Richa Kulshrestha
Robert Jones and Agnes Hunt Orthopedic Hospital, UK
Title: Upper Limb rehabilitation in Facioscapulohumeral Dystrophy (FSHD) patients
Biography:
Kulshrestha works at a centre of excellence for neuromuscular disorders in the UK. She and her team of doctors, physiotherapists and sports scientist are committed to provide innovative methods of rehabilitation of untreatable conditions. This project has the backing of patients and well received by FSHD charity, UK.
Abstract:
Statement of problem: FSHD sufferers live a long life with disability. Symptoms may develop in early childhood and weakness usually noticeable in the teenage years with 95% of affected individuals manifesting disease by age 20 years. The disorder impacts on the upper extremity and torso, impacting negatively on the muscle mass, shoulder mobility and functional tasks. Consequently chronic disuse of the shoulder negatively impacts independence of sufferers, prospects of employment and staying at work. At present there is no known cure and knowledge regarding the mechanisms underpinning FSHD is not sufficient to halt the progression of the disease via pharmacological interventions or gene therapy. Surgical interventions are used to improve scapular stabilisation but long term effect on disease progression is limited. Methodology and theoretical orientation: The aim of this exercise was to understand views of patients for compliance with exercise programmes and understand the barriers for regular exercise. This is followed by a pilot of testing arm cycling as potential rehabilitation method. Findings: We received 232 responses from the online survey. 92.6% responders are in agreement that upper limb exercise is necessary as upper limb dysfunction impacts daily living in 86.9% patients. Arm cycling was considered to be a feasible exercise by 57.1%. The focus group session echoed the need for home based exercise programme as attending a regular gymnasium was not entertained by patients. In this particular group of patients pain, fatigue and lack of motivation were additional barriers identified for compliance with exercise programmes. Pilot study of arm cycling showed that patients with different level of function were able to perform cycling at cadence and resistance to improve muscle function. Conclusion and significance: There is need for upper limb rehabilitation and arm cycling offers a potential method to enhance muscle function but its effectiveness is yet to be shown.