Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions.

NARRATIVE SUMMARY: The formation of a patient-reported outcomes registry to provide information about functional changes and pain among adults with cerebral palsy (CP) was identified as a priority to address the gap in knowledge and practice about aging and CP. The Cerebral Palsy Research Network collaborated with consumers, clinicians, and researchers to create an interactive internet platform, MyCP, to host a Community Registry. MyCP also provides educational programming, access to webinars and community forums, and fitness opportunities. The registry hosts surveys on function and pain for adults with CP, which provide cross-sectional and longitudinal data about these important issues. Surveys include previously validated measures with normative values that have been used with other populations and investigator developed questions. Enrollment in the registry is growing but needs to reflect the population of adults with CP, which limits generalizability. Future initiatives involve strategies to increase consumer engagement and enrollment.

Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Adults with cerebral palsy (CP) have unique healthcare needs and risks, including high risk of functional decline. Understanding functional decline is an area of priority for CP research. OBJECTIVE: Describe factors associated with patient-reported changes in function among adults with CP living in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the CP Research Network (CPRN) Community Registry. RESULTS: Participants included 263 respondents (76% female (n = 200); mean age 42 years (SD 14); 95% White (n = 249); 92% non-Hispanic (n = 241)). Many reported functional changes, most commonly a decline in gross motor function since childhood (n = 158, 60%). Prevalence of gross motor decline varied significantly by Gross Motor Function Classification System (GMFCS) level (p < 0.001), but neither hand function decline (p = 0.196) nor communication decline (p = 0.994) differed by GMFCS. All types of decline increased with increasing age, with statistically significant differences between age groups (p < 0.001 gross motor; p = 0.003 hand function; p = 0.004 communication). Those with spastic CP (n = 178) most commonly reported gross motor functional decline (n = 108/178, 60.7%). However, the prevalence of gross motor decline did not significantly differ between those with spastic CP and those without spastic CP (p = 0.789). CONCLUSIONS: Many adults in the CPRN Community Registry reported functional decline, most commonly in gross motor function. Functional decline across domains increased with age. Further research into risk stratification and preventive and rehabilitative measures is needed to address functional decline across the lifespan.

Social Model Hospice: Providing Hospice and Palliative Care for a Homeless Population in Salt Lake City, Utah.

Health care for the homeless population is a complex challenge and represents a significant gap in care, particularly for those at the end of life. Hospice care may be desired but is rarely an option for people without residences, social support, and payment sources. Social model hospice is a unique paradigm of care delivery that offers a viable solution to make hospice and palliative care possible for this population. In this historical report from interviews with early organizers, prior and current leadership (n = 6), the evolution of The INN Between in Salt Lake City, Utah, is described. In 2010, The INN Between was conceptualized as a nonprofit community effort addressing this need to provide an alternative to people dying unsheltered. After 5 years of planning, it opened in 2015 and has grown to become a comprehensive community resource for homeless medically frail and terminally ill individuals. Recommendations for establishing social model hospices are made: key strategies include identifying stakeholders dedicated to alleviating end-of-life homelessness needs, doing a formal needs assessment to identify community resource deficits, and forming mentoring relationships with established programs. Social model hospice is a viable way of meeting the end-of-life needs of many communities' most vulnerable residents.

A Feasibility Study of a Physical and Occupational Therapy-Led and Parent-Administered Program to Improve Parent Mental Health and Infant Development.

