Motor Neurone Disease: A Family Affair (Overcoming Common Problems)
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Motor Neurone Disease: A Family Affair (Overcoming Common Problems)
Volume 2. Each form is named according to the pattern of symptoms it presents. A fourth form of the disease, primary lateral sclerosis PLS , is rare and often only provisionally diagnosed. Most cases of motor neurone disease occur randomly, with no known cause. Usually the onset is gradual but younger patients may show a more rapid progression. The average life expectancy is two to four years from diagnosis but some people succumb within a matter of months, while others live up to 20 years.
Motor neurone disease (MND) - Better Health Channel
Motor neurone disease can affect the upper motor neurons in the brain causing generalised muscle spasms and exaggerated reflexes , or the lower motor neurons in the brain stem and spinal cord causing a progressive wasting and weakness of muscles responsible for speech, chewing and swallowing. Because motor neurone disease is a progressive disease, both the upper and lower motor neurons are eventually affected.
Poor swallowing makes it more likely that food or saliva will be inhaled into the lungs. This increases the likelihood of infection in the lungs, which is often the cause of death for people with motor neurone disease. Musculoskeletal pain, pressure associated with immobility and muscle cramps are the most common causes of pain. Motor neurone disease does not affect touch, sight, smell, hearing, or intellect. Additionally, the muscles that move the eyes are usually not affected.
There is no specific test for motor neurone disease and it may be difficult to diagnose in the early stages. Diagnosis relies on a complete medical history and physical examination, as well diagnostic tests. If motor neurone disease is suspected, a referral to a neurologist a doctor who specialises in the treatment of diseases of the nervous system will be recommended. Medications may be prescribed to control involuntary muscle twitching, muscle cramps and excess saliva.
However, treatment essentially focuses on retaining function and quality of life, and providing comfort. A wide variety of equipment to help overcome practical difficulties and communication problems are available. The progressive nature of the condition means that most people will eventually require full time nursing care. When breathing becomes too difficult, a mechanical ventilator may be required to maintain breathing. Health professionals need skills and knowledge about the application of technology to be able to work with people with MND to select the best communication technology options as early as possible after diagnosis.
If people with MND are willing to trial telehealth technology, there is potential for tele-consultations via Skype or its equivalent, with health professionals. People with MND can benefit from health professional involvement to match technology to their functional limitations and personal preferences. However, health professionals need a comprehensive understanding of the application of available technology to achieve this. The loss of the ability to communicate by speech, facial expression or hand gestures is one of the most devastating aspects of motor neuron disease MND [ 1 ].
Communication difficulties affect the majority of people with MND at some stage of the disease, and as such, assistive technology is essential for enabling them to continue with their everyday activities [ 2 ]. Likewise, telehealth and online communications are often important lifelines when leaving home or travel becomes too risky or difficult.
This article reports on an exploratory survey of people with MND about their use of communication technology, including generic and assistive technology. Assistive technology is defined broadly as any piece of equipment that is used to increase, maintain or improve function for people with disabilities [ 3 ], and will include communications technology. In the context of rapidly changing technology, public debate about telehealth, and projects such as the rollout of the National Broadband Network NBN in Australia, this project aimed to identify the current use of technology by people with MND, their attitudes towards technology use and how technology supports their communication needs.
Motor neuron diseases MNDs are a group of progressive neurological disorders that destroy motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing, and swallowing. Generally, intellect, memory, sight, hearing, touch and taste remain intact, unless an individual is affected by fronto-temporal dementia.
ALS affects adults and usually more men than women with an average age of onset of 58 years, usually when people are at highly active stages of their lives. Life expectancy is typically short around months after diagnosis, combined with rapid loss of function, making the implementation of technology solutions very urgent [ 4 , 5 ]. Being able to create an optimal match of the needs of a person with a disability with technology solutions as early as possible, and involvement of the consumer in decision-making about the selection of the assistive technology solution are both essential for a successful outcome [ 6 ].
Such processes may help prevent the high levels of dissatisfaction with and non-use of technology solutions by people with disabilities [ 7 ]. This can be a very complex process, as the availability and development of potential technological solutions are constantly expanding, and reactions to physical and sensory changes associated with a disability have to be accommodated.
Individual personalities, attitudes, past experiences, cultural values, environments, perceived capabilities and functional levels all have to be considered [ 8 ].
This is particularly true for technology to assist with communication, but people with MND are also likely to be faced with technology use in other areas of their lives, such as mobility, daily living tasks and home modifications. Therefore, the early use of technology has to be balanced by adjustments of people with a disability, as well as issues of grief, loss and identity.
Due to the inconsistency of symptoms and the speed of deterioration in function, many people with MND are unprepared for the disabling loss of communication and the need to use assistive technology for communication [ 9 ]. The individual level of functional disability affecting communication and individual capabilities to use technology solutions are both likely to change throughout the progression of MND. This complicates potential intervention decisions and increases the learning demands for people with MND [ 10 ]. Augmentative and alternative communication AAC is defined as any mode of communication other than speech and includes low-tech as well as electronic communication devices [ 9 ].
Research on the attitudes and acceptance of the use of AAC and other technology in a range of communication settings is limited. However it is not uncommon for users to utilize more than one access strategy [ 11 ]. Literature indicating preferred communication hardware for people with MND is limited. Online forums for people with MND indicate a preference for lightweight, portable options, particularly the iPad or tablet computer. The most common difficulty of these devices is their inability to support adaptive equipment, so their useful life spans are short [ 12 ].
Current communication technology options include speech synthesis software for desktop, laptop and tablet computers, portable amplifiers, digital recorders, email and message boards [ 13 ].
