Smelling the coffee and the roses!! Or Parkinson’s Disease, the good, the bad and my DBS Dedicated to my husband, Al, who holds my hand and my heart in his.

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By Lynda McKenzie, February 20, 2005
 At times I almost regretted my decision. Sore, angry, dependent, weak and impatient, my body went from wild, uncontrollable flailing movements to severe muscle cramping to a wonderfully calm, still feeling. It was those tiny glimpses of ‘quiet’ that kept me going. As the swelling from my surgery went down and my neurologist adjusted my stimulator settings those moments became longer and longer and today the cramping is gone completely and I know what to do about the wild flailing. Most of the time, can’t, and won’t have been replaced by ‘can’ and ‘do’.

Before having my Deep Brain Stimulation (DBS), rotating periods of ‘ons’ dyskenisia, and ‘offs’, dystonia, mixed generously with ‘freezing’ were my existence. My social life disappeared except for a few good friends who didn’t let my unpredictability stand in the way of our ‘games’ nights. My girlfriends visited me, never knowing if we’d be going out as planned or if my body had decided that a day on the couch was in order. My walking, or lack of, abilities limited shopping trips and an enjoyable stroll anywhere was impossible. I avoided many places I would have liked to go because I was tired of my low attention span, inability to stay still, confused and slow speech and a face that contorted at will which inevitably frightened children and caused respectable adults to gawk. It seemed a very long 10 months since I originally applied for this surgery and I felt as though I was careening down a one way path as I waited for the phone call that would tell me my turn had come.

As I waited, Sneakers, our cat and I developed a closer relationship. He seemed to be able to sense an episode of increased activity or rigidity. When he sensed cramping, he tried to cover that area of me with his warmth and if sudden, unexpected movement occurred, he just dug in and hung on, determined to ‘ride out’ the storm.

The call came just before Christmas, 2004, but it really didn’t click. My first thought was that they were phoning to do a survey on dyskenisia which I had said I would do the last time I visited my neurologist. But the nurse continued, “your surgery is scheduled for Jan 12”. That’s all I really heard. I knew she was talking to me but my mind started racing …or did it go blank. I’m not sure. Suddenly my insides felt effervescent. Like a can of pop that is opened right after being shaken. As I bubbled inside I listened as calmly as possible mentally calculating that it was just 3 weeks away.

The decision to have this surgery had been long and involved. I almost felt I was betraying the fetal tissue double blind study in which I had participated from 1996 - 1999. For some reason I felt disloyal, as though I was abandoning ship. However, as the people involved in that study in the states casually let the participants fall slowly into never never land and I realized that my contribution and importance in their study had suddenly become a done deal I felt a freedom to go ahead and do what needed to be done for me.

I dwelled needlessly on the pre surgery stuff- preparing as each day brought me closer, will I worry? Not really, I have enough people to do that for me. How will I be as I slowly reduce my meds? How will I manage to get to the hospital the day of the pre op levedopa testing while totally off? How will I get there on the day of the surgery. How will I react to MRI when I’m twisted and tight? And then there’s the ‘halo’. I already know how much that hurts – will I feel as brave as I did the last time I had it fastened to my skull? Little did I know at that time that getting the halo on would be a breeze compared to what followed!

*****
One month later:

I have survived. Four weeks have passed since 2 surgeries within two days, one of which lasted for 6 hours. Not only did I have to remain awake throughout this entire procedure but my surgeon, in his wisdom, put 25 staples into my head without the benefit of freezing.

In spite of my distress whenever I hear the word ‘staples’ I reap the benefits of that trauma, although Business Depot is now my first choice for office supplies. I have replaced 30 odd pills a day with 1 permax, and 1 amantadine. I have two bare raised spots on my head just north of my hairline. Two sets of 4 stimulators now reside under those little pink bumps, buried deep within my brain, wires trail down the side of my neck (thank goodness under my skin) and a disc about the diameter of a small Boston cream donut and the thickness of one of Al’s super pancakes lives just above my right breast. As I reread this I am making a mental note as to my pre occupation towards food.

My neurologist is still working on ‘fine tuning’ me. She tells me I’m different. I told her many would not argue with her. When we visit her at the hospital, she presets a certain voltage range so that Al or I can bop me up or down 10 % of a volt as needed. Al has become a master at reading my movements and deducing whether I need to go ‘’up’ or ‘down’. He does a fine job, I’m just not too sure about the 'hehehehehe' he fails to hide from me as he 'zaps' me. We are both convinced I need a 5% choice too. Many times a voltage of, say 1.8 on my left side results in tremor and stiffness, and upping it to 1.9 results in immediate dyskinesia. Other than that, I am very confident that it won’t be long before we hit on the right settings. And if I begin to pick up the odd radio station I’ve already told my neurologist that I prefer FM to AM,

Dyskenisia - my constant friend for the past 8 – 10 years - is not taking its banishment lightly. So I try to keep my settings low. As long as I can keep the tremors away, I am then able to be STILL. Quiet. Non- moving. Perfectly relaxed, not stiff, or cramped, or tight. Able to move, or not…whatever I happen to feel like doing. As non dyskinetic as a marble statue. As non dystonic as a handful of new play doh.

