Steady Advances in Diagnosis, Management & Treatment
Diagnosis
Gene testing as part of diagnosis of HSP is becoming more widely available around the world, covers more genes and mutations than previously, and is reducing in cost over time. This will help enormously with positive diagnosis, reduce mis-diagnosis of HSP, reduce the anxiety that goes with uncertainty, help with family planning and reduce the incidence of inter-generational transmission. Careful exclusion of alternate and co-existing disorders is an important element in HSP diagnosis. Gene testing is not something to be undertaken without a lot of thought however and with the information that a genetic counsellor can provide.
Management & Treatment
Treatment and Management are presently focused mainly on reducing and controlling the symptoms of HSP. A whole suite of disciplines – physiotherapists, podiatrists, orthotists, occupational therapists, exercise physiologists – as well as neurologists and family doctors are working on reducing muscle spasticity, treating urinary urgency, and maintaining or improving strength, flexibility and mobility of HSPers.
Fitness
While much is still unknown, the value and benefits of fitness – muscular strength, cardio-vascular fitness and flexibility are reported by many HSPers. Whether it is a workout at the gym, cycling, swimming or floor-based exercises – there is something of benefit that every HSPer can do. Aids such as ankle-foot orthotics, splints, canes, walkers or wheelchairs are a boon to many in maximising their mobility.
Surgery
Some HSPers have had surgery to relocate the tendons of the lower leg to facilitate walking. Good candidates for this surgery report significant gait improvements and there is evidence to suggest that foot deformity associated with HSP as it progresses is stalled, if not avoided.
Mental Health
The psychological aspects of living with a disability should not be ignored. Support from friends and loved ones is important to many HSPers in having a positive outlook on life, as is exercise and fitness. However it is not uncommon for HSPers to feel down, even depressed at times. Depression can and should be treated. Talk to your doctor or mental health professional. Here is a list of organisations who can help.
Helping Yourself
There is something positive that all HSPers can do for themselves every day. While there may not be a cure for HSP yet, there is much benefit to be gained from individuals investing in developing their own management and treatment programs, using a range of resources and the support of a wide range of professionals.
Go to the Australian Physiotherapy Association website to use the ‘Find a Physio’ tool. The search function allows you to sort by Location and Clinical Area – choose ‘Neurology’, as a physiotherapist with a neurology interest is likely to be a good resource in developing a program for an HSPer. You may need to search surrounding suburbs or larger centres to find a suitable physio.
Archive of Management & Treatment News
Each quarter’s pick of articles will be available in the Archive.
Check out Living with HSP – Management and Treatment News on the home page and the associated Archive for more information to help HSPers maximise their functionality and mobility in day-to-day living. Articles from each quarter’s Living with HSP – Management and Treatment News will be available in the Archive.
Some material in the archive has been sourced from the National Center for Biotechnology Information in the USA through PubMed – a service of the National Library of Medicine and the National Institutes of Health in the USA. We are most grateful for this excellent global resource and its value to HSPers everywhere.
These articles are for information and education purposes only. Medical matters should be discussed with your doctor and specialist and advice taken only from them.