Tracking My Experiences With Delayed Mid-stage Parkinson’s Disease

Parkinson’s is a progressive brain disease. While symptoms and disease progression are unique to each person, knowing the stages of Parkinson’s can help. Some people experience changes over 20 years or more, while others find that the disease progresses more quickly.

During the first five years after being diagnosed with Parkinson’s, most patients experience the “honeymoon phase,” when most treatments are effective. Then, as Parkinson’s progresses, other clinical signs may present. We might experience profuse sweating or intolerance to cold. Musculoskeletal and neuropathic pain may occur. Motor fluctuations can become an issue five to 10 years after diagnosis. Postural instability (trouble with balance and falls) typically occurs after about 10 years.

Loss of balance is a Parkinson’s hallmark at mid-stage progression, and falls are more common. Early-stage symptoms are still present during the mid-stage, including resting tremor and stiffness, along with nonmotor symptoms, such as fatigue, constipation, and sleep disorders. An important clarifying factor of mid-stage is that the patient is still able to engage in dressing, hygiene, and eating.

Parkinson’s patients also often have difficulty with problem-solving, memory recall, and word choice during the mid-stage. Despite numerous coping strategies to help support independence, work activities, and general living, “no cognitive intervention studies among persons with PD meet all of the criteria proposed in the Institute of Medicine’s Report on Cognitive Aging,” an article in the journal npj Parkinson’s Disease noted.

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Also, “Men who present with PD in their late 50s or older, or patients who experience motor features and gait problems along with postural instability early in the disease, may experience faster disease progression,” an article in the journal Pharmacy and Therapeutics reported.

I am eight years post-diagnosis and just beginning to experience the middle stage of Parkinson’s. Most people with the disease begin this transition earlier.

Instability is more of a problem for me. When I get out of the car, move from a seated position to standing, or turn quickly, I wobble. It takes more than a couple of minutes to regain my equilibrium. I’m currently moving more slowly and taking longer to walk.

On most days, I have a constant feeling of chronic malaise throughout the day. Every day, I have episodes of lightheadedness, vertigo, and muscle contractures in my wrists, feet, neck, and lower back.

Dividing my time

Managing Parkinson’s disease divides my day into two-hour segments. I have 16 hours in a day to use. Optimistically, I then have eight hours to sleep, but that rarely happens.

My day starts with two hours of morning ritual, because “mornings are broken.” To avoid a crisis event, I need two hours of meditation, usually in the morning, although sometimes in the afternoon. Other days, if I have other commitments outside the house, I need to delay meditation. Uninterrupted time is the biggest factor in successful meditation. I can’t have only a few minutes of quiet time before engaging in another activity.

Two hours of daily exercise is my goal. Sustained physical activity beyond the two-hour allotments usually results in my overdoing it. Exercise is weather- and energy-level-dependent, and, like meditation, it can’t be squeezed into the day between other competing demands.

The results of a recent study “emphasized the importance of persisting in long-term physical therapy regardless of whether it is in [a] state of drug treatment.” This study emphasized the “necessity of continuous physical therapy from the early and middle stages of the disease.”

An hour for lunch and dinner includes prepping, cooking, eating, and cleanup.

At the end of the day, my sleep ritual for Parkinson’s self-management requires two hours. A hot shower relaxes muscles that have stiffened during the day. The cats quiet down, and I listen to my audiobooks.

Compulsion

I used to view pain and fatigue as my worst disability symptoms. Now it’s “go, no-go.” The feeling of intense compulsion, combined with being mentally blind to anything but the compulsion, is quite frightening. There is a Parkinson’s terror sensation that is becoming more evident.

Throughout the day, I also experience six hours of “off” periods. I can do nothing physical during those times. Off periods now have an increased chance of a Parkinson’s crisis event occurring.

With this typical 16-hour schedule, where can I fit in writing columns? Things are quite different from the time management strategies I used years ago. I now use off-period time to write the column in my mind. Thankfully, it’s only 800 words. This means my mind must be in a state where that can happen. I get there through mindfulness and meditation.

After living with Parkinson’s for eight years, I’m able to reflect on the self-management tools that help. These are described in detail in my upcoming book, “Possibilities With Parkinson’s: Developing a Self-Management Toolkit.” But I think I’m finding genuine relief and slowing the progression.

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.