Community-based rehabilitation for Parkinson's disease: From neurons to neighborhoods

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Summary

This paper describes a model for developing early, community-based exercise interventions for people with Parkinson's disease (PD). The model being described is novel in that it advocates collaborative development of the program by multiple stakeholders (i.e., researchers, people with Parkinson's disease, caregivers, Parkinson's associations and healthcare providers), utilizing a community-based participatory research (CBPR) approach, and peer-to-peer training by caregivers and person's with PD. Opportunities and challenges of creating community-based exercise programs are discussed.

Introduction

Scholars agree that “more has been learned in the past 10 years about nerve cell recovery from injury than in the past 10 centuries” [1]. It is certainly true that exciting advances have been made in the neuroscience of rehabilitation. We are closer to understanding the molecular and behavioral mechanisms underlying exercise-induced neuroplasticity and are possibly approaching a paradigm shift how exercise is used as a physiologic tool to treat individuals with Parkinson's disease PD [2]. Animal models of PD and exercise now suggest intense sensorimotor training (a) triggers behavioral and biochemical recovery, (b) slows the disease progression and motor deterioration, (c) may be prophylactic (capable of protecting dopaminergic neurons and metabolites from toxic events), while (d) leading a sedentary lifestyle (inactivity) or stress may reverse the positive effects of exercise on the pathophysiology of the disease [3]. This evidence is beginning to be corroborated by high intensity studies with human PD [4, 5, 6, 7, 8]. These data suggest individuals at all stages of PD, who do not display contraindications to exercise, should be encouraged to exercise [9].

People with PD are more vulnerable to adopting a less physically active lifestyle after diagnosis than other populations so encouraging an active lifestyle at diagnosis is particularly important in PD. In PD sedentary lifestyles trigger functional impairments and an increased mortality rate [10, 11]. The reasons why people with PD do not exercise are not understood and many questions remain. Do reduced physical activity (PA) levels precede the PD diagnosis or are they a result of basal ganglia pathology? To what extent do environmental factors – such as lack of opportunity to exercise – result in reduced exercise participation? If persons with PD and caregivers were more aware of the benefits of exercise and physicians began referring patients to exercise right after diagnosis, would this increase exercise participation? Difficulty with daily activities, walking and transferring are reported by patients at the early stages of the disease and the frequency of these reports increases with advancing disease and co-morbidities [12, 13]. However, only a fraction of patients (34%, according to one study) are prescribed physical therapy or medication for PD within the first 6 months after initial PD diagnosis [14]. The animal data would suggest that failure to begin a high-intensity exercise program early after diagnosis or failure to exercise continuously are lost windows of opportunity.

People with PD could try to find opportunities to exercise in their community. However evidence suggests individuals with PD have difficulty accessing and participating in recreational and leisure activities in their community [15]. Data from a recent nationwide telephone poll on PA patterns among 197 persons with early to mid stage PD suggest less than 1% of persons with PD exercise at a community-based fitness facility (e.g., YMCA) while 87% of respondents reported they would be more likely to participate in regular exercise if they had access to a community-based PD exercise program [16].

Section snippets

Creating neuroplasticity- and evidence-based programs

A goal to strive for is to create evidence-based exercise programs that cater to the needs of all individuals with PD. Many PD exercise programs are on the market and some have not been tested scientifically for efficacy. There is also considerable debate about what constitutes efficacious treatment and no consensus on the best mode, intensity or duration of exercise. Components of a PD exercise program could include education on the disease itself, general conditioning and impairment specific

Train-the-PD-trainer

The many needs of caregivers are rarely acknowledged in the literature on caregiving in PD and caregivers are rarely directly involved in providing exercise or physical therapy. Traditionally, this has been the domain of physical therapists. However, according to one study [16], nearly 90% of caregivers of persons with PD would be interested in exercising along with their partner if an exercise program for PD were available in their community. This is information that is key to developing

Future directions

Accelerating the translation of medical research into the community is one of the central themes of the Obama administration healthcare reform. A variety of challenges must be overcome, including limited research on community-based exercise and PD, limited services directed to the needs of the PD community, and limited participation by communities in translating research into clinical practice.

In response to this situation, the US Department of Health and Human Services (DHHS) issued the

Conflict of interests

None declared.

Acknowledgements

I would like to dedicate this paper in memory of my father, Helmut Hirsch, who began exercising at age 78 at a community fitness facility and continued daily exercise until he reached 100 years of age, and to my mentors, Tonya Toole, PhD and Robert A. Rider, PhD. This work was partially supported by a community participation in research grant from the National Institutes of Health, #HD055202-01. I would also like to express appreciation to Becky G. Farley, PhD, PT for her collegiality, insights

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