Mark Deere has SCA28 and his speech problems have resulted in him having to stop working. Here he tells us why speech therapy is so important for those living with ataxia.
In 1990 I left the UK to work in hotels, primarily in Dubai. In 2019 I was diagnosed with SCA28 and moved home to Wales. I’m now 56 years old, married and have two children of 18 and 21.
My diagnosis was a challenging process – there is little known about ataxia in the UK but even less in Dubai. I had to fly to Queen’s Square in London where Professor Bhatia recommended a genetic test. Blood was taken in Dubai, flown to Germany for analysis and the results were sent to me in Dubai. I then flew to London with the genetic test results for analysis and diagnosis.
I feel lucky that my other symptoms are mild, but a strained, strangulated voice meant that I had to give up work in Dubai. My voice made speaking in meetings, one-to-ones with colleagues, presentations and, of course, with hotel guests was challenging.
I don’t let a weak voice stop me from doing things now but using the telephone and being understood can at times be challenging – Zoom was a Godsend!
I was part of Professor Anja Lowit’s speech therapy pilot group; it was both useful and intense. It consisted of two weeks, one to one, with a speech therapist, twice a week – concentrating on saying “ah” clearly, loudly and for 20 seconds a time, and various often-used sentences. This was followed by four weeks in an unsupervised group situation, every day for one hour, doing pre-set exercises – all aimed around speaking loudly, slowly and clearly.
Afterwards there was a gap of six weeks (in which time we practised the exercises set) and we were all then examined individually by Anja (as we were at the start) to gage any changes/improvements.
The benefit of the sessions was two-fold:
- It taught techniques to improve communication – slowing down speech, taking decent breaths, emphasising words, speaking more loudly etc.
- It introduced a great group of like-minded people and we still meet via Zoom twice a week for one hour each time – to practice, chat and provide a medium for discussing situations and getting and giving advice.
There is currently no cure for majority of the ataxias, so speech therapy helps people with speech difficulties to learn techniques to be able to speak clearer and thus communicate better. The fact that our group has carried on with sessions means that we like each other and that has been a bonus from the sessions. It also ensures that I continue to practice techniques learned.