The needs of each Parkinson’s disease (PD) patient varies because there is a large symptom diversity in the disease population. We may think of this diversity as a Parkinson’s disease spectrum: some people display little or no symptoms of a certain type while others describe those same symptoms as severe.
The spectrum is not yet fully defined. In this column, I offer suggestions for the spectrum’s definition and discuss how it may help patients and medical providers. There are six parameters in the PD spectrum I’ve conceptualized. If measured in a clinical evaluation, the spectrum could help us better understand the disease.
Professionals have divided the disease into the “shaking type” and the “rigid type.” Patients from both types range in symptom severity. It is likely that these two types fall on a spectrum with shaking and rigidity overlapping each other in some patients. Let’s make tremors the first parameter, and rigidity the second.
Some PD patients have autonomic muscle involvement such as reduced blinking, urinary flow issues, and bowel movement problems. Let’s consider decreased functioning of autonomic muscles as the third parameter.
Patients also fall on a spectrum of nonmotor problems such as declining cognitive function, loss of emotive control, and sleep problems — the fourth parameter.
Not to make the whole thing overly complicated, but fifth and sixth parameters must be added to paint a decent portrait of the PD spectrum — the person’s history (pre-Parkinson’s brain and motor/nerve activity), and their current and past rehabilitation and treatment plan.
In summary, these six parameters could paint the Parkinson’s disease spectrum:
- Shaking symptoms (fine and gross motor) and associated pain/fatigue
- Rigid symptoms (fine and gross motor) and associated pain/fatigue
- Involuntary muscle changes
- Nonmotor problems (cognitive, emotive, sleep)
- Premorbid history (What was this brain used for? Includes nervous system, medical, and exercise histories)
- Current and past rehabilitation and treatment plan
I think all Parkinson’s patients should be evaluated using these six parameters. If we could hold in our minds these parameters and see that they paint a large spectrum landscape of PD diversity, then it may be possible to improve the quality of life for all those afflicted with PD.
I have an unusual form of Parkinson’s disease so I fall on the fringes of the spectrum (see the diagram). Not only is my disease mostly “invisible” but it also took quite a bit of medical sleuthing to arrive at the correct diagnosis. I went through more than a dozen doctors and an equal number of medications before arriving at Sinemet (carbidopa levodopa). The results were remarkable, and I am so thankful for that.
Being out on the fringes of the PD spectrum has created, and continues to create, problems which I’ll address in the columns to come. Knowing that I fit into the fringes made sense. I shared the spectrum and my place on it with others, which helped them understand my atypical form of PD.
Readers fit into the spectrum in different ways. They can say, “I don’t have that symptom, but I do have that one, and it’s the worst one for me.” Understanding that PD is a spectrum disease may ease the discomfort of symptoms being invisible to others. It can help to describe occurring symptoms to others, particularly your medical provider. It’s a challenge to find the words to match your experience, but the rewards are worth the effort.
Next week I’ll discuss a new look at freezing, called scenario looping.
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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.