Margaret's story

I’d always had a really good memory before my diagnosis. I was good at multitasking and was involved in lots of things, from amateur dramatics to hillwalking and singing.

For many years I worked in busy full time jobs as an administrator until I started noticing my memory wasn’t quite right. My sister encouraged me to see my GP about it and he referred me to neuropsychology right away. I had lots of scans but it was a lumbar puncture that confirmed I had frontotemporal dementia. 

I was only 51 and it came as a real shock. Up until that point in my life, if something was broken I would get it fixed and move on. But this was a totally different situation.
 

What shocked me more was what happened with my work. When I began showing symptoms they quite quickly told me that I should go home and that I wouldn’t be able to work anymore. They paid me for about six months until I got my formal diagnosis, but it was a really difficult time.

I remember thinking: 'if I can’t work, what am I going to do?'. Added to that was the fact I had to deal with the DWP to arrange my pension, which was a whole other minefield. I was lucky to get a great consultant who helped me find out about frontotemporal dementias. I wanted to know more about my condition so I could deal with it. The kind I have doesn’t have its own name – it’s caused by a mutation of a gene that’s also linked to motor neurone disease. It took me a few months to come to terms with it all but I eventually gave myself a talking to, took myself into Glasgow for some retail therapy and felt a lot better. My family have been a great support for me throughout.

It was thanks to my consultant that I heard about Alzheimer Scotland’s Centre at Bridgeton. I’m so grateful for being able to go to there, and I was given a Post Diagnostic Support Link Worker who’s been really helpful. I love going to the Alzheimer Scotland café and was so pleasantly surprised at the supportive environment. No one is sitting around talking about the type of dementia they have – they were just enjoying being together.
 

I got involved with the charity’s Scottish Dementia Working Group which has been phenomenal. Initially I was probably a bit quieter because I wasn’t sure what to expect and the public perception of dementia is that you’re finished and you can’t do anything. But I soon found my voice.

It’s been busy at times, but it’s been really empowering and I can be as involved as I want to be. I like that you’re learning as well as contributing and it’s great seeing the improvements we’ve made. Just recently a few of us went to Glasgow City College to speak to students who are working in dementia care and the lecturer told us that she would be incorporating what we said into her teaching. It was really nice to hear that.

It’s important to me to stay active and so I go to an exercise class every Friday at the Alzheimer Scotland Centre in Oxford Street, Glasgow. I go for walks, either alone or with family or friends, and it really makes me feel better.