmly, immovably to master my impatience, to curb my worry, to learn "the ways of the clay" as it spins and spins on the wheel.

I can only control it with the utmost attention, focus and sensitivity. Like a living being, it is.

Oh Yoda, help!

Being Perfect

I read Howard Schiffke's post today on Parkinson's personality traits. What he said rang a bell for me. One trait he mentioned was the impulse to seek perfection in oneself. Howard advises that instead of beating yourself up about your mistakes or shortcomings, remember this:

Your best is your best; you cannot do any better than that. Be kind to yourself and accept that if you are doing your best, it is the best you can do, and it is good enough!

That seems reasonable, right? But to this personality, it's not so easy. For me my diet has been a source of much guilt and confusion. No matter how I promise to be good on a daily basis bloopers occur - I eat a couple of cookies, I have seconds of dinner, snack on unknown quantities of tortilla chips right out of the bag with salsa, etc. Then, no matter how wonderfully healthful and gourmet my cooking has been, how spartan my recent repasts, I am riddled with guilt that I have not been PERFECT.

So I decided to make fairly strict rules for myself, and just like during the cleanse, follow these rules faithfully for a certain time period. I don't have to be perfect on this diet, but I'm not really supposed to veer very much either. For me I feel more secure with rules. When each day was free to be "whatever" with only the intent to be moderate with my diet, it was much too easy to shove the intent aside for the pleasure of food now.

Discipline is positive action. It is not about perfection, but perfection was an issue when I had no rules.

Last Day

It's the end of three weeks. I can go back to three meals a day tomorrow if I want to. What are the results? I have lost weight - about 20 lbs over the 7 weeks since I went off wheat. I look better, I think I look younger. Those are nice things. And the Parkinson's? Still there.

I did not really expect recovery, but what can be expected is greater stamina, energy, health, vigor, those kind of things. Am I energetic? Well, today I shopped for groceries, worked in the garden, organized the shed, made a marker drawing, fixed dinner for others (I had a smoothie which I also had to make) and got my ipad email working again. The last was particularly grueling - ha!

Was it all accomplished effortlessly? No. By dinner time I was dragging my feet around. After my blueberry smoothie and a pleasant chat with my family, I felt better.

I hope I'll not swing back into my old ways. I do intend to continue eating whole foods, and less of the "bad" foods. Fortunately I have the Suppers group now to give support in the fight against food addictions and bad habits. I will post a photo of myself to compare with the photo taken in February in Santa Fe.

 Pictures don't lie. So any difference?