Motor neurone disease (MND) typically progresses in three stages: an initial stage, advanced MND, and end-stage disease.
One of the initial-stage symptoms is slurred or lost speech, an upper motor neurone change that can be extremely challenging – both to the person living with MND and his/her caregiver(s).
Not every MND sufferer will develop speech problems (an estimated two out of every ten patients are affected). Those who are affected are sometimes mistaken for being inebriated. This is because the muscles in the mouth, throat and chest are affected.
A person with MND may experience:
– Weakness in the soft palate, which can result in nasal-sounding speech (hypernasality)
– Difficulty in pronouncing certain sounds, especially consonants (linguals)
– Weakened tongue and lip muscles, which may make it harder to speak clearly
– Fatigued vocal chords that create a hoarse, low-pitched, monotonous, “harsh” voice
Unfortunately medical science and rehabilitation methods haven’t progressed to such an extent that these speech changes can be prevented or cured.
However, in recent years, technological advances have paved the way towards better communication methods for people living with MND. A few simple examples include texting, messaging, emailing, using internet forums and/or social-media platforms to talk to friends and relatives, and employing voice-recognition software.
But due to the restrictive, advanced stage of the condition (when muscles in the limbs are also affected) and the relatively high cost of state-of-the-art technologies and software (an example is Dragon Speech Recognition Software that can be purchased via www.nuance.com), these tools aren’t accessible to all.
For these patients, “no-tech” solutions such as alphabet boards may prove useful. An alphabet board is merely a paper that displays the alphabet, letter by letter, along with numerals, a “spacebar”, and a “yes” and “no” option.
A note to caregivers: it’s important not to attempt to repair speech, as this may cause unnecessary fatigue and frustration.
Tips for people living with MND
In extending your ability to speak unaided, you may find it useful to:
– Avoid background noise
– Speak slowly
– Save your energy by using short sentences
– Pause, breathe and clear your mouth of saliva
– Use hand gestures to replace parts of speech
– Ensure your listener is attentive and looks for non-verbal clues
– Over-emphasise words and break them down into syllables
Tips for family and caregivers
Clear communication is one of the cornerstones of any relationship, but it’s especially important when you have a loved one with a speech impairment.
Create a useful dialogue with these few steps:
– Identify the person’s communication challenges
– Always choose quiet settings in which to communicate
– Face the affected person when you’re speaking to them
– Don’t feel you have to simplify your own sentences
– Try to use questions that only require a “yes” or “no” answer
– Be patient when the person speaks slowly
– Encourage your loved one to pause, speak slowly, breathe and clear their mouth of saliva
– Encourage them to use hand and eye gestures, and possibly an alphabet board, when they’re tired
Contact the following organisations for more information on communication aids: