SPG 11 and SPG 15 Zoom Meeting Report

4 November 2021

Write up by Hilary

You may wonder why we would have a separate meeting for these two types of HSP.  It’s because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia. 

Although they share symptoms, such as mobility and bladder issues, with other types of HSP, they have some ‘add ons’ which make them rather different.  You might be interested to read a blog written by the father of an adult child who has SPG 11 here.

This was our first meeting for all those in the UK who have or who support someone who has SPG 11 or SPG 15.  These two types of complex Hereditary Spastic Paraplegia are particularly rare and we are all scattered across the country so meeting up in person isn’t a realistic option for us.  The HSP Support Group’s Zoom platform is the perfect solution. 

We chatted for a couple of hours, getting to know each other better and each of us sharing advice based on our own experiences.  We talked about: when symptoms first showed themselves; the difficulties and time it had taken to get a diagnosis; genetic testing of wider family members; and the fact that changes in NHS guidance in recent years have made testing more restricted.  We also covered symptoms, as well as medication and physiotherapy aimed at reducing their impact.  We discussed the equipment supplied by occupational therapists to make life easier and the different options for activities to make life more enjoyable.  We talked about the need for supported living placements for some, the difficulties in finding the placements and, yet, how successful these can be.  We touched on the stress and lack of sleep that tends to be associated with the conditions – for all concerned.  And, of course, we talked about PIP applications…  We also chatted about baking, football and motorbikes – it wasn’t all HSP!

We plan to meet again at 7 pm on Wednesday, 26 January and, 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 at tohiti@btinternet.com so that I can send you the joining details.  I’d love to hear from you.

Hilary

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