Journey with Parkinson’s: Managing Daily Life

I decided I can’t pay a person to rewind time, so I may as well get over it.” Serena Williams

“Mistakes are a fact of life. It is the response to the error that counts.” Nikki Giovanni

Adding On to Your Life With Parkinson’s: Many people, when they get their diagnosis of Parkinson’s, will make immediate radical changes to their lives, for instance, retire from work. Others will keep leading their everyday lives for as long as possible. However, most folks following their diagnosis will change their lifestyle or something I would call their “living pattern.” And over time, one hopes will come up with a strategy that yields the best’ balance’ between “quality of life” and the ability to manage the symptoms and the progression of Parkinson’s. Ultimately, an essential feature to any decision you make adding to your life seems partly related to stress. So the idea is to calculate how best to reduce stress to manage your Parkinson’s best.

“Life is a series of baby steps.” Hoda Kotb

Studies Concerning Health-related Quality of Life (HRQL): In 2002, the Global Parkinson’s Disease Steering Committee published their survey of a large population of persons-with-Parkinson’s (PwP). They found a significant link with depression leading to improved outcomes of HRQL. Interestingly, depression was frequently not mentioned or described by the patient, yet, it was discerned from their questionnaire answers. How one with Parkinson’s copes with the diagnosis is quite varied. A person needs to be proactive in dealing with their life response to a chronic progressing disorder like Parkinson’s. No one is going to do it for you. You will not get stronger and healthier just doing the same thing day in and day out. You get stronger and healthier by putting in the time and effort when you thought it could never get better. Commit to better health and a stronger, more resilient you.

Kulman et al. (2019) found that depression, anxiety, apathy, sleepiness, and motor disability best determine HRQL in Parkinson’s. They discovered that non-motor symptoms were most likely to cause variances in reaction to various daily challenges. Furthermore, they found that motor activities, if diminished, were good predictors of HRQL. Their results indicate that anxiety, depression, excessive daytime sleepiness, apathy, and impairment in activities of daily living with Parkinson’s related to motor symptoms resulted in worse health-related HRQL. This says that each person has their unique short list of symptoms, and from this list, we must devise a plan to modify HRQL. It also reveals that motor and non-motor symptoms gang up against the person with Parkinson’s. Their study suggests that a strong-willed and well-focused reaction to each person’s symptoms can prove instrumental in improving the quality of life with Parkinson’s.

“It’s very important for us all to understand that we are interconnected and we need to hold hands together, especially when the going gets tough.” Michelle Yeoh

Life Adjustments Living With Parkinson’s: Given below is my attempt to generalize such adjustments in living since my diagnosis with Parkinson’s (using 24 hrs to fill the time grid), and dividing up my day with work, family, personal, exercise, sleep, and other time. Your daily grid and divisions of your life may differ significantly from mine; this is just one example. Before my diagnosis, I worked a lot, but I truly enjoyed my career (9 hrs/day was just a generalized time). We need 8 hours of sleep/night (ok, I did not consistently achieve that, but before Parkinson’s, I slept longer and better than with PD). I balanced the rest of my time with exercise, family/personal time, and everything else into the ‘other’ category.

My life adjustment plot shows that with time and my diagnosis, I started working fewer hours. I started a 3-year phased retirement plan in 2019, with retirement being June 30, 2022. My sleeping has steadily worsened over the years, averaging about 5-6 hours/night (but on occasion, I do get 7-8 hrs of sleep). My logic for the phased retirement was to create more time to exercise. It has to some extent, but I genuinely believe the COVID-19 pandemic has interfered with this free time plan. Necessary time with family and close friends has been maintained (not necessarily in person, but by Zoom and FaceTime). And my other time has increased dramatically due primarily to the blog researching and writing and the start-up of the non-profit foundation (the next post coming soon).

“I’ll never forget where I’m from. It’s essential to remain humble and evolving.” Freida Pinto

Managing Stress in Parkinson’s: Chronic stress is harmful to anyone, but it can be especially damaging to those with Parkinson’s (Weitzel et al., 2010). As reviewed by van der Heide et al. (2021), chronic stress can accelerate the symptoms of Parkinson’s. They describe self-help strategies, including mindfulness meditation, as tools to manage stress. From my perspective, attempting to identify the cause of stress in your life is step one. The next step is how possibly to reduce the stress. Third, finding the correct method or technique allows one to (attempt to) manage stress effectively. Finally, knowing how harmful chronic stress is in Parkinson’s, we must develop the skill to identify, manage, and hopefully eliminate repetitive stress cycles in our life.

