The HSP Workshop was held this year at the University of South Australia on 6 November. 22 HSP community members attended, representing a high percentage of the whole HSP community in SA.
Four diverse sessions were presented:
Genes & Gene Testing – Dr Elizabeth Thompson, Clinical Geneticist, SA Clinical Genetics Service.
Achieving & Maintaining Good Mental Health – Cindy Eggington, BAppSc (Dis) (Hons); PhD Candidate, School of Disability Studies and Community Inclusion, Flinders University.
Managing & Maintaining Mobility – Tamina Levy, Principal Physiotherapist, Complex Neurology Clinic, Repatriation Hospital. Private Neurophysiotherapist.
Making Life Easier – Laura Oates, Occupational Therapist, Independent Living Centre, Disability Services, Community and Home Support SA.
Genes & Gene Testing
Dr Elizabeth Thompson, Clinical Geneticist, SA Clinical Genetics Service.
The session covered the genetic transmission and inheritance of HSP; gene testing and genetic counselling; and family planning/IVF followed by an engaging Q&A. Here is Liz’s PowerPoint presentation for download (2.4MB).
Achieving & Maintaining Good Mental Health
Cindy Eggington, BAppSc (Dis) (Hons); PhD Candidate, School of Disability Studies and Community Inclusion, Flinders University.
Cindy presented a framework for achieving and maintaining good mental health comprising Relationships, Interests, Lifestyle and Goals. In a highly interactive session, participants generated the following talking points:
- independence and caring issues
- encouraging, but not stifling
- cooperation and collaboration
- compatibility – sharing, sacrifice
- support in adversity
- trade-offs and alternatives
- understanding – knowledge, acceptance, being accommodating
- loyalty and support
- problem focused versus personal focused (adaptive coping)
- humour, spontaneity
- networking and the skills involved in that
- adapting to a changing environment (either activities or at home)
- security, love and acceptance
- interpersonal needs – handling tension in relationships
- physical needs
Cindy spoke about issues relating to identity, anxiety and tension – how the family sees the HSPer and relates to them. She also talked about post-traumatic growth and the value in finding opportunities in the situation.
It can pay to re-evaluate goals and interests based on what can be, the need to dream as well as plan and to maintain a positive outlook. Also discussed were the importance of friends, of pets and of regular opportunities to be outdoors and to experience natural environments.
As a parting thought, Cindy encouraged participants to not allow anxieties to develop and manifest. Don’t be slow to seek out others to talk to, as well as other ways to share and release anxieties.
Managing & Maintaining Mobility
Tamina Levy, Principal Physiotherapist, Complex Neurology Clinic, Repatriation Hospital. Private Neurophysiotherapist.
In a highly practical and hands-on session, Tam explained how
- with HSP, the core strategy is to strengthen weak muscles and stretch spastic ones.
- balance issues can be related to weakness e.g. in the tibialis anterior (shin muscle).
- aquatic exercise and hydrotherapy for both fitness and treatment are almost always helpful and safe for HSPers.
- deep massage before stretching can be beneficial.
- Botox injections to alleviate spasticity need to be followed with intensive therapy.
- dry needling into the motor point of tight muscles can help also.
Tam asked participants if any of them used electrical stimulation devices to help strengthen the shin muscle, which is responsible for lifting the toes when walking. The simplest of these devices costs about $300, right up to the NESS L300 Foot Drop System that costs $9,000 for each leg (see the article on Mobility Technology in this edition of the website http://www.hspersunite.org.au/mobility-technology/).
Tam offered an exercise handout drawn in part from this website http://www.physiotherapyexercises.com/ but made the point that HSPers need specific and specialised help with exercise and fitness programs to focus and maximise benefits in those areas most in need, while limiting potential risks and damage from exercises that are not suited.
Ed. Note: Consulting a neurophysiotherapist for assessment, exercise/fitness program development, monitoring and treatment is an excellent investment for HSPers.
Here is Tam’s PowerPoint presentation for download (1MB).
Making Life Easier
Laura Oates, Occupational Therapist, Independent Living Centre, Disability Services, Community and Home Support SA.
Laura presented a fast-paced session, looking at and discussing a vast range of assistive technologies and devices designed to make life easier for HSPers. Of particular interest were slippers with large Velcro closures over the top and around the back, making them a soft, custom fit for any foot. She talked about choosing and using devices to ensure people get the right one and that they can use safely.
Free consultations are available by appointment with the ILC. You will meet with an occupational therapist for a tailored consultation based on your needs, make recommendations and offer alternatives as appropriate. The ILC do not sell anything – they offer independent advice.
Independent Living Centres are located in every State. Find yours at http://www.ilcaustralia.org/home/default.asp. In South Australia, the Continence Association is incorporated within the ILC.
The sessions were followed by a social get-together over lunch. The lunch discussion was wide-ranging – one HSPer reported favourably on her experience taking Pramipexole (Mirapex, Mirapexin, Sifrol) for restless legs; the dearth of neurologists in South Australia with HSP experience was highlighted; and there was considerable energy and enthusiasm for forming a local social network for HSPers in South Australia.
The Foundation is very appreciative of the support given by Prof Susan Hillier who not only organised for university premises to be made available to us for the workshop, but kindly made tea and coffee, and kitchen facilities available to us as well. Heartfelt thanks to Susan and also to the presenters Elizabeth, Cindy, Tam and Laura for their efforts in preparation and presentation, and all for giving up their Sunday for us.