Over 40 per cent of people living with MS report experiencing problems with speech. Melissa Loucas, a speech and language therapist based in Reading, explains what help is available.
Have you ever noticed changes in the way you are communicating which you think might be due to MS? You are not alone. Research has shown almost half (44 per cent) of people with MS report changes in how their speech or voice sounds to some degree (symptoms known as dysarthria and dysphonia). Sometimes language skills are affected, such as finding the right word or following a conversation.
Although changes in how your voice sounds can be an early symptom of MS, you are more likely to have significant difficulties with your speech if you have progressive rather than relapsing remitting MS and are experiencing other physical and cognitive changes. If this is the case, speech problems might not be your primary concern. In one large survey, only 9 per cent of people with MS reported significant speech difficulties and another study found speech had not really changed over nine years.
Referral to a speech and language therapist
You are most likely to see a speech and language therapist (SLT) for communication if you or those around you notice changes in how your speech sounds. The impact of any changes will be very inpidual but if you feel this is affecting how you join in conversations, socialise or perform at work, you can ask to see an SLT. Your medical team might also suggest an assessment. Usually your MS nurse, consultant or GP can refer you, but sometimes you can refer yourself. The way SLT services are provided varies across the country. Ideally the SLT will work within the MS team because the way you participate in communication can be affected by a complex range of factors, including fatigue, mobility, vision and bladder difficulties.
Understanding the problem
The SLT will usually assess your voice and speech by listening to you during conversation and in some assessment tasks. They will develop a profile of your speech system, relating to different patterns of muscle movement. A mixture of what is called ‘ataxic’ and ‘spastic’ speech is the most common pattern. You might recognise these terms from medical or physiotherapy assessments. Here they describe the movement of muscles involved in producing your speech. They can cause changes such as a weak voice which gets ‘tired’, a strained-tight or rough voice; slurred speech; disruption to the rhythm of your speech (perhaps robotic sounding and slow); and difficulties controlling the volume or intonation in your speech. The SLT might also assess your language – is there any difficulty finding words or following conversation?
As well as looking at the mechanics of your speech, the SLT will try to understand the impact of symptoms and your communication with friends and family and in the workplace. They often use questionnaires to help explore this.
How a therapist can help
The SLT will use both sets of information to find ways to help support you. Because of all the factors which can affect communicating, the SLT should work with other members of your health team – for instance an occupational therapist may be helping manage fatigue, or a neuro-psychologist may be helping support any changes in your mood or thinking skills.
Sometimes, direct work on the muscles involved with producing your speech will be appropriate. For example, this might improve the accuracy of your tongue and lip positions when speaking or improve the strength of your voice. I have had good results using this approach.
For example, after therapy, one man reported less frustration when speaking with his wife as he did not have to repeat himself so often. He also benefitted from another type of help which is often called ‘compensatory’. In his case, it was still difficult for his wife to hear him as she pushed his wheelchair along a busy pavement. So we worked on planning when to hold conversations and found a voice-amplifier which worked well for him in these situations.
Other types of compensatory approach might include:
• timing conversations with fatigue episodes
• reducing background noise
• being face to face with your conversation partner
• introducing a topic of conversation before giving lots of detail to help the person you are speaking to follow your conversation.
A compensatory approach can be appropriate for more cognitive or language-based difficulties with conversation when finding the right words or following a line of thought is more of an issue. Your SLT can help you identify things which make communication more difficult and offer things to help you.
As well as amplifiers, there is a lot of other technology available to help with communication which your SLT can help you explore. This can range from text-to-speech apps to more simple communication boards, which have pictures of common words and phrases. These can be helpful in more routine situations, such as telling different carers how you like to be positioned.
How much contact you have with an SLT will depend on the nature of your symptoms. It might be brief, perhaps an assessment as part of your initial MS investigations or to help you understand subtle changes. It may be responsive as new problems occur – for example if particular difficulties arise communicating with new carers or if you have a specific speaking role at work with which you need help. Alternatively, you may need intensive therapy for specific areas of need or have a rapidly changing MS which needs regular SLT support.
"Starting a podcast in lockdown helped us take ownership of the situation"
23 Apr 2021 - 00:00
Comedian, Jeanette and Poet, Lytisha, talk about how creating their own podcast, about life with MS, led to lots of laughs, feelings of empowerment and a sense of community during lockdown.
Twelve year old Lacey hasn't been able to hug her dad for a year
23 Apr 2021 - 00:00
Before lockdown Lacey visited her dad every other weekend, but Covid restrictions have meant she’s not been able to visit her dad in his care home and give him a hug since March 2020.
'This is my normal now. I rather like it.' Living with PPMS in lockdown
23 Apr 2021 - 00:00
John Peters tells us how his working life changed during lockdown and how he’ll be quite happy not to go back to ‘normal’.