Sense of Direction...

The Shaky Truth

Six years ago, my husband and I changed our lives.

We moved from suburbia – leaving our spacious home with pool and beautiful yard behind. We relocated a mere 27 miles away to a much smaller urban condo. Throughout our years of parenting children, we often said, “when the kids are grown and out of the house, we can change our lives. We don’t have to stay in a big house just to have a place the children and grandchildren could visit.” So, we did it. And we love it. Our 28th floor aerie still leaves us breathless. We love the freedom…from lawn tasks, from cleaning unused rooms, and from having to get in the car to go everywhere.

Five years and nine months ago, my husband and I had our lives changed.

My beloved soul mate experienced some odd indicators that something might be awry with his health. I too, began to notice very subtle changes in him. Things only a spouse would pick up…slight hesitations…slight slowness to movements…changes in his sleep patterns. Our mutual and multiple years in the health care field had us, each privately, wondering if we were reading the symptoms accurately. A scary night when he flew out of bed while acting out his dream, and fell on his neck, led to the needed conversation… “something is wrong…you need to get this checked out…you could have been seriously hurt…you need to see a neurologist.” This was followed by the second needed conversation…“he says I have Parkinson’s”

“We are in this together, hon…we will get through this”

We kept it private for a while, and then slowly began telling family…first our children, then siblings, then close friends. And we started to learn about what this all meant to us. He, a pharmacist, and I, a nurse did what we do…we researched the studies and looked for the evidence of best practices within the treatment of this movement disorder disease. We (or maybe just I) retreated behind a cerebral wall. Parkinson’s would not change us. We were still…us. Throughout the years since the diagnosis, we have done everything “right”. We started doing more of what we wanted to do, while we can do it. We have critically looked at our finances and our retirement plan to ensure that we will have the resources to enjoy our lives. We have looked through the rose-colored glasses and we are ready, we can handle this, our Parkinsonian outlook is bright.

Today, I had my first real glimpse into our future.

Today we attended a conference designed for Parkinson’s patients. While standing in the surprisingly long line, I was getting rather irritated that the check-in process was taking so much time. The promised breakfast buffet was a distance away and the long winding hallway was filled with fellow conference attendees. My stomach was dictating my attitude. I was getting “hangry”! And then I looked around.

I saw adults of varying ages – from early 40s to 70s. I saw lots of canes. Some walkers. A wheelchair. I heard conversations about symptoms, physicians, long-term disability, early retirement. As we moved closer to the lecture hall, I began to notice commonalities in some of the participants. Facial expressions were somewhat serious, lacking expression. Many seemed to be shuffling their feet, eyes fixed downward. I watched as participants worked their way through the buffet and to the tables, balancing their plates and coffee mugs in hands that shook. I saw some dealing with poor balance; others exhibiting wild dystonic movements. The room lacked the loud din of other conferences that I have attended throughout the years. It was quieter as I saw couples leaning into each other to talk. I saw…Parkinson’s.

I think for the first time the nurse in me left, and the spouse appeared. You see, when I look at my husband, I do not see Parkinson’s… I see Jon. Sure, I have noticed a slowness to his actions. Sure, I have felt the constant movement of his fingers when we hold hands. Yes, I have seen the multiple vials of medications he must take to get him through the day. Yet, NO…I did not see this future.

Today was tough. I awakened to our reality. I started to feel…ever so briefly…very sorry for myself. In a short period, I began to put the pieces together and was, well…stunned. Then, of course, I immediately felt guilty. “This is not all-about-me”, I kept repeating in my thoughts. I glanced at my husband and found him looking at me anxiously. “I worry about how you are taking all of this in,” he said. I smiled and said nothing…because I knew if I spoke, I would cry.

Our keynote speaker, Bob Kuhn, spoke of finding hope and happiness despite the realities of chronic disease. He chronicled his own journey in the video Today We Ride. In a past blog, Don’t Worry, Be Healthy, I addressed the advice my husband’s neurologist gave him, “do things that make you happy”. This speaker, after describing symptom experiences eerily similar to my husband’s, mirrored the advice. Yet, his message had more finality to it…almost a missive to say – you may not be able to do those things that used to make you happy, but find other things that do.

While his statements were generally positive, I was still feeling shaken while we prepared for the breakout sessions. This was not the style of breakout that I was hoping for. I wanted to BREAK OUT!

A few months ago, my husband sought out a new intense exercise program that incorporated the training that boxers do. It was specifically targeted to people living with Parkinson’s. Our break out session was all about this program, called Rock Steady. My husband came ready…he brought his boxing gloves. In a video shown in the class, Scott Newman, the originator of the program, described Parkinson’s progressive nature in this way, “As crummy as you feel today, this is the best you are going to feel. Tomorrow you will feel worse.” Oh my god, is this how Jon feels daily? What a wake-up call. This was not helping my outlook.

And then I began to notice other things…

I saw my husband conversing with some of his boxing mates…a woman with a cane and a blank stare…a man in the wheelchair. Jon was smiling, animated, feigning punches and kicks. I joined him and in small intimate groupings, we discussed common, everyday things…jobs, grandchildren, and hobbies. Jon was also talking louder, something I keep encouraging him to do. Parkinson’s disease can rob an individual of a voice in a crowd. Their impaired voice, or soft speech leads to being talked over or ignored. Not in this group. They all wanted to hear each other.

I witnessed the camaraderie between the participants. I started to see lawyers, dentists, teachers, businesswomen…pharmacists. I saw courage.

The Rock Steady boxers were ready to strut their stuff. For the next few minutes I watched as they stretched, high-stepped through a course of rings on the floor, and punched at the trainers in sparring gloves as they shouted out their counts…1 punch, 2 punch, 3 punch. I saw athletes.

And then I remembered what I had seen earlier…the gentleman with tender, but shaky hands place a sweater around the shoulders of his wife… the woman who reached up and affectionately stroked her husband’s neck… the daughter holding the hand of her mother. I saw devoted couples sharing breakfast. I saw loving smiles and tender touches.

As I looked around, the I began to see their movements as a dance…

Sometimes it was a waltz…1, 2, 3 (punch) 1,2,3 (punch).

Sometimes it was wild and chaotic, a throwback to the frenetic dancing of the 60’s with uninhibited jerky movements to rock and roll chords.

Sometimes the choreography was slow, one partner leading confidently; the other trusting that they could glide gracefully to dulcet tones, as tremulous hands acted as silent metronomes.

And then I saw our future.

I remembered our song…you know, the one you always associate with your true love. Ours has always been, and will always be, Anne Murray’s, Could I Have this Dance for the Rest of my Life.


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4 thoughts on “The Shaky Truth

  1. Hello Mimi! I am dumfounded. Your writing is magnificent. I felt like I was meeting my very first Parkinsonians…your descriptions are so lovingly direct and forthcoming. The depth of your telling reveals a powerful connection between you and Jon. Indeed, together you two are discovering the silver linings an experience like this can generate. I am sincerely grateful to you for sharing this with me. – Bruce Cathcart, Physical Therapist

  2. Hi Mimi! I was thrilled to see An Encore Life post in my email. It was my bedtime reading last night. I had no idea about Jon and Parkinsons. So this was such an enlightening and informative post. My memories of your Jon are always such pleasant ones, of him being such a lovely, charismatic and funny guy.

    Your experience at the conference is moving. Thank you for such insightful and meaningful reading.

    I’ve always felt that you two have such a lovely love story, and it’s comforting knowing that you have each other. Your marriage is one to watch, Mimi. I’m in awe. You and Jon are in our thoughts as you navigate this part of your lives. XO

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