The distribution of members across areas is very varied. We have drawn up a map to show where our members are. Click here to see map
As a group we know there are normally research projects in progress into aspects of the condition. At present there is a mismatch between the funds we have available and the cost of such projects – we can't fund a whole project.
As committee we want to use our resources to help wherever we can. We believe it is appropriate to use our funds to support research projects, so we are prepared to use the funds to provide the “day-to-day” costs which often allow such projects to run more smoothly. Examples of such costs might be: resupply of laboratory reagents, extra laptop, other consumables.
We are keen to continue to support our members by providing grants to assist them in increasing their mobility by financing scooters or wheelchairs. Members who can’t get funding for the FES scheme should also contact us as we are keen to help with this. Grants of up to £750 per individual are available.
Application Forms are available here or from any committee member and completed forms should be sent to the Secretary, HSP Group, 18, Lodmoor Avenue, Weymouth DT3 5AF.
1. Physiotherapy / Exercise. Many people find a regular regime of exercises beneficial in keeping muscles stretched and thus reducing stiffness and pain. It is important to get help from neuro-physiotherapists to ensure the neurological aspects of the condition are considered in developing appropriate exercises.
2. Electrical Muscle Stimulation. Over recent years, a technology named Functional Electrical Stimulation has been used successfully by an increasing number of HSP patients. The device delivers electrical impulses directly to certain muscle groups, allowing patients to use muscles which had previously fallen out of use due to HSP. Perhaps the most common effect is to allow a trailing (dropped) foot to be actuated effectively during walking, thus improving gait and reducing fatigue.
3. Prescription medication. A range of drugs can be used to lessen the stiffness and/or reduce pain. Some medicines are also used to deliberately weaken opposing muscle groups and thus allow some degree of mobility to be recovered.
An illustrated guide shows how inheritance of genes is believed to work in HSP Click Here for details
HSP is arguably the more accurate of the two terms.