Hosna’s story: diagnosis

I had been to the GP, I think maybe six to eight months earlier. Because I thought something wasn’t right, in the sense that family friends were saying, she doesn’t remember people. She’s not recognising their faces. So when I went along to the GP, they did the memory test, which doesn’t really pick up what my mum has. But he didn’t take me seriously. And he just said, oh, well, it’s too early to put a label on your mum. So let’s see how she goes in six months time. And then, this incident at the dentist happened. So the dentist said, I’m going to ring your GP, and explain exactly what’s happened. And then, I contacted the GP.

And all the GP said was, yes, I’m happy to refer you. And that was it. We didn’t go in and visit him. He just referred her to the local mental health services team. In November 2011, we went to see the local consultant. And I explained various things about my mum’s behaviour. I don’t recall getting any confirmed diagnosis, i.e. this is Alzheimer’s or this is dementia. I think an umbrella term of dementia was used. And we just had a chat. My mum was started on a drug called Aricept. And then, we left. And then, we had a follow up appointment. We’d have another chat again, about things that were going on. But that’s all that happened.

And then, I start to do my own research. And somehow, I came across the FTD support group online, which is the frontotemporal dementia support group. And I got in contact with Jill Walton. And we had a really good chat. And Jill said to me, has your mother had a referral to the National Hospital of Neurology? And I was like, no, what is that? What should I do? So Jill was very kind and helped me to construct a letter to just take to the GP, to just say I want this referral. We saw Professor Nick Fox. And I had a description of all of the strange behaviours that had been going on. Say hello.

[Hosna speaking] No, So the language skills are the first to go, and you revert back to your mother tongue. So this is sometimes an issue in hospitals. They think that my mom can’t speak English. [Hosna speaking] Daddy’s at home, Mom. [Hosna speaking] your husband’s at home. I think he could tell even before having a scan and some of the tests that they perform, that this was looking like frontotemporal dementia. And from the scan, they can clearly see that the front part of her brain had signs of shrinkage, which indicated FTD. And from that moment on, I just started to educate myself on what behavioural variant FTD was, and what to expect.

And every time I read the background, every single symptom was something my mum had displayed. So you just knew that this is what it was, rather than something else. For me, it was like a eureka moment. It was– I felt relieved. And I thought, ah ha. Now, I can go and tell the family, like, what is wrong with my mum.