AIMS: Extremely premature birth puts infants at high risk for developmental delay and results in parent anxiety and depression. The primary objective of this study was to characterize feasibility and acceptability of a therapist-led, parent-administered therapy and massage program designed to support parent mental health and infant development. METHODS: A single cohort of 25 dyads - parents (24 mothers, 1 father) and extremely preterm (<28 wk gestation) infants - participated in the intervention. During hospitalization, parents attended weekly hands-on education sessions with a primary therapist. Parents received bi-weekly developmental support emails for 12 months post-discharge and were scheduled for 2 outpatient follow up visits. We collected measures of parent anxiety, depression, and competence at baseline, hospital discharge, and <4 and 12 months post-discharge. RESULTS: All feasibility targets were met or exceeded at baseline and discharge (≥70%). Dyads participated in an average of 11 therapy sessions (range, 5-20) during hospitalization. Lower rates of data collection adherence were observed over successive follow ups (range, 40-76%). Parent-rated feasibility and acceptability scores were high at all time points. CONCLUSIONS: Results support parent-rated feasibility and acceptability of the TEMPO intervention for extremely preterm infants and their parents in the Neonatal Intensive Care Unit.

Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Chronic pain is common among adults with cerebral palsy (CP) and an area of priority for research and treatment. OBJECTIVE: Describe the pain experience and its functional and quality of life impact among adults with CP with chronic pain in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the Cerebral Palsy Research Network Community Registry. RESULTS: Among all participants in the Community Registry, n = 205 reported having chronic pain, and 73 % of those (n = 149) completed the Chronic Pain Survey Bundle (75 % female; mean age 43 years (SD 14 years); 94 % White; 91 % non-Hispanic). Back and weight-bearing joints of lower extremities were most frequently reported as painful. There were no differences in average pain severity scores between varying GMFCS levels (H = 6.25, p = 0.18) and age groups (H = 3.20, p = 0.36). Several nonpharmacologic interventions were most frequently reported as beneficial. Participants with moderate to severe average pain scores (5-10) had higher levels of pain interference (p < 0.01) and depression (p < 0.01), and lower levels of satisfaction with social roles (p < 0.01) and lower extremity function (p < 0.01). Pain interference was significantly positively correlated with depression, and negatively correlated with upper and lower extremity function and satisfaction with social roles. CONCLUSIONS: Chronic pain is experienced by adults with CP of varying ages and functional levels and is associated with several adverse quality of life and functional outcomes. Improved understanding of chronic pain in this population will facilitate the development and study of treatment interventions optimizing health, function, participation, and quality of life.

Corticomuscular Coherence in Children with Unilateral Cerebral Palsy: A Feasibility and Preliminary Protocol Study.

Objective This study assessed the feasibility of corticomuscular coherence measurement during a goal-directed task in children with unilateral cerebral palsy while establishing optimal experimental parameters. Methods Participants (Manual Ability Classification System levels I-III) completed a submaximal isometric goal-directed grip task during simultaneous electroencephalography and electromyography (EMG) acquisition. Results All participants (n = 11, 6 females, mean age 11.3 ±2.4 years) completed corticomuscular coherence procedures. Of the 40 trials obtained per extremity, an average of 29 (n = 9) and 27 (n = 10) trials were retained from the more- and less-affected extremities, respectively. Obtaining measurement stability required an average of 28 trials per extremity. Conclusion Findings from this work support the feasibility of corticomuscular coherence measurement in children with unilateral cerebral palsy. Acquiring 28 to 40 corticomuscular coherence trials per extremity is ideal. The experimental parameters established in this work will inform future corticomuscular coherence application in pediatric unilateral cerebral palsy.

An international clinical perspective on functioning and disability in adults with cerebral palsy.

BACKGROUND: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health. OBJECTIVE: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference. METHODS: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis. RESULTS: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors. CONCLUSIONS: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP.

Characteristics of Interventions to Improve Bone Health in Children With Cerebral Palsy: A Systematic Review.

PURPOSE: A systematic review evaluated exercise parameters and ages that produced the most improvement in bone among individuals with cerebral palsy (CP) ages 3 to 21 years. METHODS: PubMed, Scopus, Ebscohost, and Web of Science identified potential articles. Covidence was used to identify eligible citations and assess bias. The osteogenic index (OI) was used to evaluate intervention parameters. RESULTS: The database search identified 312 citations. Twelve full-text articles were included. A 1-hour calisthenic exercise program performed 2 to 3 times a week for 8 months targeting each body region had the highest effect size and a substantial OI. Most of the interventions reviewed had low OIs. Activities of longer duration and greater intensity had greater OIs and prepubertal age-enhanced treatment effects. CONCLUSION: Bone interventions for individuals with CP have low OIs, and principles of mechanostat theory should be applied to exercise dosing.

