How Do You Know When Your Parkinson’s Is Getting Worse?

How Do You Know When Your Parkinson’s Is Getting Worse?
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One of my biggest problems with the current science about Parkinson’s disease is the way that progression is described.

Early stages of the disease are poorly understood and explained. The transition from early to middle stage also lacks a firm definition, particularly if one looks at the disease as a spectrum phenomenon. Given the spectrum presentation of the disease, it is likely that progression, particularly during early and middle stages, is widely diverse in symptom representation.

I am extremely grateful for the slow progression of my Parkinson’s disease. I know that this is a variable that can affect many patients. I have offered some ideas on how to slow the progression, but what’s missing is a description of what the progression from early to middle stage might look like for my atypical case of Parkinson’s. Please keep in mind that I have a different definition of early stage than what is commonly found in the literature.

Following is a list of my early- to middle-stage symptoms:

1. I have increased numbness in my right foot. My foot feels like it is encased in concrete, making it difficult to maneuver, and I can’t feel it when walking. Both my knees and back hurt after walking. If I’m not paying attention (being mindful), then I experience increased balance and walking problems.

2. Now I’m developing numbness in my left foot, but it’s mild, unlike my right foot.

3. I’ve noticed numbness starting in the little finger of my right hand. This makes it harder to use the computer mouse.

4. I now have consistent numbness on the right side of my face with episodic facial spasms that can be extremely painful. More studies are identifying these symptoms of peripheral neuropathy in Parkinson’s patients.

5. My sleep disturbances have increased, and I wake every two to three hours at night. My waking dream motor activity occurs more often. To counteract this, we adjusted my levodopa medication schedule, which has reduced nighttime dystonia and allowed me to fall asleep earlier than 2 a.m.

6. I have more episodes of swallowing dysfunction with liquids, particularly when I’m not paying attention.

7. My fatigue increases with attempts to sustain moderate motor activity. I can tolerate physical activity for only two hours before I need rest. Riding in a car for more than two hours is painful.

8. Deep fatigue severely affects my mental concentration. Now I can only sustain concentration for about two hours, after which brain fog sets in.

9. Depression and anxiety are now real problems, not just occasional surges. Unexpected situational stress combined with deep fatigue causes increased emotional liability, which is becoming more difficult for me to self-regulate.

10. Temperature regulation is more of a problem — I alternate between sweating and freezing feet. I have little idea if my body is “cold.” My wife will say my skin temperature is quite cool, though I have no awareness of it.

11. I experience olfactory hallucinations. Episodes occur once or twice a week, with no discernible physical cause from an external source. They last up to 30 seconds then disappear.

12. I notice persistent neck and back pain that can’t be attributed to muscle overuse or poor posture in a chair or bed. It is a sensation particular to Parkinson’s and my off periods.

13. Levodopa no longer works as well. My off periods are longer and more intense. More time is needed to manage symptoms, which has become a full-time job.

All of the symptom changes increase strain on family relationships. It is more difficult to schedule family time when symptoms complicate participating in activities. Relationships can pass from disappointment to resentment quickly.

Mrs. Dr. C and I work to educate family and friends about what is going on in our lives and always share our love. In doing so, we try to refocus on the good times and our relationships beyond the Parkinson’s symptoms.

As symptoms change or increase in severity, accommodations must be made. One of the accommodations we are making is changing from a weekly column to semimonthly. We hope you will continue to check in with Dr. C’s “Possibilities with Parkinson’s” on the first and third Fridays of the month.

Many people with Parkinson’s are experiencing an increase in symptoms during these difficult times. Have you experienced an increase? To help our readers further, we hope you will share in the comments below any increasing or new symptoms you have experienced recently, and how you manage the challenge.

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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.

Dr. C is the familiar pseudonym for readers who visit “Possibilities with Parkinson’s.” The love of writing has spanned his careers as a research theoretician, brain rehabilitation clinician, and college professor. Dr. C was first diagnosed with early-stage Parkinson’s disease in 2014. His interest in how Parkinson’s disease can manifest itself in other body and mind symptoms has become a focused area for his research and writing. His goal is to share current medical research on how Parkinson’s can be diagnosed in early stages, and to help other early-stage Parkinson’s patients manage their disease process in a holistic healing approach.
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Dr. C is the familiar pseudonym for readers who visit “Possibilities with Parkinson’s.” The love of writing has spanned his careers as a research theoretician, brain rehabilitation clinician, and college professor. Dr. C was first diagnosed with early-stage Parkinson’s disease in 2014. His interest in how Parkinson’s disease can manifest itself in other body and mind symptoms has become a focused area for his research and writing. His goal is to share current medical research on how Parkinson’s can be diagnosed in early stages, and to help other early-stage Parkinson’s patients manage their disease process in a holistic healing approach.
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