Di’s husband David was diagnosed with PSP in 1998 and died in 2003, just four and a half years later. Since then Di has volunteered for PSPA.
Having served for over 21 years, Di is one of our longest serving volunteers and is determined to continue, for as long as she is able to help others affected.
“David was a farmer. A big strong man, I gradually noticed he was getting very unsteady, with the occasional fall thrown in. David had never been to the GP in his life, the doctor couldn’t even find his notes.
“When we saw the neurologist, he took one look at David and told him he had PSP. He gave us a leaflet with a contact number for Michael Koe, who, at the time was running PSPA from his home.
“Two days later Michael called. He was amazing and I shall always be grateful for that call. I had no idea what we were up against, so speaking to someone who knew about the condition, and had personal experience in caring for their loved one, made such a difference. Michael shared how he had cared for his wife Susan and told me to call anytime. That call set me on a path to help people also faced with PSP. I saw the difference talking to someone who had been there meant to me, so I wanted to do that for others.
“With David, things got worse very quickly. Soon it became obvious he could no longer farm. He had to get rid of his beloved cows. It was a horrendous time. We auctioned off the cows first, followed by machinery.
“Watching his old life being dismantled like this must have been unbearingly hard for David. Not that he ever complained or asked ‘why me’? He was the easiest person in the world to take care of. I nursed David for four and a half years. He had a PEG fitted, was on a ventilator, could no longer see or speak. In the end, he was bedridden.
“Maggie Rose, one of the first employees at PSPA, got in touch. I attended the very first meeting and helped make teas and coffees. When I was asked to help coordinate the meetings I didn’t hesitate. I’ve done it ever since. Remembering the impact of Michael Koe’s call, I wanted to try and have that impact on other families.
“I can’t believe I have been involved with PSPA for 21 years. I love it and it means so much to me because it has played such a huge part of my life. I am doing this for David. He was such an incredible man. Very quiet, but also very brave and stoic.
“I don’t know how much longer I can continue to volunteer, but I am determined to keep going for as long as I am able. Those of us who have been there need to stick together.”