ICF Core Sets for the assessment of functioning of adults with cerebral palsy.

AIM: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP). METHOD: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. RESULTS: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies. INTERPRETATION: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.

Blood pressure in adults with cerebral palsy: a systematic review and meta-analysis of individual participant data.

OBJECTIVES: This systematic review and meta-analysis was designed to determine the overall mean blood pressure and prevalence of hypertension among a representative sample of adults living with cerebral palsy by combining individual participant data. Additional objectives included estimating variations between subgroups and investigating potential risk factors for hypertension. METHODS: Potential datasets were identified by literature searches for studies published between January 2000 and November 2017 and by experts in the field. Samples of adults with cerebral palsy (n ≥ 10, age ≥ 18 years) were included if blood pressure data, cerebral palsy-related factors (e.g. cerebral palsy subtype), and sociodemographic variables (e.g. age, sex) were available. Hypertension was defined as at least 140/90 mmHg and/or use of antihypertensive medication. RESULTS: We included data from 11 international cohorts representing 444 adults with cerebral palsy [median (IQR) age of the sample was 29.0 (23.0-38.0); 51% men; 89% spastic type; Gross Motor Function Classification System levels I-V]. Overall mean SBP was 124.9 mmHg [95% confidence interval (CI) 121.7-128.1] and overall mean DBP was 79.9 mmHg (95% CI 77.2-82.5). Overall prevalence of hypertension was 28.7% (95% CI 18.8-39.8%). Subgroup analysis indicated higher blood pressure levels or higher prevalence of hypertension in adults with cerebral palsy above 40 years of age, men, those with spastic cerebral palsy or those who lived in Africa. BMI, resting heart rate and alcohol consumption were risk factors that were associated with blood pressure or hypertension. CONCLUSION: Our findings underscore the importance of clinical screening for blood pressure in individuals with cerebral palsy beginning in young adulthood.

Musculoskeletal diagnoses, comorbidities, and physical and occupational therapy use among older adults with and without cerebral palsy.

BACKGROUND: Musculoskeletal (MSK) disorder in adults with cerebral palsy (CP) is higher than in the general population. Evidence lacks about physical therapy (PT) and occupational therapy (OT) service utilization among older adults (65> years) living with CP. OBJECTIVE: We compared the presence of comorbidities and patterns of PT and OT use among older adults with and without CP seeking care for MSK disorders. METHODS: A 20% national sample of Medicare claims data (2011-2014) identified community-living older adults with (n = 8796) and without CP (n = 5,613,384) with one or more ambulatory claims for MSK diagnoses. The sample matched one CP case to two non-CP cases per year on MSK diagnoses, age, sex, race, dual eligibility, and census region. Exposure variable was the presence/absence of a CP diagnosis. Outcomes were use of PT and OT services identified via CPT and revenue center codes, and the presence/absence of Elixhauser comorbidities. RESULTS: In older adults with MSK diagnoses, less than a third regularly utilized PT and/or OT services, and adults with CP utilized significantly less PT than adults without CP, and for some MSK diagnoses had fewer visits than their matched peers. Older adults with CP were at greater risk for secondary conditions that influence morbidity, mortality, and quality of life compared to their age-matched peers without CP. CONCLUSIONS: Older adults with CP and MSK diagnoses had a greater prevalence of numerous comorbidities and lower use of PT services relative to their non-CP peers.

Lack of Abdominal Stability and Control as a Possible Contributor to Rectus Femoris Avulsion Fracture in the Adolescent Soccer Player: A Case Report.

