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  • soaniamathur

Sleepless in Toronto...

Updated: Jul 5

My eyes open yet again, the pain in my upper back telling me that this position is no longer an option, that I have spent too much time unmoving in a disease marked by too much movement. Yet the daunting task of turning over is now a battle between my need to shift my body and my inability to make that happen. What used to be innate and reflexive, which then became a little more difficult, has now become impossible at times. What was seemingly easy now requires me to physically sit up, and through, an awkward inching of my hips, my arms pushing me up and over, I eventually maneuver into a new position, relieving the painful pressure on my muscles. The question then arises, will my eyes close once again as the need to rest my broken body is overwhelming or is this the time, in contrast to what nature would normally have in store for me, that my day will begin? Which will inevitably, as experience has taught me, result in a day full of “off” periods and freezing.

 

This unfortunately frequent nighttime conflict is this time, complicated by the few sips of water that were necessary to take my nighttime dose of medication. Does the fullness I feel and the very real but yet unfounded fear of having an accident win or will my overwhelming fatigue or my inability to move at this moment? Or perhaps the vibration that I can sense in my legs alongside the muscle spasm that sends my toes to curl in protest, a counterintuitive combination of an inability to move and at the same time an inability to stop, will win out. I give it a quick thought and decide that no, navigating myself out of bed would be necessary this time, the bathroom frustratingly too far, a minefield of scattered items laying between me and my goal. An obstacle course which during the daylight is easily navigable but, in the darkness, could instead spell disaster.

 

Turning on the light seems like the logical solution, but this never is an option in my mind as I listen to the soft snores of my husband. Usually he has an early morning, a packed schedule of patients to see in the office or in the OR. His hands must be steady, his judgement sharp and I worry that my getting out of bed at all hours of the night for a multitude of reasons has disrupted his sleep far too many times. Never a disparaging complaint is spoken yet I can see the fatigue in his eyes each time my night is particularly restless.

 

As I lie here, I recognize that jetlag is complicating my experience. Ironically (or aptly) I have just returned from Helsinki where I spoke at an international conference about the burden of sleep disruption, and the reality that the symptoms of Parkinson’s disease is a 24-hour battle.

The challenges of this disease and their impact on the quality of life of those of us living with this illness, is reality.

There are many nocturnal symptoms from difficulty falling asleep, to frequent wakings, nocturia, to pain and an inability to turn over, from vivid dreaming to sleep apnea. And these symptoms vary night to night and also change over the years as this relentlessly progressive disease continues to worsen. There was a time that due to one of my medications, I was unable to sleep more than two or three hours a night, a restlessness that lasted years. With changes in medication, falling asleep is no longer much of an issue but the complex interplay of disabling symptoms that I am experiencing on this night, is far too familiar.

 

 



There was a time when I would fall into bed, exhausted by a life full of responsibilities, at work and at home. Where nighttime was one of the only times where my body would experience a brief time of stillness as sleep would slowly take hold. But that was seemingly a lifetime ago.

The comfort of a soft blanket and silky sheets used to hold a promise of reprieve, but now only represent the start of another night of challenges and frustrating unpredictability. 

As I unsuccessfully try and inch my way out of bed without waking my husband, he calls out “Are you ok?”. A simple question but one that elicits more complicated feelings marked by guilt that comes with the painful recognition that my disease significantly impacts those that I love; the undeniable fact that the suffering is not mine alone. Inside I want to call out in frustration at another night lost, yet another thing taken for granted no longer in my grasp. But instead, I answer, “Yes of course I am, go back to sleep.”, a simple request on my part, yet one that is not for me to experience. Not tonight.

 

As the frustration grows, I remember my father, ever optimistic, who most certainly would have wisely reminded me that to have somewhere safe and warm to lay my head in the first place, is a blessing not available to everyone. And as I see the sky starting to faintly glow through the crack in the curtain, I am truly grateful that I will see the sun rise once again, bringing with it, the potential for a better day.

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kimpetrie
Jul 08

Soania, I feel your pain as I too have experienced what you have described, not yet to the same degree but close. Nights are long and lonely as to the following day being a greater challenge dealing with the lack of sleep which intensifies all symptoms. My falls are increasing and unfortunately one fall last year resulted in a broken foot. I am sorry for all of us suffering with Parkinsons Disease. I am grateful for all that you do for us. ❤️

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Lisa Tataryn
Lisa Tataryn
Jul 06

Have you tried Neurofeedback? Sleep improvement is one of the first positive responses to biofeedback of the EEG regardless of what disrupts it! A regulated nervous system spills over into many symptom reductions!

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