The Old Well Ain’t What She Used to Be
I used to bound out of bed, my internal well of resources fully refreshed, ready to tackle anything the day presented. Not anymore. The old well ain’t what she used to be.
With Parkinson’s disease, I don’t sleep well. Despite my best efforts, I don’t start the day with a deep well of resources. Every day, I commit a substantial portion of my available physical and mental resources to chronic illness management strategies. This means I have fewer resources available throughout the day to accomplish personal goals. The remaining resources are a precious commodity to me. All my energies are directed toward not wasting this commodity.
The rehabilitation program I designed for my battle with Parkinson’s requires not only a commitment of resources but also courage and perseverance. Some days I get tired of it all, especially when something stressful happens, like an eye injection.
That’s when I treat myself to a break from my Parkinson’s rehab program. I dive into a pint of ice cream with a side of chocolate chip cookies. Sometimes I extend my normal limits of gaming time. I feel better during this visceral escape, but there are consequences. Too much sugar and gaming drain the well of available resources.
On bad days, I have no reserves for anyone or anything. The risk then is going over the threshold of emotion management. Once again, I am reminded that the consequences of an empty well aren’t worth paying. I think it’s finally sinking in.
From Mrs. Dr. C’s viewpoint, I’m not an easy person to support. With Parkinson’s, it’s more difficult to interpret my habit of holding cards close to my chest. It’s harder for others to assess my mood due to the facial masking of emotions, reactions, or thoughts.
Mrs. Dr. C has become quite attuned to the remaining expressive nuances. When the resource well runs dry, there is more fumbling, stumbling, and mumbling. The area around my eyes, she says, turns a rather unflattering shade of gray.
Every moment of the day, I am either adding to the resource well or subtracting from it. It’s not just the big things in life (like moving halfway across the country during a pandemic) that drain our resources. It’s the daily, little things — the driver who cut across your traffic lane on the interstate, the electrician who came to fix things and left having done nothing, the next-door neighbor’s dog that trampled the garden, and the daily annoyances of Parkinson’s motor malfunctions combined with chronic pain and emotional surges.
Every little annoyance throughout the day dips into the well of available resources. In the past, it didn’t faze me, as I never worried about running out of resources and crossing over the threshold. Now, I cannot afford not to be mindful about threshold management.
I have been contemplating the significance of mindfulness for patients with Parkinson’s. Being mindful is a process of giving sustained attention to conscious thought before it is expressed through action, followed by focusing sustained attention on the action until it is completed. Being mindful of the little things and their effect on the available well of resources is important for me if I want to continue writing despite Parkinson’s, or maybe because of it.
Mindfulness can happen anywhere. I can be mindful in the moments I’m reacting to the driver cutting across lanes. I can take a deep breath and relax. I can be mindful that the electrician might not come fully prepared. I can take a deep breath and relax. And when I do this, my interaction with these annoyances withdraws fewer resources from the well.
Mindfulness can be applied to all motor movements. For example, I can be mindful of every step and every swing of the arm, like a dancer performing. I can be one with my movement.
When I get up from the chair to walk, my brain is focused only on rising, standing, and taking that first step. It has significantly reduced the frequency of my stumbles and eliminated falls for me. If I don’t stumble and fall, then I don’t have to deal with the consequences that follow, leaving more resources in the well.
I’m still a novice at this Parkinson’s management thing. There are difficult days when I fail, am just too tired, and don’t care about the consequences. But even on bad days, minimizing the consequences (from any source or event) means more resources are in the well and available for other things.
Resource well management doesn’t have to be perfect to be helpful.
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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.
Comments
Pearl Menashe
I'm very emotional with this disease. I can't accept it and can't cope with it. Sometimes I want to give up,but I won't. There has to be a cure in the works. Please help.