14 June 2018
Motor neurone disease (MND), has a variety of symptoms – including loss of speech. Here, we explore why this happens, how people cope with this symptom, and look at how advances in technology are helping people with MND to find their voice.
Motor neurone disease, known as amyotrophic lateral sclerosis (ALS) in the US, is a group of diseases caused by damage to the motor neurones – these are brain cells that control our motor skills. Motor neurones are responsible for sending electrical impulses to and from the central nervous system, enabling our muscles to work. They control many basic, taken-for-granted functions such as breathing, walking, running or picking things up.
Damage to the motor neurones leads to muscles not working properly, and gradually wasting away. Symptoms of motor neurone disease may begin with a weak grip, muscle weakness or cramps, tripping over, slurred speech or fatigue, and often these gradually develop into a partial or complete loss of mobility and possibly an inability to speak. Speaking involved a complex coordination of muscles involving the stomach muscles, lungs, voice box, tongue, face and teeth… with the brain managing it all. If any of these muscles are affected by motor neurone disease, speaking may become difficult or even completely lost.
Not everyone with motor neurone disease will lose their speech – a person’s symptoms will depend on which of their muscles are affected, and each person with MND experiences it differently. Some people may find the sound of their speech alters, becoming more nasal, slower or slurred for example. Speech loss rarely occurs suddenly. But for those who do experience speech and language problems, there are ways a person can continue to communicate. Many people will have seen and heard Professor Stephen Hawking talking with a computerised voice, but how accurately does his case represent the experiences of other people with the disease?
Prof. Stephen Hawking sadly passed away in 2018, after living with motor neurone disease for 55 years of his life and achieving incredible feats. He was diagnosed with MND in 1963 whilst researching the science behind the origins of the universe at Cambridge university. Professor Hawking lost his ability to speak in 1985 after a serious infection led to an operation on his windpipe. His initial solution for communicating used an alphabet card, to which he raised his eyebrows to spell out words. Soon, he was provided a computer program to use, specially adapted for his use.
Over the years, and as his symptoms worsened, his communication device had to change, and with increasingly improved technologies, he was able to use state of the art computing systems. Before his death, he used a tablet computer mounted onto his wheelchair, with a software keyboard on a screen. With an automatic cursor scrolling across the letters, Prof. Hawking would select letters, amazingly, using the movement of his cheek. He became attached to his computerised voice, which had remained the same through all the different technologies he had used over the years.
Hawking is a very unique case, both in the slow progression of his condition, and the technological experts he was able to work with to create a bespoke communication device. So, what can ‘ordinary’ people with motor neurone disease do, if they are concerned about losing their ability to speak?
There are numerous low and high-tech options for people who are physically able and willing to use them. Augmentative and alternative communication (AAC) is a term used to describe a range of methods used by people with a variety of health conditions, which may cause them to have little or no clear speech or writing ability. AAC is used by people with autism, cerebral palsy, stroke, learning disability, hearing loss and so on.
AAC includes both high tech, computer based devices as well as simpler, back-to-basics approaches such as picture boards and hand signals.
If you have motor neurone disease (or are caring for someone who has) and are concerned about your speech now or that your speech may decline in the future, it is worth understanding the options that may be available to help. The type of equipment many of us use daily now has excellent capability for communication, even if a person cannot speak; mobile phones or tablets are a form of AAC, and many people who are unable to express themselves verbally are able to send text messages.
A speech and language therapist is the best point of contact, accessible via referral from your GP or MND specialist. They may be able to investigate the problems you are having and assess you for suitable AAC solutions, if they feel these would help you at the current time. Some people choose to use ‘voice banking’ – a method of recording words and phrases whilst their language ability is still intact, so that this can then be used within a recording device at a later stage of their condition if required.
There are lots of ways to use a computer, laptop or tablet with specialist software such as Grid 3 or Communicator 5, that will provide speech output. The user can type what they wish to ‘say’ and the software is able to translate this into spoken word or written message. For a person who is unable to use their hands to operate a keyboard, there are hands-free mouse alternatives. Eye gaze trackers allow a person to look at an on-screen keyboard or blink at an appropriate letter/word. Similarly, other movement-based mouse emulators enable a person to use their head to control a computerised speaking device, which works via infra-red.
Not everybody will be able to use AAC as described above. Many people find that basic, non-technological ways are still the best solution for them. This may include:
Many people find AAC helpful and are able to use alternative communication methods that still enable them to convey their needs or express themselves. People with motor neurone disease may well find communicating tiring, and experience fatigue from the concentration and movements involved. Additionally, a person’s needs may change as their disease progresses, so even if some communication methods work at one stage, the person may need regular assessments as their symptoms and abilities change.
The ability for someone with MND to communicate may also depend upon how the other people involved in the communication behave and respond. Some people are amazed by the technology and distracted by this. Some people find it embarrassing that they do not understand the person, and this may make them shy away from communicating, give up trying to understand, or feel and act frustrated. The focus should always be on the person with motor neurone disease – help them in any way possible to express themselves, and be patient.
The technology used by Professor Stephen Hawking enabled him to articulate his extraordinary ideas at conferences, teach in lectures and participate in intellectual debates. There are many technological ways for people with motor neurone disease to do this, but others may still find Hawking’s original ‘alphabet card’, used decades ago, to be the right solution for them.
If you, or someone you know, have motor neurone disease and would like more information about the range of augmentative and alternative communication options that may be available, visit the MND Association website.
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