Daryl Wile MD MSc FRCPC (biography and disclosures) Disclosures: Dr. Wile received fellowship support from the Parkinson’s Society of Canada. No conflict of interest is perceived. Mitigating statement: Treatments or recommendations in this article are unrelated to products/services/treatments involved in disclosure statement.
What I did before
Parkinson’s disease (PD) usually presents with problems with motor function; tremor, slowness of movement, loss of dexterity, or problems with gait and balance. The early job of the neurologist is to stabilize these motor problems as much as possible with dopaminergic medication. Of course, this is easier said than done, and medications used to treat motor symptoms often need to be repeatedly adjusted over time. When I trained in neurology as a resident, motor symptoms were rightfully the primary focus of most visits. I knew that non-motor problems in Parkinson’s disease were frequent, but did not appreciate the degree to which they can contribute to impairment until I had spent more time with patients.
What changed my practice
During the first years of my practice as a Movement Disorders Neurologist, I have found that motor problems are sometimes not the patient’s “biggest problem” or the most bothersome symptom. In defining how best to help patients as a neurologist, I now make a point of asking the patient and their family directly: “What is the biggest problem for you right now?”
The available evidence supports this approach. An Italian study of 1072 patients in 55 centres found more than 10 different non-motor symptoms which affected 25% or more of their patients [1]. The most common of these were fatigue, anxiety, leg pain and insomnia, but apathy (present in 21%) was the factor most strongly associated with low quality of life. Another smaller study which tracked patient quality of life over eight years found that while progressive motor disability was the single most important predictor, it was outweighed by the burden of several common non-motor problems (particularly social isolation). [2]
Sleep disturbances are very common in Parkinson disease; a review of published studies found that insomnia affected 18-53% and daytime sleepiness 21-37% of patients with PD in different samples [3]. Sleep can also be disrupted by dream enactment, sleep apnea, nocturnal voiding, axial bradykinesia limiting movement in bed, and tremor. These problems are often not recognized by patients as part of the disease process, and treating sleep problems (or referring the patient to a sleep expert for advice) can improve quality of life.
Cognitive impairment becomes more prevalent as Parkinson disease progresses, and dementia probably affects 24-31% of patients overall [4]. Some patients have primarily memory impairment, but inattention, reasoning and judgment problems, and hallucinations are also common. Depression and anxiety are commonplace, and can often respond to antidepressant treatment.
If a patient presents with falls, one should consider not only their motor dysfunction, but also autonomic problems; symptomatic orthostatic hypotension can be a contributor to falls and hospitalization and probably affects 10-30% of patients with Parkinson’s disease [5]. Other autonomic problems include bladder dysfunction, constipation, which can be severe, and sexual dysfunction. Dysphagia is common and puts patients at risk for aspiration. For many, pooling of saliva and drooling can be embarrassing or socially isolating.
What I do now
Identifying the “most important problem” draws attention to patient important outcomes. While this principle might already be familiar to primary care doctors, it has changed my perspective and my practice in treating Parkinson’s disease and helped me understand how these problems tend to manifest in PD. It is often the case that the dopamine based treatments (e.g. levodopa) have an impact on these symptoms as well. Primary care providers and specialists who see patients PD may find it helpful to review the Comprehensive Care Plan Checklist provided by the Parkinson Society BC (view) to identify common issues.
Some examples include a patient who stopped exercise and hobbies because of (untreated) panic attacks, a patient who told me his improvement in constipation with polyethylene glycol had made “the biggest difference I have felt in years”, another who identified subtle “off” medication dystonia in one leg as a major factor in his gait problem (quite treatable with botulinum toxin), several patients whose sleep problems led to worse daytime function, and plenty of “thanks for asking”.
Unfortunately, the treatments for these problems are also complex, and often require the care of other specialists and allied health colleagues. Several overviews have been published recently [3] [6], and thankfully new treatments are emerging for orthostatic hypotension [7], psychosis [8], and other problems important to our patients living with Parkinson’s disease.
Resource: Comprehensive Care Plan Checklist https://www.parkinson.bc.ca/resources-services/healthcare-professionals/
References:
- Barone P, Antonini A, Colosimo C, et al. The PRIAMO study: A multicenter assessment of nonmotor symptoms and their impact on quality of life in Parkinson’s disease. Mov Disord. 2009;24(11):1641–1649. DOI: 10.1002/mds.22643. (Request with CPSBC or view with UBC)
- Forsaa EB, Larsen JP, Wentzel-Larsen T, Herlofson K, Alves G. Predictors and course of health-related quality of life in Parkinson’s disease. Mov Disord. 2008;23(10):1420–1427. DOI: 10.1002/mds.22121. (Request with CPSBC or view with UBC)
- Todorova A, Jenner P, Chaudhuri KR. Non-motor Parkinson’s: integral to motor Parkinson’s, yet often neglected. Pract Neurol. 2014;14:310-322. DOI: 10.1136/practneurol-2013-000741. (View)
- Aarsland D, Zaccai J, Brayne C. A systematic review of prevalence studies of dementia in Parkinson’s disease. Mov Disord. 2005;20(10):1255–1263. DOI: 10.1002/mds.20527. (Request with CPSBC or view with UBC)
- Fereshtehnejad S-M, Lokk J. Orthostatic hypotension in patients with Parkinson’s disease and atypical parkinsonism. Parkinsons Dis. 2014;2014:475854. DOI: 10.1155/2014/475854. (View)
- Zesiewicz TA, Sullivan KL, Arnulf I, et al. Practice parameter: treatment of nonmotor symptoms of Parkinson disease: report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2010;74:924–931. DOI: 10.1212/WNL.0b013e3181d55f24. (View with CPSBC or UBC)
- Kaufmann H, Freeman R, Biaggioni I, et al. Droxidopa for neurogenic orthostatic hypotension: a randomized, placebo-controlled, phase 3 trial. Neurology. 2014;83(4):328-335. DOI: 10.1212/WNL.0000000000000615. (View)
- Cummings J, Isaacson S, Mills R, et al. Pimavanserin for patients with Parkinson’s disease psychosis: a randomised, placebo-controlled phase 3 trial. Lancet. 2014;383:533–540. DOI: 10.1016/S0140-6736(13)62106-6. (View with CPSBC or UBC)
Loading ...
This article was very helpful and informative and provided a new prespective to managing Parkinson’s patients. Thank you.
Sometimes what appears trivial to us (constipation) is far from trivial for patients. Taking the time to identify these issues can be very rewarding for patient and practitioner.
Definitely worth asking about non-motor sx. Easy to do and sometimes able to fix.