When Val read about a volunteer setting up a Local Group.
Val decided to set up her own rather than travelling over an hour to her nearest one. She has been running the group ever since.
Val said:
“As I was flipping through the pages of PSP Matters, I read the article about Betty Peers who set up her own Local Group after realizing she would have to travel over an hour to her nearest one.
“It really resonated with me and I thought if she could do that I’m sure I could too. My husband Neil, was diagnosed with PSP over two and a half years ago. At the time I felt like we had no local support or connections and everything felt like a constant battle.
She said:
“We live in Stockport and had initially travelled across Manchester to our nearest Local Group. Dealing with the M60 took so long we knew attending wouldn’t be a realistic option for us.
“Neil’s physiotherapist from the nursing home told me about a group of people with PSP who were meeting up at a local hospice. I got in touch with the hospice and asked if they could pass on my details to the people meeting, so I could make contact. I told them about my desire to set up a Local Group and the hospice offered to provide space to hold regular meetings.
“I contacted PSPA and told them I had been offered a venue and that is when it all kicked off. They emailed everyone they knew who was living within a 15 miles radius and asked if they would be willing to attend. The replies were so enthusiastic and encouraging that I knew this group was much wanted. I printed flyers and handed them to the hospice to give out.
“Alison Knight picked up my flyer and got in touch. Alison’s mum was one of the group members who met at the hospice. Alison and I met up a number of times to formulate plans and make sure the new group was well advertised.
She said:
“On 11 April we held our first meeting, with 18 people. Everyone shared their situation and outlined any problems they were having. Everyone was so willing to talk and we all shared our collective frustrations at so many professionals not understanding what we were going through.
“I was thrilled at how the meeting went. Now, I’m buzzing with ideas for the group.
“I called and emailed everyone who attended to say thank you for coming and I’ve booked the dates all the way up to Christmas.
“Being involved in the group has really provided me with something positive to focus on. I feel like I have some direction and I’m motivated to help others living in my area. I’m so glad I took the first step.”
