Heather Deville has Friedreich’s ataxia (FA) and talks about how speech therapy has given her the confidence to speak in company.
I was diagnosed with FA at 49 years old and am now 57. Prior to my FA diagnosis I had had testing for other types of ataxia and was given a vague diagnosis of cerebellar ataxia. The diagnosis process was not great because I didn’t show any symptoms of ataxia until I was in my 40’s. The neurologist I was seeing at the time didn’t even think to test for FA because of my age. It was very much an afterthought on his part – I had never heard of it so would not have been able to ask. There are no other members of my family with it.
As time has gone on, I have found my speech has become slower. It also becomes slurred if I try to rush. I have to think about what words I am going to say to ensure I can say them clearly enough to be understood. It has made me avoid speaking too much as I also get tired quickly and my speech becomes more slurred.
Prior to Prof Anja Lowit’s speech therapy pilot group I had a couple of appointments with a speech therapist, but for problems with eating and choking on food rather than speaking.
Anja’s group was good. It made me ‘do’ something about my speech. Having the sessions online with a speech therapist and then the peer group was a way to make me practice making my voice stronger. It has had a positive impact. It has given me more confidence to speak when in company rather than just allow the conversation to go on around me. The peer group I was with still meet online a couple of times a week too.
If there are any further courses being run, get involved. It gave me the chance to speak with others who have ataxia, so understand the problems you encounter. By this being done via Zoom means you do it from home.
Speech therapy is important to people with ataxia as being able to communicate with other people is vital. One of my peer group said they get treated as if they are stupid because their speech isn’t great – our brains still work even if we aren’t able to put it into words easily! I find as my FA progresses and my mobility reduces, I have got to try and keep being able to speak.