Canadian guideline for Parkinson disease

Date: December 16, 2019
Dear Editor,
Thank you for the making available the Canadian Guideline for Parkinson Disease (CMAJ, Oct 19) with its extensive documentation of expertise and ethical rigor. For the past 12 years, since co-founding Parkinson en mouvement, I and my colleagues have built up years of observation in our work with Parkinson patients using various movement-based therapies.

1. We were surprised to read as one of the key points that new therapies such as deep brain stimulation and intrajejunal levodopa-carbidopa gel infusion are now “routinely” used in Parkinson disease to manage motor symptoms (pages E989 and E1001). Our impression is that these very expensive treatments are as yet far from “routine”. They appear to be available to a highly selected category of patients, at high cost, with the need for specialized technical follow-up for the rest of their lives. There are also myriad potential side effects to these new treatments.

2. On the other hand, we strongly agree when the Guideline asserts - as another key point - that evidence exists to support early institution of exercise at the time of diagnosis, in addition to the clear benefit in those with well-established disease. However, under the Treatment section of the Guideline, we would have added additional movement-based therapies for which there is solid research evidence in addition to the two referenced of physiotherapy and occupation therapy.(1-14) Moreover, there is a group dimension to the treatments we and others offer which can mitigate isolation and loneliness which no doubt contribute to the risk of apathy as a barrier to patient adherence mentioned on page E1001 (“Continued therapy is required to sustain benefits, and this is particularly important in Parkinson disease as apathy is a barrier to patient adherence in the absence of scheduled lessons or training”).

3. Given the concern expressed in the Guideline about the current state of limited resources for Parkinson care, the Rehabilitation section could have been strengthened. As it now appears in the Guideline, this section is practically lost in the 2.5 pages of detailed accounting of the evidence for various pharmacological options. Because a range of movement-based therapies (physio exercises, dance, dance movement therapy, LSVT Big and Loud, etc.) are widely available at low cost, with few side effects, it would make sense to highlight more clearly the recommendation of these interventions as one of the first lines of treatment.

4. On the visual summaries (page E991) can be seen as quite misleading and potentially discouraging to the target audience. If read alone they focus on negative and often misunderstood aspects of Parkinson’s. The ending statement that ‘No therapies are effective for slowing or stopping brain degeneration in Parkinson disease’ may leave readers with a sense of hopelessness. I question this statement having such a prominent place. The image of a dark and rounded silhouette is complimented by the headline of palliative care, a stethoscope and even the one image of a person in exercise or stretch has a pill sharing the image box.

5. The panel of experts taking part in the discussions and development of guidelines is impressive. But, it would be valuable to include non-medical practitioners, movement-based therapists and representatives of the patient population itself. In our classes of movement and dance there are physicians, psychologists, educators, lawyers, performers and others. These people could have been called upon to testify in their role of professionals and people living with Parkinson’s to contribute to the development of these guidelines.

Thank you again for this important collaborative update on PD.

Joanabbey Sack

References

1. Batson, G., Migliarese, S. J., Soriano, C., H. Burdette, J., & Laurienti, P. J. (2014). Effects of Improvisational Dance on Balance in Parkinson's Disease: A Two-Phase fMRI Case Study. Physical & Occupational Therapy In Geriatrics, 32(3), 188-197. doi:10.3109/02703181.2014.927946

2. Batson G. (2010) Feasibility of an intensive trial of modern dance for adults with Parkinson disease. Complementary Health Practice Review15: 65. doi: 10.1177/1533210110383903

3. Chaudhary, S., Joshi, D., Pathak, A., Mishra, V. N., Chaurasia, R. N., & Gupta, G. (2018). Comparison of Cognitive Profile in Young- and Late-onset Parkinson's Disease Patients. Ann Indian Acad Neurol, 21(2), 130-132. doi:10.4103/aian.AIAN_262_17

4. Duncan, R. P., & Earhart, G. M. (2012). Randomized controlled trial of community-based dancing to modify disease progression in Parkinson's disease. Neurorehabilitation and Neural Repair, 26 (2), 132-143.

5. Earhart, G. M. (2009). Dance as therapy for individuals with Parkinson disease. Eur J Phys Rehabil Med, 45(2), 231-238. Earhart, G. M. (2009). Dance as therapy for individuals withParkinson's disease. European Journal of Physical and Rehabilitation Medicine, 45(2), 231-238.

6. Farley, B. G., Fox, C. M., Ramig, L. O., & McFarland, D. (2008). Intensive amplitude-specific therapeutic approaches for Parkinson disease: Toward a neuroplasticity-principled rehabilitation model. Topics in Geriatric Rehabilitation, 24(2), 99-114. doi:10.1097/01.tgr.0000318898.87690.0d

7. Foster, E. R., Golden, L., Duncan, R. P., & Earhart, G. M. (2013). Community-based Argentine tango dance program is associated with increased activity participation among individuals with Parkinson's disease. Arch Phys Med Rehabil, 94(2), 240-249. doi:10.1016/j.apmr.2012.07.028

8. Goodwin, V. A., Richards, S. H., Taylor, R. S., Taylor, A. H., & Campbell, J. L. (2008). The effectiveness of exercise interventions for people with Parkinson's disease: a systematic review and meta-analysis. Mov Disord, 23(5), 631-640. doi:10.1002/mds.21922

9. Hackney, M. E., & Earhart, G. M. (2009). Effects of dance on movement control in Parkinson's disease: a comparison of Argentine tango and American ballroom. J Rehabil Med, 41(6), 475-481. doi:10.2340/16501977-0362

10. Homann, K. B. (2010). Embodied Concepts of Neurobiology in Dance/Movement Therapy Practice. American Journal of Dance Therapy, 32(2), 80-99. doi:10.1007/s10465-010-9099-6

11. Kalyani, H. H. N., Sullivan, K. A., Moyle, G., Brauer, S., Jeffrey, E. R., & Kerr, G. K. (2019). Impacts of dance on cognition, psychological symptoms and quality of life in Parkinson's disease. NeuroRehabilitation, 45(2), 273-283. doi:10.3233/nre-192788

12. Mendrek A. (2019) From depression to Parkinson's disease: The healing power of dance the conversation.com › from-depression-to-parkinsons-disease-the-healing-... Dec 4, 2019 https://theconversation.com/from-depression-to-parkinsons-disease-the-he...

13. Prewitt, C. M., Charpentier, J. C., Brosky, J. A., & Urbscheit, N. L. (2017). Effects of Dance Classes on Cognition, Depression, and Self-Efficacy in Parkinson’s Disease. American Journal of Dance Therapy, 39(1), 126-141. doi:10.1007/s10465-017-9242-8

14. Stevens, C., & McKechnie, S. (2005). Thinking in action: thought made visible in contemporary dance. Cogn Process, 6(4), 243-252.