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Although there are several high-tech adaptive devices to use with computers such as SmartNav, eyegaze technology and the brain-computer interface [ 14 ], they all require extensive user training. The challenges with eye gaze interfaces are shared with other interfaces. For instance, the eye gaze technique is reported to be inaccurate in the selection of small objects, effortful and difficult to master, as well as being difficult to calibrate and expensive [ 15 ].
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People with MND have reported that communication technology is essential to develop and maintain social closeness, and this is more important to them than the transfer of information to express needs and wants [ 11 , 16 , 17 ]. As a result, low-tech solutions may be adopted over high-tech equipment in many instances. One common platform that can be used for social contact or to access health interventions is Skype a voice over Internet protocol, or VoIP platform, with video capability. However, a review of research concluded there was no firm evidence in support of or against the use of Skype for telehealth [ 18 ].
Regardless of the platform chosen, the use of telehealth is expected to double in the next decade [ 19 ]. The disadvantages include privacy, security and confidentiality risks [ 20 , 21 ], technological challenges and barriers to access such as cost, lack of access to Internet, low end-user technological literacy and confidence [ 22 ], and the preference of some clients for face to face consultations [ 23 ]. Telehealth has been used for assessment and rehabilitation in speech pathology, with clients reporting high satisfaction with the process [ 24 ].
Some consumers are also willing to adopt eHealth solutions despite some challenges in service dissemination [ 25 ]. Unfortunately, sometimes access to the appropriate information to engage with communication technology is particularly difficult for those who need it most [ 26 ]. The Australian government NBN rollout is expected to extend the use of telehealth to aged, palliative and cancer care services as mainstream consultation options [ 27 ]. While the health system moves into the information age, it is assumed that consumers are keeping up with the pace.
Literature highlights the importance of early education and decision making about communication technology in recognition of the need and potential of various devices for people with MND [ 9 , 11 ]. Caregivers, family, doctors and allied health professionals are recognized as important contributors to this process, which should begin well before AAC is needed as a substantial communications support. Therefore, this exploratory study aimed to investigate the types of technology hardware and software used by people with MND to communicate, their confidence and skill levels relating to technology, their perceived barriers to the use of technology for communication and their willingness to modify or update modes of communication, especially when interacting with support organizations and health professionals.
A cross-sectional self-administered online survey was developed as a time and cost-efficient method of gathering data from people with MND who may have motor and speech difficulties. The researchers completed a module Web-based MND training course for professionals prior to developing the survey [ 28 ] to ensure they fully understood the key issues for people with MND. The item technology survey encompassed three major themes: communication technology devices including AAC eg, desktop and tablet computers , information sourcing eg, Internet, social media and communication methods eg, email, VoIP.
The objective was to collect detailed, specific data across a wide spectrum of topics without tiring the participants, so many questions had multiple tick box options. The draft survey was tested amongst the authors and piloted with informal contacts before being reviewed by MND NSW staff with expertise in the needs of people with MND. The final survey contained 18 closed-ended questions, each with space for free text comments, and 2 open-ended questions for free text responses at the conclusion of the survey. The survey can be seen in Multimedia Appendix 1. SurveyMonkey was chosen as the platform for the Web-based delivery of the survey system.
Study participants were given a choice of response methods depending on their preferences and capacity: 1 completing the survey online, independently, 2 completing and returning a mailed hard copy of the survey or 3 verbally responding to questions with a researcher by telephone. Questions were identical across all response methods. Consenting participants indicated if they were willing to be contacted by researchers, and identified their preferred method of contact on a consent form.
MND NSW staff distributed hard copies of the survey and reply-paid envelopes to participants requiring them, and sent an email to participants requesting the link to the Web-based survey. MND NSW staff provided researchers with the contact details of participants requesting a telephone interview to complete the survey.
The survey remained open for 2 weeks. Carers were also eligible if they spoke on behalf of the person with MND. Descriptive statistics were used to summarize frequencies and cross tabulations. Free text data or participant responses from telephone interviews to the open ended questions were consensus coded and analyzed using thematic analysis [ 29 ]. A total of 79 completed surveys were returned. See Table 1 for further details. As the survey was anonymous, we were unable to determine the characteristics of those members who did not participate in the study.
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However, there was an under-representation of those diagnosed within the previous 6 months 4. Of those surveyed, 4 respondents were unable to communicate in any mode speaking, writing or typing , without assistance. Table 3 shows that more respondents aged had impairments across the communication modes. Fewer respondents aged 70 and over were using any aids or equipment for communication. There were no differences in usage between rural and urban respondents.
Webcams were the most popular assistive device, used by 10 respondents see Table 2. Free text and verbal comments were provided by 57 respondents about devices used to augment speech.
SpeakIt was the most frequent app identified by name by 5 respondents. These apps and programs were used on a range of devices. Laser head pointers and hands-free computer mice were used by 3 respondents, while 5 indicated they used boards or cards to assist with communication. Of these, 4 were aged over 70, 2 were and 2 were , with half of them reporting they did not have the physical ability to use a desktop computer. Can use my iPad when away from home. Previously only used iPad for Speakit application.
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Friends and the Internet were also popular sources of technology advice. Of allied health professionals, speech therapists were the most common sources of advice, followed by occupational therapists. Overall, respondents were considerably more confident than not with all forms of technology identified in the survey Figure 1. However, levels of confidence were related to age. When asked about adaptive devices, 2 respondents owned SmartNav or a laser head pointer but were unable to use them.
One respondent had an Android tablet and an iPad, and found the Android version more difficult to use. Cost was selected as a barrier by 7 respondents, regardless of the type of computer. A lack of computer literacy was mentioned by 3 respondents. Respondents were asked how willing they would be to use email and Internet video phone programs such as Skype to communicate with health professionals and others, if provided with the necessary equipment and skills. When related to age, Table 3 indicates that email was already used by many respondents as a communication strategy.