-
Notifications
You must be signed in to change notification settings - Fork 0
Home
The Hedyweb Messaging System (HMS) is a collection of messaging capabilities and content services that enable her parents and the staff at Alpha Supported Living Systems to manage her daily care but also respond to medical emergencies and alerts.
Hedy suffers from a rare genetic disorder called Phelan-McDermid Syndrome. She cannot speak, and is unable to convey her condition; we are totally reliant on visual identification to determine her situation.
It is not uncommon for sufferers of Phelan-McDermid to start to experience seizures when they enter adolescence, and that has been true for Hedy as well.
The seizures themselves are difficult enough, but just as often the post-seizure (postictal) period presents its own challenges. In Hedy's case, the postictal period can last days. Seizure medicines are very powerful and can create their own problems ( toxicity, nausea, agitation, hallucinations, etc.) and after tonic-clonic seizures medication levels vary, spike, and can interact in ways that make her condition (or their effectiveness) worse rather than better. In addition, the medical protocol can change, and awareness of her sleep and agitation levels is critical in making PRN decisions around medication response.
Technology and messaging capabilities can potentially help. Hedy wears the Embrace Empatica watch, which has monitoring and alert capabilities, however access to raw data is limited. We also hope to collaborate with the MirrorHR Fight the Stroke initiative that won the 2019 Microsoft Hackathon to integrate the monitoring and alert capabilities of these tools to help caregivers and medical staff get the best data possible to diagnose and treat Hedy's condition.
Outside of her medical fragility, simple day-to-day oversight of Hedy presents challenges. Because she cannot communicate independently as many disabled adults can, all communication with Hedy is done via the people currently providing her care: caregiving staff, parents, and Alpha support teams (principally medical, but also activity planning, etc.). Hedy can interact with more than 10-15 people over the course of a week of 24/7 care and with different roles and responsibilities. Even simple coordination tasks such as arranging to pick her up and drop her off are complicated if the current caregivers are out in the community with Hedy. It shouldn't require a multi-text ask of multiple people to find out the caregiver was in the building working on Hedy's laundry when Dad shows up to drop her off after a morning drive (in this case, our answer is an automated text to the on-duty staff, no phonebook required)
Given all these parameters, we intend for HMS to afford better communication and coordination around her daily management and care, with the hope that what we build here is useful to others with similar messaging and oversight needs. Please join us.