Peter Kahn has cerebellar ataxia and tells us how the speech therapy group with Anja Lowit has changed his life.
I was diagnosed with cerebellar ataxia around seven years ago and I’m 70 years old now. I am retired but used to work as a gardener.
My diagnosis was relatively easy and straightforward. I noticed that I had been falling over and my speech was slurring but at first, I thought it was my age. I spoke with my brother who has also has ataxia and he suggested I investigate. I referred myself to Queen’s Square in London and saw Prof Paola Giunti. After an MRI and blood tests, I found out I have idiopathic cerebellar ataxia as they do not know which gene causes my ataxia.
My speech impairment has been quite tough because I’m a very verbal person and my education taught me to express myself through words and talking is a huge part of life. Before diagnosis I didn’t understand what was happening with my speech and I lacked confidence.
Before taking part in Anja’s speech therapy pilot group I had been involved with speech therapy. However, it didn’t work well for me because it felt mechanical and it wasn’t engaging.
Being part of Anja’s speech therapy group has made a huge difference. I now have confidence with my speech. Anja has helped to make my speech intelligible by handing out advice and how to put this into practice. Our group still meet twice a week and together we practise the exercises. Since attending the group, people don’t ask “what” like they did before when I spoke, which means my speech is clearer. It has changed my life.
Speech therapy is crucial for those living with ataxia because ataxia impairs my speech. If I want to learn to cope with the impairment so I can communicate and engage with people like my wife, friends, family… then speech therapy is key. My ataxia gets worse all the time but through exercise groups, like speech therapy, I can try to improve my symptoms and build confidence to not be affected by ataxia. Anja’s speech therapy group has massively, positively impacted my life.