A support group for people living with two rare brain conditions is relaunching in Shropshire.
The Support Group will be held at the Severn Hospice in Shrewsbury and aims to support people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) and their families.
PSP & CBD are rare neurodegenerative conditions which over time, cause problems with balance, movement, vision, speech and swallowing. The two conditions affect approximately 10,000 people in the UK. Currently there are no treatments, and no cure.
Peter Grindley is the volunteer Support Group Coordinator who is helping UK charity PSPA to relaunch the group meetings, which will take place every other month, beginning on 31 July 2024.
Peter has experience of the rare conditions after his wife, Janet, died of PSP in 2021, and together they attended Support Group meetings in the area in 2018 and 2019. Peter now wants to use his experience to help support people in his area and relaunch the group.
Peter said: “The PSPA Shropshire Support Group was run very successfully by Dianne Davies until Covid intervened. Sadly. The group never got going again.
“The meetings were well attended and, I felt, extremely beneficial with a great deal of useful information being exchanged between families. Importantly people made new friends facing similar difficulties and learnt how to overcome challenges and what local services were available.
“Earlier this year, I contacted PSPA to establish if there was interest in restarting the Shropshire Group and, if so, I would be happy to coordinate. That agreed, I contacted the Severn Hospice about availability of a suitable room.
“Currently, with PSPA’s help, I am promoting the relaunch of the group to people living with PSP & CBD within a 40 miles radius of Shrewsbury. The first meeting of the relaunched group is Wednesday 31st July, 11am to 1pm.
“Initially, I will focus group meetings as being a place to meet others facing similar challenges, an opportunity to make new friends and have a good chat over a hot drink and a piece of cake. As meetings progress, I will look to invite guest speakers and establish discussion topics.”
Anyone who would like to join Peter at the PSPA Shropshire Support Group Meetings, can email volunteering@pspassociation.org.uk for more information.
For venue details and meeting dates, please visit pspassociation.org.uk.
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