2018 HSP Patients Work Out Together

Twenty-eight Hereditary Spastic Paraplegia (HSP) patients and their families learned how to strengthen their muscles by working out at an event initiated by President Gu Yun-sung of the Taiwan Foundation for Rare Disorders (TFRD) on July 28.

At the beginning of the event, Mrs. Serena C. Wu, the founder of the TFRD, showed up to cheer everyone up and showed her care for the patients' conditions.

In the morning session, instructor Jing-Yao explained how to use physical rehab in daily life.

Jing-Yao pointed out that HSP patients tend to suffer from scissor gait due to leg cramps and hypertonia, and thus physical training is necessary to prevent degeneration.

Jing-Yao later focused on pelvic, core, and upper and lower body exercises, cool downs and many more that can be done at home.

Patients could choose suitable movement patterns according to their conditions.

During lunchtime, HSP patient A-Rong, who has learned wheelchair dancing for ten years, performed an impressive three-minute dance.

In the afternoon, instructor Shao taught everyone how to play boccia, a sport that HSP patients can fully participate in.

The sort involves coordinating arm, wrist, hand and finger movements to control the landing point and the speed, distance and direction of the rolling ball.

The most important rule in boccia is that the participant must sit in a wheelchair and complete every throw inside the designated area.

People without disabilities would need to overcome the inertia of their body to score.

A-Xun with strong muscle tension in his limbs was able to complete three throws after the instructor and his family helped him adjust the posture and ease twitching.

The 1.5-hour event not only strengthened the participants’ core muscles but also helped them acquaint with each other through teamwork.

Translator: Jonathan Wilson (Bruton disease), Reviewer: Alex Chiang