113 Summary and general discussion unpredictable. Therefore, people with HSP generally focus on maintaining their current level of functioning rather than expecting improvements. 37 When setting goals for specific training interventions, it is important to define individual goals while taking into account personal factors. These include possible cognitive impairments that may limit realistic disease perception, particularly in people with complex forms of HSP, or false expectations due to mirroring their rate of disease progression to that of others (e.g., family members with HSP). Lifestyle interventions In addition to the three requirements for purposeful walking, a sufficient level of physical fitness is required to engage in daily life activities. Remarkably, a recent survey reported that only 25% of people with HSP reach recommended daily physical activity levels. 38,39 In line with these results, we found that people with HSP were physically active (defined as walking or cycling) for only 9% of the day (24 hours). Furthermore, we showed an association between reduced physical activity levels and the perceived aggravation of several spasticity-related symptoms (Chapter 2). These results are in line with the study by Lallemant-Dudek and co-workers, in which people with HSP perceived a reduction in lower extremity spasticity with regular physical activity and physical therapy. 38 Independent of disease severity, most benefits were experienced with physical therapy three times a week. 38 Unfortunately, this study did not report on the content of the physical therapy provided. Moreover, it is possible that the supervision of a physical therapist who encouraged people with HSP to be physically active contributed to the perceived benefits. Apart from physiotherapy-based physical activity and training, a general lifestyle intervention may encourage people with HSP to maintain a proper level of physical activity. There is ample evidence that a passive, sedentary lifestyle aggravates sensorimotor problems in various neurological conditions. 40-45 There is also growing evidence for the fact that an active lifestyle and physical training slows down the natural progression in specific neurological diseases, such as Parkinson’s disease46 and dementia47. Likewise, an active lifestyle may ameliorate gait and balance impairments in people with HSP, as well as spasticity-related symptoms such as pain, fatigue, and restless legs (Chapter 2). In practice, it is neither feasible nor desirable to propose that all people with HSP receive physical therapy three times a week. Therefore, evaluating alternatives to encourage people with HSP to stay physically active is key. Above, I already discussed the potential of home-based interventions for people with HSP. In people with Parkinson’s disease, a home-based and remotely supervised intervention, consisting of aerobic exercises on a home trainer for 30-45 minutes three times a week, was found to be safe and increase physical activity. 46 The challenge for future studies in HSP will be to prove feasibility, efficacy and safety in this population as well, but – from a theoretical point of view – few arguments 7
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