Michael Shepherd has been a volunteer for over 15 years, following his wife Shirley’s diagnosis of PSP.
Shirley died 11 years ago, but Michael remained determined to continue to support local families by coordinating a local group.
“My wife Shirley was a lovely lady, so kind and gentle. Sadly, PSP took away all that. Shirley had symptoms of PSP for around two years before it was diagnosed. Initially we had no idea what was wrong. Doctors and consultants didn’t either. Those two years were a struggle.
“Eventually Shirley was diagnosed. Armed with the knowledge Shirley had PSP, we organised a coffee morning at our church to raise money for PSPA.
“People came from all over, including Devon! That was how well Shirley was thought of. I remember that day well. We were selling cakes and cards. People would hand me over £20 and would refuse the change. We raised over £1,000. My volunteering for PSPA started at that event, and has continued ever since.
“We began to organise regular coffee mornings. Somehow, those coffee mornings turned into a PSPA Local Support Group. In the early days of Shirley’s illness, I had travelled 60 miles to a PSPA Local Support Group in Barnsley. I saw the value in the group, how it provided local people with support and information. Indeed, I learned so much about PSP from that one trip. Driving back home I was determined to help create a group that could provide the same level of help.
“I went into town to search for a venue to hold the meetings. The room I found 15 years ago is the same room we meet in now – the Pocklington Community Room. The people appeared from everywhere – all over the North East of England.
“Organising the local group isn’t arduous. People who attended the group soon became personal friends. Over the years people have come and gone, but the warm atmosphere has always stayed the same.
“When Shirley died, I couldn’t just walk away from PSPA. When you have seen a family member go through it, I think you need to do something to help. I don’t know when a cure for PSP will be found. What I do know is, if this horrible illness is going to be beaten, it will only be through people raising money and volunteering.”