Hosna’s story: the FTD support group

The FTD support group has been my saviour. As soon as I got in touch with Jill, I spoke to one of the members that you can call whenever you need to. And she has been absolutely wonderful, a lady named Carol. And I remember the first time I called. I just broke down. I was on the phone for, like, maybe an hour or two just talking about all the stuff going on. And then she told me her story and some other stories. And then once you realise you’re not alone, and that you’re not going mad, it just, at least temporarily, makes you feel so much better. And whenever I have a problem, I can pick up the phone and call.

Whenever there’s a situation going on, even my mum going to a nursing home, I’ve got people who have been through this experience to turn to, to give me their perspective, so I can go away and think about it and make an educated choice as to what I should do next. I started seeing Susie Henley, who is the clinical psychologist here at the National Hospital of Neurology, and my sessions with her have been invaluable in helping to cope with my mum’s disease and develop strategies to distract my mum when she’s being particularly difficult. So for example, when we stopped my mum going to the office literally at the front door, she would try and leave.

And I would have to stop her. And my mum would literally beat me up at the front door. She would just stand there physically punching me on the back. So Susie taught me a strategy of perhaps trying to use a distraction technique, something that my mum, likes like cake. So she said, you know, have the piece of cake ready so that when this starts, you can just distract her and take her away from that situation. And I developed so many amazing coping strategies that helped me to not have a nervous breakdown literally every single day that this was going on. And these sessions have been invaluable because the person knows about FTD. They understand the disease better than you.

And they can put into perspective what is going on with that person and help you to cope with these changes in behaviour. So I’m really thankful for the FTD support group and my sessions here at the hospital.