Our Friend Ester generously spent some time sharing her experiences of ups and downs with speech therapy, and how she finally managed to receive the support she needed and deserved.
“Speech therapy forces you to remember to pace yourself – not just with speech but with the ataxia in general.”
– Ester, with CA
Did you know it takes about 100 muscles to speak? Muscles that have to work in close collaboration and with precision. Ataxia affects the body’s ability to coordinate its muscles, including those used to speak and communicate. And so it should come as no surprise that people with progressive ataxias often rank speech and communication difficulties as one of the top three symptoms of their condition.
Ester had isolated and vague symptoms in her 30’s that were always attributed to other things, leading to misdiagnosis that resulted in her being treated for conditions she did not have – leaving her very ill. In 2019, Ester knew something was wrong. Luckily, when she asked for a referral ‘everything sort of just fell into place from there’, with a visit to Professor Giunti at the London Ataxia Centre. “My GP didn’t know what ataxia was and so without the Ataxia Centre and Ataxia UK I don’t know where I would be right now as the symptoms have gotten worse.
The staff on the Ataxia UK Helpline were fantastic. They sent me all the information I needed, and more. In the beginning it was a relief to finally know what happened but then you go through this period realising that you can only do your best.”
When Ester received her diagnosis in early 2020, Prof. Giunti referred her to a Speech & Language Therapist but at this point she could still hum, sing, and hold her breath and so they focused on her difficulties with swallowing, which helped at the time. But as Ester’s speech skills worsened, she got in touch with a second speech therapist, external to the Ataxia Centres, who sadly was not specifically trained to support those affected by ataxia & so Ester discharged herself.
We know what a big difference having a speech therapist who understands the symptoms of ataxia has on the success of therapy
Intent on changing this, Ester joined the waitlist for the Ataxia UK Speech Therapy Course. Mandy led Ester’s course, and she could tell right away what sounds Ester was having difficulties with. Ester initially had a hard time with the speech therapy due to her vision loss and sight difficulties, but she was adamant to persevere and work to combat the symptoms of her ataxia. “In group sessions my therapist, Mandy, gave us exercises to do, which were simple to start with and then were intended to challenge us. These were tailored to people at the same level as each other, which helped boost confidence. We were all given a phrase that we had to repeat every session, and what I didn’t know was that she was recording them and at the end of the course she played them back to us and you could see the improvement in every participant’s speech! Mandy also incorporated postural tips and exercises to improve this in addition to throat/swallow relaxation exercises that I believe were vital for everyone as part of the therapy.”
“It’s an amazing and really very encouraging course. It gave me my voice back It’s almost like the speech therapy forced you to remember to pace yourself – not just with the speech but also with the ataxia in general. Mandy was really reassuring & didn’t make anyone feel like they
couldn’t complete the course. It was very inclusive and even those with the worst speech weren’t discouraged!
Not only can speech therapy courses help users reclaim ownership of their voice, but they often act as a support group for those isolated by their ataxia. One individual in Ester’s speech group still hadn’t seen a neurologist and the group were able to provide some feedback and information to help with this.
Ester is part of a collective reading group where members read parts of a book out loud – an activity she enjoyed doing but became more difficult when her symptoms worsened. She used to speak loudly, lacked expression and breathed too quickly. Since taking part in speech therapy, people around her have noticed improvement and she now has the tools which have reinforced the best places in sentences to take a break and where to emphasise words.
“For people who don’t have someone in their life to help them, there are so many services that Ataxia UK help with. I can’t emphasise how much Ataxia UK and the correct medical people have helped me. I could not make myself understood before, but now… Sadly though, there’s no quick fix and you have to help yourself too – even when life gets busy you have to invest your time in supporting yourself.”
The Gift of Speech is one of our most sought-after support services. We urgently need additional support for the Gift of Speech to help more people move off the waiting list and access essential speech therapy courses.
It’s fantastic to hear the impact attending one of Ataxia UK’s specialised speech therapy programmes has had on Ester’s speech and mindset.
The Ataxia UK speech therapy course has helped 78 people so far, but sadly the wait list for this essential service grows. Currently demand far exceeds capacity and without support these services may not continue.
A gift of £25 can help give the Gift of Speech, helping reduce the feelings of negativity and isolation within the ataxia community. You can donate here to support the Ataxia UK Speech Therapy Project.
