Implementing the ‘Pause Between’ in Parkinson’s Management
Armed with the tools of threshold management and mindful movements, I am ready to put the brakes on this accelerating Parkinson’s progression. Having tools and using them wisely are two different things. It’s the distinction between the design and delivery of my Parkinson’s self-management program. For me, the use of these self-management tools starts with intent.
My intent is to decrease the intensity and frequency of the very worst of times, those “ugly days.” My intent is to function better, and therefore, feel better. Making this my primary intent is important because some experiences are difficult to endure as part of improved self-management. Knowing that I have a chronic, progressive condition is discouraging. Knowing that I can work through the worst of the symptoms nestles my intent to function better in a safety blanket of possibility.
This disease often feels like wrestling with a bear, leaving wounds and extreme fatigue. I try to be gentle with my intent, framing it with genuine curiosity and kindness. It’s an exploration of how best to fit these self-management tools into my life with Parkinson’s.
Throughout this process of putting theory into practice, I am checking in on myself and with my partner. How am I doing? I write about these techniques, but are they truly helpful?
After several months of work on these processes, even with proper intent, I found it so hard to use these tools consistently. I would do mindful movements for a while, then forget. When I forgot, I would stumble. Or, I would aspirate during dinner, not concentrating on mindful mouth movements while chatting with friends and family and eating at the same time. Not being mindful continues to result in movement problems.
Even though I was putting in some effort every day, I didn’t see any positive outcomes. The ugly days were still happening, and both stumbling and aspiration were still problems. I needed something more.
I created what I call the “pause between,” which I wrote about earlier this year. To review, it’s a small, often only seconds-long pause before the start of any change in motor movement. When I move from sitting to standing, I take a pause and then start practicing mindful movement. Before I start to get out of a chair, I pause and then direct my attention fully to my body. I find my balance, feel my feet on the floor, and then start to move forward, focusing on being mindful.
Because of the pause between, my use of mindful movement is somewhere around 90% on a good day. That has reduced both stumbles and the occurrence of ugly days.
The pause between has also helped with threshold management, though I’m still learning how best to implement it. The difficulty lies in shifting attention from the Parkinson’s brain/body noise of pain and big emotions to the pause between for long enough to shift perception.
This pause between helps me avoid my automatic responses to system dysregulation (the flicker effect). It gives me time to implement a new Parkinson’s self-management reaction that can replace the auto-reaction. Overall, it has been helpful with managing emotion and pain, but I can clearly see room for improvement. I still lose control. I hope constant use of the pause between can decrease the negative impact of the disease.
The pause between helps me to take the brain path less traveled. There is always the urge to do the habitual response — the path well-traveled. The pause between provides me the opportunity to turn my back on the habit and make myself act and think in new ways.
Overall, my efforts to implement the pause between work because of its versatility. I simply pause before doing any sequence of motor actions. I don’t have to remember every different Parkinson’s malfunction for which I need to apply mindfulness. I just need to practice the pause between at every possible opportunity. I think of it as the “starter button.” I don’t start moving until after I press the button.
What I discovered is that over time, it became easier to use the starter button, to shift attention from habit to the pause between. The easier it was, the more likely I was to do it. The more I did it, the more I benefited.
Significantly for me, the pause between makes it possible for me to slow disease progression. That brightens my day, and my partnership with Mrs. Dr. C, considerably.
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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
Shaun MAHONEY
Hi Dr. C. I have very recently started receiving PNT. I applaud what you are trying to do but I wonder if you are causing yourself unnecessary distress. I find your analyses very hard to read and simply couldn't read today's article in any depth. I guess I come at my PD from more of a hands-on perspective (I was a professional engineer) and to me you are experiencing paralysis by analysis. I live in South Australia, was diagnosed in 2013. We can wait for a year plus too see a Neurologist, and then most of them are woeful and only a couple specialise in PD. So we're pretty much reliant on our own initiatives. A change that I have made which might help you is in the frequency of taking my Madopar. I discovered that the Levodopar blood concentration has a half life of 90 minutes. So you take your pill, it takes about an hour for peak blood concentration to be reached and then 90 minutes later the blood concentration is down to 50% of peak. In another 90 minutes it's down to 25%, and so on. That's a huge variation over a three hour period. Say, for example, your off-times start when you drop to 40% - you'll probably get something like two hours on and another couple of hours off. But you don't need to suffer from this. I take half a tablet every hour and a half and I DON'T GET OFF TIMES, at least not until mid to late evening. I don't have any night time meds although there would be some effect from the rotigotene patch. It's not hard to do. I have my meds in a small flip top container in my shirt pocket and I have a watch with a dozen alarms on it, which buzzes on my wrist. It takes me about 30s to pop a pill, infinitely preferable over suffering any off time at all. I have also learned the hard way - minimal protein during the day, as much as possible kept until the evening meal. This works. I play table tennis three times a week, play competitive lawn bowls, still maintain our home and 1400 sq metre garden, I stumble occasionally, cough and splutter if I don't drink carefully, and so on. When it happens I shrug my shoulders, tell myself to pick my feet up, etc. and just carry on.
Nickolas riesinger
How helpfull is B6 and B12
William Palmer
I think this post about the pause button is one of your best. You write clearly and helpfully. I know I will adopt this strategy. Thank you.