Participation Phase (King's Phase 3)
In the participation phase (King's phase 3), there are progressive limitations in arm functions, mobility and communication. In this phase, there is a feeling of losing independence and participation in social life. Therefore, it is now important that affected persons use strategies and technologies that can support them in their autonomy and social participation.
In this phase, the chronicle presents suitable offers to compensate for limitations in arm function (robotics in ALS), mobility (electromobility in ALS and control with eye movement) and communication (communication aids in ALS).
Phase of participation with nutritional support and/or ventilation, (King's Phase 4):
In this phase of the disease, the affected person receives nutrition via a feeding tube and/or ventilation. Questions about participation with a feeding tube and/or ventilation become more important. Improving or maintaining the quality of life with a feeding tube and/or ventilation becomes the focus of treatment.
An important role is played by the provision of suitable aids to compensate for motor function restrictions. The chronicle therefore presents offers for the supply of robotics, electromobility and communication aids in ALS. In King's Phase 4, there are open research questions about the utility and use of feeding tubes (PEG tubes) in ALS. Therefore, the Chronicle provides a link to information about a medical trial of PEG feeding in ALS.
The chronicle and the content in the disease phases will be supplemented and further developed in the future. As a result, a specialized range of information based on the course of the disease and the current state of research is to be created.
Communication of the need for care
The design of the notification of a supply requirement for aids or medications has been revised. If aids are needed, several categories are available in the app, ranging from breathing aids to transfer aids. For example, the need for aids for the living environment, a communication aid or nursing aids can be communicated via the app. After communicating your need via the app, you will be contacted by your case managers to plan the next steps for providing you with an assistive device.
If the app indicates that a neurological medication is needed, your case managers are notified immediately. They will take care of your supply of a new or an existing medication. In addition, the app also provides the option to communicate the need for a neurological medication consultation. The user will then be contacted and advised by a pharmacy specializing in ALS at the earliest possible time.