With Parkinson’s Disease, Some Days All I Can Do Is Wait
Waiting out the disease's natural cycles has tested this columnist's patience
I had plans for a day in paradise. Crisp fall weather beckoned me outside to the garden. It was also day three of my 10-day Parkinson’s week, which is usually a good day. I was eager to get into the day, but Parkinson’s disease had other plans.
The night had been unusual with repetitive bursts of akathisia, the inability to sit still. The following morning was abnormally loud with Parkinson’s noise. I walked outside three times to survey the garden project I had planned to work on.
I decided on my third attempt at reconnoitering, when I nearly toppled over from nausea and back spasms, that something was amiss. Plans had to change.
I discovered that this day was going to involve a bowel movement. With Parkinson’s, there is an increased occurrence of constipation. It had been three days since my last foray into the bathroom for this necessity. I have learned there is no rushing nature’s natural course. While I don’t wait to pee, sleep, or eat, I must wait for other things to move along at their own pace.
Living with Parkinson’s involves inclement days that require special considerations. I need to know the precursors to such days, and how to wait until the storm passes.
My body now signals me in different ways from before Parkinson’s. Here is where the practice of being a gentle observer is so helpful. From that vantage point, I can hear what my body is telling me through the Parkinson’s noise. I can then act in a way that enhances my ability to function better throughout the day.
Parkinson’s is transient in nature, going from good days to bad and then back to good again. There are things I can use, like the tools in my Parkinson’s self-management toolkit, to improve the good days and lessen the impact of the bad ones.
But Parkinson’s is still a chronic, progressive illness. It always makes demands. It will drain the well of resources and my energy levels. When that happens, all I can do is wait for the well to replenish. There is no rushing that part of returning to baseline.
Letting go of perfection
I am not a patient man. I demand a certain level of perfection in my writing and projects. I can be demanding to those around me whose actions influence or otherwise affect my own. My history of working hard and refusing to be stopped by life’s obstacles served me well through several careers. Waiting and patience were never part of my daily practice — until now.
Parkinson’s does not allow me to slack off. It requires patience all day, every day, at a level I have not yet achieved. Depleting my well of resources, not managing the stressors in my life, and not allowing myself to rest can all push me past my threshold.
Waiting requires me to allow my body to return to natural cycles. I wait to replenish my energy. I wait to heal. I wait to engage in life and even talk to my wife.
Waiting is the opposite of the “go, no-go” cycles that have started to manifest in my life. It’s the opposite of the impulsivity that permeates the Parkinson’s brain.
When I start to increase my “go” in life and then wrestle with impulsive thoughts, I need to find that “pause between” — a brief pause before the start of any change in motor movement.
I am still learning about threshold management using the “pause between.” It’s difficult to shift perception away from the Parkinson’s brain-body noise of pain and big emotion. I need to use my “TBM” tools (threshold management, brain rewiring, and mindful movement) every day.
Putting TBM into daily practice is difficult. Relearning every movement and every inner reaction is a full-time job.
Overall, the “pause between” helps with managing emotion and pain, but I can clearly see room for improvement. I still lose control. The “pause between” helps me to take the brain path less traveled. It provides me the opportunity to turn my back on the old habits and make myself act and think in new ways.
I have so much more to learn about patience. And waiting. And accepting that my plans for the day might require both. The old way of cramming everything into one outing under the guise of “efficiency” must end. Some things can wait till tomorrow.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Jan Fredsbo
Thank you so much for these words of encouragement. As a caretaker I can't help but smile as I read your words; cause I too, need to learn patience and waiting. My husband has Parkinsons. He also has Vascular Dementia from several strokes in the brain, and Aphasia (unable to speak)
As Parkinson is the latest onset, I learn so much about my husbands disease from reading you, as he cannot speak about it, nor, most like, or, this I do not know at all of course, but I gather with the dementia he is unable to grasp fully what is happening, and Aphasia does'nt allow him to use words to describe how he feels. So from reading your words. I can see parallels and that has really helped me alot.
