26th January 2022
Write up by Hilary
We have a separate meeting for these types of HSP because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia. Most (but not all) of those affected being young adults dependent upon their parents.
These two types of complex Hereditary Spastic Paraplegia are particularly rare and the few affected families are scattered across the country so Zoom gatherings work very well for us.
Seven people, both affected young people and parents, were able to come along and others dropped by to say ‘Hello’, even though they had other commitments that evening. We met new people and caught up with old acquaintances, chatting for over two hours, getting to know each other better and sharing experiences.
We talked about symptoms such as pain and the different medications people have been offered, though a number of people didn’t experience pain along with the spasticity, which was good news. We discussed the various activities available and the limits imposed by fatigue. Some play wheelchair sports, even if they are not wheelchair users, while others feel sport isn’t for them. We covered the impact covid has had on progression and mood. We talked about the variable provision of physiotherapy and also about the problems arising from continence issues. One family had found the Just Can’t Wait Card to be helpful and many found carrying a radar key to be very useful. Some people have moved house and others have adapted their homes to ensure the accommodation, including the bathroom, is accessible.
We discussed the need to plan in great detail when travelling, whether in this country or abroad, and the frustrations that can arise, even with the best of planning! Some had managed to fly, while others had restricted themselves to holidays in the UK because of the complexities of international travel. Even in this country people had found it difficult to locate accessible accommodation. The general sense was that everyone could do with a proper holiday!
Inevitably, we talked about PIP but it did seem as though most people were getting the right decision in the end. We also discussed research and selective dorsal rhizotomy, a surgical procedure to release spasticity, which we believe is not yet available in the UK for HSP.
Finally, the young people, themselves, are arranging to meet up through Facebook.
We plan to meet again on Zoom, so if you have SPG 11 or SPG 15 in your life, and would like to join us, please get in touch with me by email so that I can send you the joining details, when we have a date. I’d love to hear from you.