Everyone who gets this diagnosis comes to a point where there does not seem to be anything specific which can affect or reduce the effects that the condition has on their lives. While HSP can affect people differently, our members have many experiences in common. Through their feedback the following practical advice has been collated to provide ideas to try.
NHS/Local Authority services
Although there is no cure yet for the condition, many members find it beneficial to get a referral to a Neurologist who knows about the condition. This is because there are some ways of reducing the effects of some of the symptoms. There are also Physiotherapy exercises which can help in some situations. There are also electrical stimulation devices (FES) which can help some people to keep walking more effectively.
In terms of support there are various possibilities to be aware of:
Seeking clinical support from appropriate and knowledgeable consultants (because it is a rare condition, it helps most to speak with clinicians who have treated other HSP patients). You would need to get a referral from your GP.
Considering the use of types of aid in daily living (walking sticks or frames, orthotics to support “dropped foot”). Many of our members transition for one type to another during their life. An Occupational Therapist might help with some of these choices (again via your GP).
Seeking the help of a neuro-physiotherapist in developing a series of exercises which help to reduce the symptoms in your particular case (again via your GP).
Finding more local information
Some members have found local charities or business which provide some helpful services (e.g. a local charitable company providing therapy services).
Looking in your area for groups who might know “stuff” you as an individual might not know. A local group of MS Society members for instance might know a lot about wheelchair and mobility scooter business and services in your local area. A local rehabilitation exercise group might be another source of information.
Ideas you can try for yourself
Meeting others with the condition and learning from their experiences. In normal times we have meetings in various places across the country, but these usually involve some travelling because we only have about 300 members.
Our HSP group can provide grants to members to help with the cost of some devices and equipment. There is more information on our web page about this. Members qualify to apply for these after a year of membership.
Using the local information found in 2. above, you could try and see if you can join local groups such as MS Society, where people with similar symptoms might know more about local services and possibilities because of their greater numbers.
Consider buying devices (walking sticks, rollators, wheelchairs or other devices) which might help. Many of our members have tried this, sometimes if you are a “handy” sort of person a used device could suit you. Many are simple to maintain.