The grief in knowing you'll one day outlive your primary caregiver as a person with a physical disability

Rebecca Wilchynski is 48 years old and has been living with cerebral palsy her entire life. Now, as her mother, who has always served as her primary caregiver, faces medical issues of her own, she must decide if she will give up what independence she has and move to a long-term care facility.
Source: CBC | Health - Category: Consumer Health News Tags: News/Canada/PEI Source Type: news

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Conclusions: There is scarce and low-quality evidence on the measurement properties of instruments used to assess pain in individuals with cerebral palsy. Further research is needed designed in line with the COSMIN recommendations.Implications for rehabilitationThere is scarce and low-quality evidence on the measurement properties of instruments used to assess pain in individuals with cerebral palsy;Clinicians need to carefully choose instruments to assess pain in individuals with cerebral palsy as there is insufficient evidence on the quality of instruments;Self-report pain intensity scales may be a useful instrument for ...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
"People who say it cannot be done, should not interrupt those who are doing it." This quote by George Bernard Shaw was used as the title of an article about a severely disabled boy in Rwanda with cerebral palsy who made remarkable developmental gains after...
Source: SafetyLit - Category: International Medicine & Public Health Tags: Age: Adolescents Source Type: news
Study Design. Retrospective review. Objective. The aim of this study was to determine whether major postoperative complications (“complications”) are associated with 2-year improvements in Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) scores after scoliosis surgery, and whether complications and preoperative characteristics predict 2-year improvements in CPCHILD Total score. Summary of Background Data. Spinal arthrodesis can halt the progression of spinal deformity in patients with cerebral palsy (CP)-related scoliosis. However, these patients are prone to postoperative...
Source: Spine - Category: Orthopaedics Tags: DEFORMITY Source Type: research
CONCLUSION: Low anaerobic fitness and high physical strain values partly explain fatigue after walking in teenagers with cerebral palsy, but not in younger children. General fatigue was not explained by low fitness levels or high energy demands of walking. PMID: 32604360 [PubMed - as supplied by publisher]
Source: Physical Therapy - Category: Physiotherapy Authors: Tags: Pediatr Phys Ther Source Type: research
CONCLUSIONS: The main barriers identified by children with cerebral palsy highlight aspects of the physical, social, and attitudinal environment that could be modified to enhance participation in leisure activities. PMID: 32604358 [PubMed - as supplied by publisher]
Source: Physical Therapy - Category: Physiotherapy Authors: Tags: Pediatr Phys Ther Source Type: research
We report clinical and molecular data of a Lor family with 2 affected members presenting with severe intellectual disability, developmental delay, and generalized tonic-clonic seizures. A comprehensive genetic study that included whole-exome sequencing identified a homozygous missense substitution (NM_001080:c.G1321A:p.G441R) in ALDH5A1 (Aldehyde Dehydrogenase 5 Family Member A1) gene, consistent with clinical phenotype in the patients and co-segregating with the disease in the family. The non-synonymous mutation, p.G441R, affects a highly conserved amino acid residue, which is expected to cause a severe destabilization of...
Source: Gene - Category: Genetics & Stem Cells Authors: Tags: Gene Source Type: research
Abstract Purpose: To investigate the effectiveness of a practitioner-led, peer-group sports intervention for children with CP at GMFCS Level I-II.Method: Children with CP (GMFCS I-II; 6-12 years) were randomised to Sports Stars or waitlist-control groups. Sports Stars included eight-weeks (eight hours) of physiotherapist-led, sports-specific gross motor activity training, sports education, teamwork development and confidence building. Sports participation was measured using self-identified participation goals (modified Canadian Occupational Performance Measure (mCOPM)). Physical competence was measured with...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
Conclusion: This study identified possible delayed or sleeper effects in children's executive function and physical function and parent's well-being.Implications for rehabilitation6-month follow-up evidence for retention of effects of MiYoga on children's attention was inconsistent; therefore, booster sessions or continued practice of MiYoga as a lifestyle option are needed to maintain an effect on attention.Because MiYoga can be practised during daily activities, it may provide additional support for children with CP, complementing standard rehabilitation options.By embedding mindfulness in children and parents' daily act...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
In this study, we used a height adjustable chair and desk to investigate the role of desk support in STS and how it might benefit children with CP. Methods: Seventeen typically developing children (TDC), average age = 9.7 years, and 28 children with CP (Gross Motor Function Classification System [GMFCS] I and II), average age = 10.3 years, participated in the test. Elapsed time and body sway were measured using a pressure mat and load cell while each child performed a STS task. Two different desk heights were tested for time consumption and sway under the condition of hands-on-desk and arms-crossed. Results: ...
Source: Disability and Rehabilitation. Assistive Technology. - Category: Rehabilitation Authors: Tags: Disabil Rehabil Assist Technol Source Type: research
Abstract Intrauterine growth restriction (IUGR) is associated with poor perinatal prognosis and a higher risk of stillbirth, neonatal death, and cerebral palsy. Its detection and the evaluation of its severity by new Doppler velocimetric parameters, such as aortic isthmus (AoI), are of great relevance for obstetrical practice. The AoI is a vascular segment that represents a point of communication between the right and left fetal circulations. It is considered to be a functional arterial shunt that reflects the relationship between the systemic and cerebral impedances, and has recently been proposed as a tool to detect the ...
Source: Revista Brasileira de Ginecologia e Obstetricia - Category: OBGYN Source Type: research
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