PURPOSE: To describe evaluation and physical therapy treatment for an athlete who is male and 13 years old with healing bilateral rectus femoris avulsion fractures. SUMMARY OF KEY POINTS: Fractures of the anterior inferior iliac spine may be linked to poor abdominal stability in soccer athletes who are male and an adolescent. The development and use of an abdominal stability screening tool could be an efficient and effective way to determine fracture risk and guide prevention programs. CONCLUSIONS AND RECOMMENDATIONS FOR CLINICAL PRACTICE: Following 8 weeks of conservative physical therapy treatment, the athlete met all goals and returned to pain-free soccer activities without residual impairments. Four months following discharge, he reported full participation in soccer competition without complications. This case illustrates that abdominal weakness is a potential risk factor for anterior inferior iliac spine avulsion fracture. Screening for abdominal weakness and incorporating preventative programs into training regimens is recommended to prevent anterior inferior iliac spine injuries in this population.

Pain in adults with cerebral palsy: A systematic review and meta-analysis of individual participant data.

BACKGROUND: There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population. OBJECTIVES: This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence of subgroups, pain locations, pain severity and pain interference. METHODS: Potential datasets were identified by experts in the field and literature searches in Embase, MEDLINE, and Cochrane, from January 2000 to October 2016. Included studies had a representative sample of ≥25 adults with CP and ≥1 pain outcomes. Methodological quality assessment, pain prevalence estimates and logistic regression models for subgroup effects on pain prevalence were conducted. RESULTS: In total, 17 eligible studies were identified from 4584 publications. A meta-analysis was performed with individual participant data from 15 studies totalling 1243 participants (mean [SD] age 34.3 [12.6] years). Overall mean pain prevalence was 70% (95% CI 62-78). Women were more likely to have pain than men (P<0.001). The odds of pain was increased in adults with gross motor function level II (odds ratio [OR] 1.92, 95% CI 1.22-3.12) and IV (OR 1.77, 95% CI 1.03-4.29). Participants with pain reported pain predominantly in the legs (76%, 95% CI 66-84), and mean pain severity was 3.7/10 (95% CI 2.7-4.7) and pain interference 3.5/10 (95% CI 2.5-4.5). CONCLUSIONS: This meta-analysis provides the first reliable pain prevalence estimate in a large international sample of adults with CP. The high prevalence of pain, 70%, suggests that adults with CP should be routinely screened for pain and treated accordingly. The range of measurement instruments used by the included studies emphasizes using common outcome measures specific to pain internationally.

Designing Exercise to Improve Bone Health Among Individuals With Cerebral Palsy.

PURPOSE: Individuals with cerebral palsy (CP), ambulatory or not, have less bone strength and density than their peers. Aging individuals with CP are at a higher risk for nontraumatic fractures, progressive deformity, pain, and spinal stenosis. Critical periods for skeletal formation are during prepuberty and adolescence. Applying mechanostat theory to exercise design for individuals with CP may be beneficial. METHODS: Principles of mechanostat theory, particularly the osteogenic index, is applied to guide the design of exercise programs based on varying levels of physical capacity. RESULTS: Recommendations are made for optimizing dosing of a variety of interventions for improving bone health among individuals with CP based on mechanostat theory with specific type, number of repetitions, and frequency. CONCLUSIONS: Researchers and clinicians are called to action to consider the role of exercise throughout the lifespan for all individuals with CP, regardless of level of severity.

A Life Course Perspective on Growing Older With Cerebral Palsy.

Despite most children with cerebral palsy (CP) now living within typical life spans, little is known about how the effects of CP unfold across the life course and impact participation in everyday life during adulthood. In this study, we explored the experiences of 38 adults growing older with CP. Data were gathered using semi-structured interviews focused on participants' engagement in activities in their community and analyzed using a life course perspective to deepen our understanding of the experiences of our participants. We found that individual agency, family and social contexts, as well as larger sociocultural contexts all shaped participants' experiences as they grew older. The findings highlight the usefulness of the life course perspective for understanding how the effects of a diagnosis of CP unfold over time. Further use of this perspective can better inform health care services to meet the needs of adults with CP aging with a lifelong disability.