As I lie in bed at night my body is quiet and peaceful. The exhausting constant motion and the painful cramping seem so far away. The tears brought on by muscles that could not stop tightening, contracting, twisting and contorting my limbs, neck and face are gone. The annoying and embarrassing ‘freezing’ has disappeared. I no longer freak out sales girls who can’t understand why I’m still standing at their cash desk when they thought the transaction had been completed. I am no longer nearly toppled over by well meaning friends who thought that all I needed when motionless was a good strong pull. And Al and I no longer dazzle friends and strangers when he picks up my rigid body, shakes me, puts me down and I walk away without blinking an eye. I no longer need to bounce my ball, pretend to bend over and pick something up, carry my walking stick, count to myself or listen to Little Eva singing ‘The Locomotion’ in order to walk. I just do it.
 
*****
These days;

I sleep a lot. An added, unexpected bonus. And when I waken, I hop out of bed without taking any meds or accepting help. I make my own breakfast and carry it to the table. No more crawling because my toes are so cramped up that I feel like an old Chinese lady whose bound feet no longer support her. I’m also not so thirsty my lips stick together, and my thick tongue prevents speech. I don’t freeze anymore, loose my words in my head, or shuffle across the room. For the first time in ten years I feel hunger pangs, perhaps because I have even begun to notice different scents. Today I will smell the coffee and the roses.

These days the sun shines a lot more – even though others may complain of the clouds. Milkshakes are smoother, crisp apples make my nose wrinkle and pyjamas fresh off the line smell as sweet as the hanky my grandmother used to dry childhood tears. I’m not afraid to start a conversation. I know I will be able to participate in it without loosing the words or the strength to speak them. My new treadmill is reminding my legs how wonderful the smooth symmetry of walking can be. One day soon my neighbour will be surprised to see me waiting to join her on her early morning walk around the block.

Unfortunately some things have not changed. I still have Parkinson’s. I still have a body with a mind of its own that likes to remind me not to be lulled into a false sense of security. It is difficult for those who are around me often to see me functioning well…taking back old responsibilities, walking easily, laughing at silly things that somehow weren’t at all funny 2 months ago, enjoying life. Can they possibly understand the tenuous ridge on which I balance where even the taking, or not, of a quarter tablet of sinemet can result in periods of unwanted movement or aching limbs. They assume that now parkinson’s is a thing of the past, a conquered nightmare. Unfortunately, they are wrong.. This disease still cunningly waits on the sidelines, ready to dominate once again. It watches for any weakness that will allow it to gain t he upper hand once more. So, while enjoying every bonus the DBS gives me I must remain diligent in my self-awareness, physically, emotionally and spiritually. For some reason I have been given a new life. A precious gift. But my kindergarten grasp of the ways of the universe has not shown me why yet. Until then I will take each day as it comes and make the best of every moment.

I’m afraid there is more that hasn’t changed. I must confess that even before Parkinson’s I have been a procrastinator and not very fast at thank you notes, I have more ideas than ability to complete them all. I still tend to toss my clothes over the chair in the bedroom instead of hanging them up. Al has wisely accepted that I will never learn how to load the dishwasher properly and making my bed could happen ten minutes before I go to bed as easily as it could ten minutes after I get out of it in the morning. I’m afraid my body can no longer be classified as svelte and I will have to find a suitable exercise program now that I no longer have the Miss Hyer Dyskenisia as my aerobics instructor.

As far as my journey with PD goes, there is another factor in my recovery that has not been mentioned yet. My friends and family, from Vancouver, to Florida, to Newfoundland and New Brunswick – they were there for me.. During the weeks of my surgery and early recovery, I know the airwaves between earth and heaven were jammed with positive thoughts and prayers for me. Thank you so much, I know you were heard.

What would I have done without friends who sat by my bedside even though I showed no signs of returning from dreamland within the next few hours. Or those who visited bringing thoughtful gifts of homemade soup, cookies, sandwiches, cookies, muffins, healthy drinks, and, because they all know of my penchant for them, cookies. The flowers I received were incredible! Many kept contact by phone through Al when telephones posed a acrobatic problem for me. I received tender treatments of reiki, and therapeutic touch. But most of all, throughout the entire time, the ups and downs, tears, frustrations and joys, on’s and off’s I always felt surrounded by the warmth of Love. Thank you all.

Today I feel healthy. With my tape measure handy, I look forward to spiking my hair when it finally reaches the 1inch mark. I have to admit to trying a wee bit of gel on the back of my head this morning. It didn’t help anything, or make my hair look longer, but I knew it was there and it reminded me of the day not too far away when I would be able to ask Al to ‘fluff me’ again. Who know s though? Maybe my hair won’t be curly anymore? Maybe it will grow back in straight? I guess then I’d have the opportunity to experience how the other half live. Straight or curly, I look forward to retrieving my hair brush from its hiding place in my top drawer, digging the spritzer out from behind the bubble bath and allowing myself to be mesmerized by the promises made by the hair care products in Shoppers’. Today I will content myself by sitting in front of my mirror and watching my hair grow.

THE END

(for now)