**5. Conclusion**

674 Amyotrophic Lateral Sclerosis

user acceptability over the RCP, thus providing a substantially more effective BCI, which is so important for PALS management. Experimental data showed that, whereas average PALS performances were much lower than those of the healthy controls using the RCP, upon switching to the CBP, PALS performed only slightly lower than the healthy controls: patients improved their classification accuracy rates by an average of about 25 % after switching from the RCP to the CBP, whereas accuracy rates of control group improved only of 14 %, thus suggesting that the CBP improvements may be more pronounced for PALS than for healthy controls. In particular, for two patients, the improvement brought them into an accuracy range sufficient for effective BCI control, while previously their accuracy was

Non-invasive BCI methods have been utilized more extensively than invasive methods for people with disabilities (Birbaumer & Cohen, 2007; Birbaumer et al., 2008; Gerven et al., 2009): unfortunately, whereas PALS and other patients in "locked-in" conditions have motivated research in this area, very few systems have been successfully used - such as that reported by Townsend and co-workers (2010). It has been postulated that some forms of cognitive impairment and changes in EEG signatures in late ALS stages may contribute to the lack of success using BCI technology (Iversen et al., 2008), as the technology was introduced after the participants had become "locked-in" (Gerven et al., 2009; Münte et al., 1998): really, the most successful application for communication has occurred in people at the beginning stages of ALS (Birbaumer et al., 1999; Birbaumer, 2006; Kubler et

Nowadays, AAC acceptance and use represent two areas of interest for physicians and

In the Ball et al.'s review (2004b), those who rejected AAC had a co-occurring cognitive

Fried-Oken and co-workers (2006) reported very positive caregivers' attitudes toward AAC technology: those with greater AAC technology skills got greater rewards associated with

In a follow-up study on 15 PALS, Ball and co-workers (2010) examined the acceptance, training, and extended use patterns of eye-tracking technology to support communication. For 53% of the participants, eye-tracking technology was selected because eye movement was the only viable access option available. More than 90% of the participants reported successful implementation of the technology: the only one patient who was not able to successfully use eye-tracking technology had difficulty with eyelid control. The communicative functions served by eye-tracking devices were extensive: all of the participants used their device to support face-to-face communication, and other functions included group communication, phone, e-mail and internet. More than 40% of the participants also reported using the eye-tracking technology to support other computer-

Training and support are an essential component of AAC service delivery for PALS. The significant changes in movement abilities require that service providers not only be proactive in their AAC technology recommendations by fitting up technology options that can meet the changing physical needs over time, but also by supplying adequate training and support to ensure that PALS and their caregivers can successfully implement diachronically these access strategies. Reports of low AAC use often are related to

deficit or experienced a severe diseases, such as cancer, in addition to ALS.

based functions (e.g., word processing, voice-related software programs).

descriptions of minimal training or follow-up (Murphy, 2004).

not consistently enough for effective control.

scientists. Both involve PALS and their caregivers.

al., 2001).

caregiving.

Multifunctional impairments of PALS result from a relentlessly progressive muscle weakness, leading ultimately to a widespread body paralysis. In the late disease stages, patients eventually find themselves in a "locked-in" state, totally unable to move neck, trunk and limbs; autonomously breath and feed; and speak, although most of them retain their cognitive skills, thereby assisting impotent at their dreadful somatic decay.

As human beings, and therefore "persons", namely "individuals within a network of relationships", PALS particularly suffer from communication impairment.

Today, much more than in the past, we are able to give interdisciplinary assistance to them, enhancing their possibilities of keeping in touch with their caregivers, friends and other persons, with the aim to maintain their quality of life as high as possible.

Further research is needed to better implement AAC devices and services (trying to optimize communication aids and interfaces, and increase our understanding of acceptance and use of AAC approaches); and to develop new intervention strategies and document their effectiveness.

Anyway, besides scientific and clinical achievements, we look forward to building up in the near future more empathic care strategies for PALS and their families, with respect to them in their dignity of suffering persons.
