Memory walk: Joe’s story
Joe describes how he signed up to Ayrshire Memory Walk in honour of wife Susan who is living with a rare dementia
Joe’s story
My wife Susan is a very special lady. She’s smart, funny and one of the most caring people you could meet.
It took about five years of tests, but in 2020 she was diagnosed with primary progressive aphasia, which is a type of frontotemporal dementia that affects a person’s ability to communicate. When it was confirmed, it came as a huge blow to the whole family.
When you first find out, you have a million questions and it can be overwhelming.
We were lucky to find out about Alzheimer Scotland’s dementia resource centre in Kilmarnock. The team there are fantastic and have given us so much information and support. I’m not sure we would’ve coped without it.
When I saw they were holding a Memory Walk in Ayrshire, I signed up straight away. I want to raise money to support Alzheimer Scotland and the vital work they do, and to raise awareness of dementia too. The more publicity we get, the better chance we have of getting funding to find better treatments, and maybe even a cure.
It’s been tough to see the changes in Susan as her dementia has progressed. She’s 66 now but worked for many years as director of services for an Ayrshire housing advocacy charity called CHAP. She used to speak in front of audiences of a couple of thousand people and host big parties, but now her communication is limited and she prefers the quiet of home.
With the help of our son Scott, I try to make sure Susan is as happy and well looked after as possible. I try to take some time for myself too and enjoy going to the Alzheimer Scotland centre every week. It helps so much being able to get a bit of time away to chat to the people there who understand what you’re going through.
I’m really looking forward to the Memory Walk. The day will be even more special because it’s taking place in Eglinton Park, Irvine, where Susan and I had our wedding photos taken back in 1998, and where we used to enjoy going for walks together.
Even though Susan can’t be with me at the Memory Walk, I’ll be walking for her and all the other families out there affected by dementia.