So shall these words from you. Thank you so much. I cannot really find words that expresses the gratitude and gratefulness I feel from reading you. It all resonnates. Kind regards from Jan
Barbara Kelly
The past 2 days have been wonderful for me. I can almost pretend I do not have PD. I am not being sarcastic when I say thank you for the reality check. The horrors of the week before were not a dream - they were real and so is the fact that this is a progressive disease. I am grateful for days like these and for moments when I can forget for a while the daily toll this disease takes.
James Gibbs
I was diagnosed in 2014 like the author. Like the author, I am not a patient guy. In fact, I’m impatient being a patient. There is no “woe is me” in my life. I don’t have the patience for self pity. I’ve been totally swindled by Parkinsons. It has robbed me of the life I had set in place for a genuinely positive retirement. So you get where I’m coming from. I’m not depressed in the least but I am very angry man.
Where’s the cure? Parkinsons research can’t produce solutions? What have they been looking at since the 40’s? My patience is running out. Blood brain barrier?
The only real hope I’ve seen is from 4D Pharma. "We believe MRx0005 and MRx0029 are the first ever Live Biotherapeutic products for Parkinson's to enter the clinic," said Dr. Alex Stevenson, Chief Scientific Officer, 4D pharma. "Current treatments focus on symptoms but do not address the underlying causes of neurodegeneration.”
Can someone with a little “pull” get this product run up a flagpole and see who salutes?
Consternation and regards,
James Gibbs
[email protected]
Maida Follini
The pause and the waiting and the patience have been found by myself and other Quakers to be helpful in various stressful situations.- as for instance when a strong argument is going on between persons. It is helpful when things get negative, to customarily observe a pause of silence after one person speaks, a time to consider the depth of what has been spoken. We have learned this in our Meetings for Worship, to use silent waiting to keep in balance. In daily life, when stress occurs, a few moments of silent waiting can calm things down, and give us a chance to regain our mental balance. I know it is harder for those with a chronic condition - but even without that additional burden, it is still good practice. My own chronic condition is Old Age!! which can be frustrating. But a quiet pause, rather than trying to fight it, can be helpful.
Mike
Dr. C,
I have been taking the probiotic Neuralli for 38 days now. It has been great for my digestion. There are so many issues with Parkinson’s I feel like if I can do anything to help my symptoms it is worth a try. Blessings, Mike
Barbara Kelly
Unfortunately, Neuralli is very expensive. I wrote to the manufacturer who had mentioned in their literature that they might have a program where they would provide financial aid for patients, but so far I haven’t heard anything. At this point it is too expensive for most people to avail themselves of - which is a real sin.
Julie G Shenk
Greetings, My husband has Parkinson's and is finally accepting the need for acceptance and education (being informed) with implementation. We realize that everyone's journey may be different. I have noticed the changes within and without. He has been very slow to spot them and slower to acknowledge them. This placed a bit of a wedge between us (frustration for me) until he stopped putting his head in a hole. I find myself now becoming his caregiver. Thankfully, he is doing relatively well He has been mine as I have many autoimmune diseases; Fibromyalgia; moderate all-over OA; Fuch's Dystrophy; Dupuytren's Contracture; and now, Hypermobility-Ehler's Danlos which (to me) explains a lot about my suffering and demises. That diagnosis came late to the table of life. I will be 69 at the end of December. I say all this to let you know that I can identify with being an impatient person and a rather--at least in the past and on my good days which are now on the decreased number--a Triple-A achiever. My husband (on the other hand) is a very kind, caring, loving, hopeful, perhaps underachiever due to undetected childhood learning differences and being orphaned early in childhood. He has incredible faith and like a duck, water rolls off his back. For me, that is usually not the case. Patience is his strong fruit. To a fault at times, I might add. ;) Yet, mostly it is a great gift. I am the opposite and I believe we are learning that we need to arrive together somewhere in the middle in order to go through these journeys together. I really appreciated your insightful article and it has greatly helped me.
Dr. C.
Hi Julie ~ I really enjoyed your comments directed towards doing too little can be just as much a problem as doing too much. The literature does point out that apathy can be a significant problem for people with Parkinson's. I enjoy your comment about finding the middle way -- it is a philosophy Mrs. Dr. C. and I strive to attain (all our lives). Wish you the best, see you along the journey of the middle way.
Dr. C.