Today was quite an intensive day, starting off with an interesting and interactive session led by Shubra -Sue- Mukherjee on transition and preparing the transfer to adult care. Sue and her colleagues Rebecca Boudos and Zaida Torres, working at the Children’s Memorial Hospital worked directly with the audience on how to prepare the transition, or better: the growing up of a child with Spina Bifida. She focussed on the development of the necessary skills and how to introduce that already early in life. Transition is a major topic during the conference.
(Dr. Sue Mukherjee, Mrs. Rebecca Boudos)
I was particularly looking forward to the second lecture. Dr. Adrian Sandler is the author of the book “Living with Spina Bifida” which can be considered a reliable guide (updated 2003). The Zimbabwan national is currently less involved with Spina Bifida as he has moved to a smaller town, but has yet a lot of experience to share. He gave a neutral overview of some alternative medicine practices people turn to and how Sensory Integration Dysfunction fits into this. This theory, developed primarily by Jean Ayres, neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). She has worked on therapies for the disorder. Dr. Sandler’s lecture evolved to an open discussion on the practice of these often unproven treatments and the comparison to placebo treatments.
(Dr. Adrian Sandler)
One of the most popular sessions, or should we say “three of the most popular sessions”, is the “ASK THE DOCTOR” session. This year, the topics were: urologic care, neurosurgery and orthopedics.
Thirdly, Dr. John Wiener gave an overview on the available treatments of neurogenic bladder. He focused on non-surgical treatment.
Last session of the day was by Julie Yindra, who also presented at the IF conference in Portugal, on the same topic, but three times as long. Mrs Yindra is a born motivator and a well known personality in the Spina Bifida Association. She works as director of disability services at the Greensboro college. Her presentation was on how to optimize the potential for independence through a personal action plan, based on the individual’s strengths and weaknesses.