ONS Guidelines™ for Opioid-Induced and Non-Opioid-Related Cancer Constipation.

PURPOSE: This evidence-based guideline intends to support clinicians, patients, and others in decisions regarding the treatment of constipation in patients with cancer. METHODOLOGIC APPROACH: An interprofessional panel of healthcare professionals with patient representation prioritized clinical questions and patient outcomes for the management of cancer-related constipation. Systematic reviews of the literature were conducted. The GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach was used to assess the evidence and make recommendations. FINDINGS: The panel agreed on 13 recommendations for the management of opioid-induced and non-opioid-related constipation in patients with cancer. IMPLICATIONS FOR NURSING: The panel conditionally recommended a bowel regimen in addition to lifestyle education as first-line treatment for constipation. For patients starting opioids, the panel suggests a bowel regimen as prophylaxis. Pharmaceutical interventions are available and recommended if a bowel regimen has failed. Acupuncture and electroacupuncture for non-opioid-related constipation are recommended in the context of a clinical trial. SUPPLEMENTARY MATERIAL CAN BE FOUND AT&NBSP;HTTPS: //bit.ly/30y29sI.

Health at the writing desk of John Ruskin: a study of handwriting and illness.

Though John Ruskin (1819-1900) is remembered principally for his work as a theorist, art critic and historian of visual culture, he wrote exhaustively about his health in his correspondence and diaries. Ruskin was prone to recurring depressive and hypochondriacal feelings in his youth and adulthood. In 1871, at the age of 52 years, he developed an illness with relapsing psychiatric and neurological features. He had a series of attacks of brain disturbance, and a deterioration of his mental faculties affected his writing for years before curtailing his career a decade before he died. Previous writers have suggested he had a psychiatric malady, perhaps schizophrenia or schizoaffective disorder. But the more obvious conclusion from a close medical reading of Ruskin's descriptions of his illness is he had some sort of 'organic' brain illness. This paper aims to give insight into the relationship between Ruskin's state of well-being and the features of his writing through a palaeographical study of his letters and diary entries. We examine the handwriting for physical traces of Ruskin's major brain illness, guided by the historical narrative of the illness. We also examine Ruskin's recording of his experiences for what they reveal about the failure of his health and its impact on his work. Ruskin's handwriting does not have clear-cut pathological features before around 1885, though suggestions of subtle writing deficits were present as early as 1876. After 1887, Ruskin's handwriting shows fixed pathological signs-tremor, disturbed letter formation and features that reflect a slow and laborious process of writing. These observations are more than could be explained by normal ageing, and suggest the presence of a neurological deficit affecting writing control. Our findings are consistent with conclusions that we drew from the historical record-that John Ruskin had an organic neurological disorder with cognitive, behavioural, psychiatric and motor effects.

Novel approaches to measuring community integration in adults with cerebral palsy.

Purpose: Rehabilitation goals often focus on increasing community integration for adults with disabilities and are measured by objective assessments. Research methods have lagged behind in capturing current conceptualizations of community integration as a multidimensional construct that incorporates participation, social supports, and feelings of belonging in the community. This paper addresses this challenge by describing a multi-method approach to assessing community integration for adults with cerebral palsy.Methods: Measures include standardized questionnaires, qualitative methods, measures of function and physical activity, and geospatial measures using Geographic Information System mapping and Global Positioning System tracking. These objective and subjective data are used to determine where adults spend time and are most active, and which activities and social connections are associated with feeling integrated into the community.Results: Two case examples highlight the importance of using a multi-method approach to assess community integration for adults with cerebral palsy. Results of objective clinical measures were comparable among case examples; however, actual experiences of feeling connected to the community were vastly different.Conclusions: Multiple measures are required to capture the complexity of community integration. Relying solely on objective measures may not provide a complete picture of community integration.IMPLICATIONS FOR REHABILITATIONCommunity integration is a complex construct that incorporates participation, socialization, and feelings of belonging in the community.New methods and measures are needed to assess the many aspects of community integration in adults with disabilities.A multi-method approach is recommended to provide a richer characterization of community integration in individuals with disabilities.A combination of quantitative and qualitative measures addressing the physical, social and psychological aspects of community integration should be used.

