Stress Management for Living Better With PD
Someone once uttered the maxim, “Everybody talks about the weather, but nobody does anything about it.” If we apply that notion to stress we could say, “Everybody talks about stress, but nobody seems to do anything about it.” This seems particularly true when Parkinson’s disease (PD) patients and their caregivers experience stress.
Stress is about more than wanting to escape the torment of a chronic illness. So often, I’ve wanted to yell at everyone because of the stress the illness places on just simply living in peace. Any internal or external event that triggers a shift away from my homeostasis can cause stress.
My book, “Possibilities with Parkinson’s: A Fresh Look,” was written from our perspectives on how to manage PD. In that book, I propose the idea of a Parkinson’s spectrum that includes homeostasis dysregulation, and avoid the outdated classic presentation of doom that progression will always lead to the end of a good life.
In the book, I propose the idea that improved self-management of stress with PD is possible. Parkinson’s stress is more than a fight or flight response because of the role the second dopamine center plays in moderating homeostasis.
The concept of homeostasis dysregulation can help us identify — and manage — the stressors that we experience with PD. The “flicker effect” can indicate that homeostasis is malfunctioning and may be the early biofeedback that stress is starting to take a toll. Scientific and medical research is ongoing and seems to support these ideas. Much of my writing cites these studies and discoveries as shifts in perspectives on how to think about stress and PD.
A study of 5,000 patients published in npj Parkinson’s Disease identified that people with PD experience more stress than those without this disease. High stress levels associate with a worsening of symptoms, and affect quality of life and self-compassion with the patient experiencing depression and continuously thinking about sad thoughts. Cognitive and communication difficulties, and heightened emotional symptoms such as anxiety, display more acutely under stress.
Stress is everywhere. It’s easy to get overwhelmed. The world is full of contagious drama. Relationships can become toxic with real or perceived unmet expectations. Toxic relationship fumes flood our lives and PD seems to tear off our protection, like a gas mask being ripped away. So many times we feel powerless to stop the external stressors, and we equate that powerlessness with not being able to do anything about its effects on a life with PD.
There are so many stress management techniques that nearly everyone should be able to find something to fit their needs. One helpful solution could be the relationship between PD patients and their support partnerships.
The support partnership is a crucial part of stress management. Mrs. Dr. C. and I have often explored the question, “How can we manage the stress in our lives?”
Managing stress is not about chasing those temporary feel-good sensations or experiences. Instead, it is about working as a team to find an answer. We spend time most every day checking in with each other, being available for each other, and staying focused on managing both of the lives that are under stress.
It has taken us years of stress management practice to shape a new way to live better with PD. It’s difficult to show up every hour of every day to do the mental, physical, and relationship work necessary to adapt to this disease. When one partner has PD, the other partner in the support relationship must manage the impact of those symptoms on two lives. It takes courage, determination, patience, and compassion to help maintain equilibrium.
We can’t avoid stress – though it would be wonderful if we could. Everyday life can be strained by both external and internal events. We can’t change the water heater that suddenly breaks, or overcome fatigue that drains our ability to attend to everything, or be OK about a sudden change in a schedule because something else demands our attention. All that stress is normal for most people and difficult for those of us with PD.
With a shift in perspective and new self-management tools, it is possible to manage stress better. The benefits of adapting and managing stress are as therapeutic for PD patients as any other treatment. We need our individualized approach to help us as patients (and our caregivers) manage those moments. And perhaps slow the progression of PD.
We still have days that are challenging, despite all the hard work. But we can see small improvements and that gives us hope.
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.
As a "patient" for only three months or so I am not inflicted with the challenges of those I met at the support group. Those attendees with 8 to 20 years of "suffering" earned my admiration for their determination in their fight. Being new to the disease I, do not, quite honestly feel overly stressed. No, that falls on my lonely caregiver, my wife of 57 years. She takes care of everything, watching over me, doing the cooking, the cleaning and running every aspect in the home. I hate to see her worn out but she very rarely allows me to help no matter that I feel well enough and capable. We cannot afford paid support so I hope suggestions will come from other caregivers. In the meantime I love you Pat just as you love me.
the stress created by severe Parkinsons trmor is one of the most extreme dicomforts I have ever experienced . there is no let up from then for the rest of the day.. I am most interested in keeping abreast of any developments that reduce this tremor.
Donald Gale Dowd
I was diagnosed with having PD in 2010 although some of the disease’s afflictions had been noticed several years earlier. I have not experienced much in the way of tremors or shaking but have had considerable problems with eating or perhaps more accurately the particular foods ,quantity, time of taking meals. I have and continue to have considerable a build-up of gas and bloating soon after eating ( 1/2 to 1 hrs and lasting for as much as 2 or more hours before easing ) I try to follow guidelines suggested but am not always successful in controlling in timing of meals and food choices. ( travel and or not being at home at mealtime as well as the need to take medications at the same time ) As a result I am generally unable to function in being mobile or responding to or actively joining in conversation (s) with others. Constipation, lack of exercise add to this problem. I am presently setting a more rigid set of rules re: timing of meals and medications as well as set rest periods to try to keep the stomach problems under control.
Perhaps the biggest problem is accepting the fact that am not the 20 / 40 / 60 year old person that inhabits this aging body !
My issues sedem to center aound forgetting tthings like names times Ihave committed to friends , etc. This is distubing tome. And it is painful to me. I don't know how to resolve this problem.