Lori is a physiotherapist and Director of the Neurorehabilitation Research Lab at Teachers College, Columbia University. She discussed the challenges that patients and carers encounter when trying to find physiotherapy due to the scarcity of information on neuroacanthocytosis syndromes. Physios can draw on exercises and treatment plans devised for patients with Huntingdon’s disease.
Even a global pandemic couldn’t stop the 10th International Symposium on Neuroacanthocytosis Syndromes from happening! The format had to change to a virtual event but I think everyone will agree it was a resounding success.
Two speakers, Lori Quinn and Elina Tripoliti, shared their expertise in sessions for patients and caregivers. Their sessions were very well received and the scientists and researchers fed back how glad they were to have Lori and Elina speak, as they do not often get to hear, first-hand, such experiences.
Also discussed were the types and duration of exercise that could be taken to achieve therapeutic benefit. Lori mentioned that she was in the process of submitting an abstract to the Movement Disorder Society (MDS) Journal about the possible benefits of yoga.
Elina is a Clinical Specialist Speech and Language Therapist at National Hospital for Neurology and Neurosurgery UCL London and has been working with Alex Irvine for a number of years. Elina told everyone that unfortunately there is extremely little written material out there but that there is progress. The session covered issues around mouth guards which was extremely interesting and also covered Karaoke! Elina spoke about how singing can help patients as it activates both sides of the brain and Alex is testament to the enjoyment of karaoke.
If anyone would like to share their experience with regards to physiotherapy, speech and language therapy or in fact anything that they think might help others, please do let us know so we can share it in the next NANews. It could make the world of difference to someone and we can reactivate a “Tips” section.