Test-retest reliability and minimal detectable change for measures of balance and gait in adults with cerebral palsy.

BACKGROUND: Walking and balance often begin to deteriorate in ambulant adults with cerebral palsy (CP) in early adulthood. The decline in walking and balance imposes a more sedentary lifestyle, increases falls risk, negatively affects health, participation, and quality of life, and ultimately results in increased disability. Available research is not sufficient to guide interventions to improve walking and balance in this population. To advance research in this area, there is a need for measures of gait and balance with proven psychometrics for adults with CP. RESEARCH QUESTION: The goal of this study was to determine test-retest reliability and minimal detectable change (MDC) values and to assess score distribution for the Balance Evaluation Systems Test (BESTest) and the Four Square Step Test (FSST) as measures of balance, for the Activities-specific Balance Confidence (ABC) Scale and the Modified Fall Efficacy Scale (MFES) as measures of balance confidence, and for over-ground spatiotemporal gait parameters at comfortable gait speed (CGS) and fast gait speed (FGS). METHODS: Twenty ambulant adults with CP (mean age 32.7 years), GMFCS-E&R Levels I and II, were tested twice within an average of 10 days. Test-retest reliability was evaluated using intra-class correlation coefficients (ICC2,1), and MDC95 values were calculated using standard error of measurement values. RESULTS: The test-retest reliability of most outcome measures was good to excellent. ICC values were: BESTest = 0.99, BESTest sections 0.88 to 0.98, FSST = 0.91, ABC=0.86, MFES = 0.9, CGS = 0.88, and FGS = 0.98. MDC values were: BESTest total = 4.9%, BESTest sections 8.7%-21.2%, FSST = 3.7 s, ABC = 18%, MFES = 1 point, CGS = 0.26 m/s, and FGS = 0.14 m/s. Most outcome scores were broadly distributed over scales ranges. SIGNIFICANCE: Adults with CP demonstrated stable test-retest performance on the selected measures. These measures could be useful to assess balance and gait of adults with CP. The MDC values can help evaluate whether observed changes exceed the expected random test-retest variations.

A History of Dystonia: Ancient to Modern.

Before 1911, when Hermann Oppenheim introduced the term dystonia, this movement disorder lacked a unifying descriptor. While words like epilepsy, apoplexy, and palsy have had their meanings since antiquity, references to dystonia are much harder to identify in historical documents. Torticollis is an exception, although there is difficulty distinguishing dystonic torticollis from congenital muscular torticollis. There are, nevertheless, possible representations of dystonia in literature and visual art from the pre-modern world. Eighteenth century systematic nosologists such as Linnaeus, de Sauvages, and Cullen had attempted to classify some spasmodic conditions, including torticollis. But only after Charcot's contributions to clinical neuroscience were the various forms of generalized and focal dystonia clearly delineated. They were categorized as névroses: Charcot's term for conditions without an identifiable neuroanatomical cause. For a time thereafter, psychoanalytic models of dystonia based on Freud's ideas about unconscious conflicts transduced into physical symptoms were ascendant, although there was always a dissenting "organic" school. With the rise of subspecialization in movement disorders during the 1970s, the pendulum swung strongly back toward organic causation. David Marsden's clinical and electrophysiological research on the adult-onset focal dystonias was particularly important in establishing a physical basis for these disorders. We are still in a period of "living history" of dystonia, with much yet to be understood about pathophysiology. Rigidly dualistic models have crumbled in the face of evidence of electrophysiological and psychopathological overlap between organic and functional dystonia. More flexible biopsychosocial frameworks may address the demand for new diagnostic and therapeutic rationales.