Recently, Tuijt et al. (2020) reviewed the strategies on self-management of Parkinson’s, obtained from interviews/survey of >1000 persons with Parkinson’s and their care partners. They described the following seven themes for achieving some effective self-management of the disorder: (1) medication management, (2) physical exercise, (3) self-monitoring techniques, (4) psychological strategies, (5) maintaining independence, (6) encouraging social engagement, and (7) providing knowledge and information. From reading this paper, it is vital for each person to fully understand their disease stage because management conditions would change as the disorder progresses. Taking charge of your self-management strategy is empowering. It offers one way to tell your Parkinson’s to back down because you are now in charge of managing your health.

“If you don’t like the road you’re walking, start paving another one.” Dolly Parton

Stress and Quality of Life With Parkinson’s: Chronic stress is a bad thing for anyone to encounter. Stress exacerbates the symptoms of Parkinson’s; well, I am convinced of it. When I devised a chart comparing stress levels and quality of life before and after my diagnosis, I needed to make a few changes to maintain my health. I used a simple scoring system of 0-10 for a small amount to a large amount of stress (Using the same scale for quality of life); I realized that there was a considerable amount of stress in my work world before my diagnosis. I was able to reduce it within the first year after my diagnosis, mainly by a critical self-evaluation of the root cause of the stress and steps to reduce it. Doing this made me feel better, and the notion of self-management of my disorder saw some light.

Since then, I realized that trying to manage stress would need me to slow down at work, which led to my decision to enter the 3-year phased retirement program. The idea is to help you decelerate your work duties year by year and prepare for retirement. It allows one to reduce stress better too, which was all-important for my quality of life. Managing your life is vital for understanding your disorder. If you have the chance to reduce stress from work, definitely take the opportunity. Living with chronic stress is detrimental to us all, but piled on top of Parkinson’s creates an even more cruel situation that favors Parkinson’s.

“If I wait for someone else to validate my existence, it will mean that I’m shortchanging myself. ” Zanele Muholi

Managing Your Daily Life: You will have good and bad days, happy and sad moments, and feel healthy and sick at times, whether or not you have Parkinson’s. It is your decision how best to manage your Parkinson’s. However, staying focused, positive, hopeful, and informed/educated with a dose of persistence offers a path to take charge. You cannot give back your Parkinson’s; there is no two-way street. So accept it, live with it because you still matter to the world around you.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” Elisabeth Kubler-Ross

References Mentioned Above:
Committee, G.P.s.D.S.S. Factors impacting on quality of life in Parkinson’s disease: results from an international survey. Movement Disorders 2002, 17, 60-67.

Kuhlman, G.D.; Flanigan, J.L.; Sperling, S.A.; Barrett, M.J. Predictors of health-related quality of life in Parkinson’s disease. Parkinsonism & Related Disorders 2019, 65, 86-90, doi:https://doi.org/10.1016/j.parkreldis.2019.05.009.        

van der Heide, A.; Meinders, M.J.; Speckens, A.E.M.; Peerbolte, T.F.; Bloem, B.R.; Helmich, R.C. Stress and Mindfulness in Parkinson’s Disease: Clinical Effects and Potential Underlying Mechanisms. Movement Disorders 2021, 36, 64-70, doi:https://doi.org/10.1002/mds.28345.

Weitzel, W.D.; Carney, J.K. Life Stress and Managing Transitions Unanticipated Change of Course: The Diagnosis of Chronic Progressive Neurological Disease: No Deal! In Handbook of Stressful Transitions Across the Lifespan; Springer: 2010; pp. 341-354.

Tuijt, R.; Tan, A.; Armstrong, M.; Pigott, J.; Read, J.; Davies, N.; Walters, K.; Schrag, A. Self-Management Components as Experienced by People with Parkinson’s Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature. Parkinson’s Disease 2020, 2020, 8857385, doi:10.1155/2020/8857385.

Cover photo image by sabri ismail from Pixabay

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