February 17th, 2021
A Small Device that brings Big Benefits
- An iPad and Predictable app transform lives
- Device is instrumental in maintaining social circle and network
The IMNDA helps people who have been diagnosed with MND/ALS in a variety of ways. It supplies mobility aids to those who cannot walk unaided, communication devices to those who cannot talk, and care packages to people who need assistance with personal or home care.
Some users and their carers explain the impact of the iPad and Predictable App on their lives. They recount how the device helps them from day to day. Each person has been using the app for approximately three years. Combined, they have amassed significant experience and knowledge. Their names have been changed to protect their privacy.
In addition, Tracy Hutchin, IMNDA Services Manager, also contributed. She explains the association’s policy regarding these devices.
The communication package transforms the lives of the people who depend on it to communicate – and also of their nearest and dearest. It becomes an essential piece of equipment which they use intensively throughout the day.
Frances, in Donegal, explains via email how indispensable the device is, “I do not have the ability to speak at all, so it’s my only way of communicating with family and friends. I just could not count the number of times in a day I use it.”
Cathy, in Carlow, also describes the device as absolutely essential, “Quite simply, I would be lost without the iPad for speech.”
Communication is how we relate to other people. It is impossible to overestimate the freedom that the iPad brings. The ripple effects are also considerable. Users and carers describe the many ways that the iPad helps them and those with whom they come in contact:
* Minutiae of everyday life
Difficulty in communication is extremely stressful for everybody, the people themselves and those who live with them. One carer explains, “It became so frustrating for all of us when my husband could no longer talk”. She points out that the device helped with the smallest and simplest of things – what to wear, what to eat, where to go…
It opens up conversation – without the need for speech – with everyone, in every situation and setting. Frances explains, “I use my iPad with everyone I meet – family, friends, doctors, shop assistants.”
Cathy writes, “I use it with family and friends I see daily or regularly. I use it for everyone I am in contact with. It’s invaluable for everyday living and communicating with people”.
* Social circle
The iPad and app are instrumental in maintaining and strengthening social circles. As speech becomes slurred and deteriorates, those outside the immediate family can struggle to understand what is being said.
Emily, a carer in Galway, explains, “It’s like when a parent knows what the child is saying but no-one else does”. There can be embarrassment or awkwardness; there may be fewer callers or visitors. The iPad liberates and brings back normality.
* Part of the conversation
People can be unwittingly excluded from group conversations as they jump from person to person and from topic to topic. By the time it takes to type a response, the conversation can have moved on many times. The Predictable app speeds up words and allows sentences to be formed more quickly.
Frances writes, “The iPad makes it faster to communicate while in conversation with people as the words appear.”
The Predictable app is used to personalise their communication in any number of ways. Users appreciate two specific features:
* “What’s the craic?”
Phrases or prepared messages can be stored in a phrase bank for quick access. These can be the usual conversation openers such as “How are you?” or “Were the shops busy?” Others store more colloquial – and familiar – turns of phrase, such as “What’s the craic?”
* A person, not a computer
Another popular feature is the ability to choose the accent or voice that speaks the text.
Frances writes, “I have selected an Irish woman’s accent as the others sounded really unfamiliar – more like a computer than an actual person”
Cathy explains, “I have chosen an Irish accent. It’s more local and helps with familiarity.”
The iPad packs a lot of features that can be used for a host of other activities, such as reading, learning and playing.
Cathy explains, “I use the iPad intensively – for shopping online, for reading, keeping up-to-date with current affairs. For example, I am doing this with Notepad.”
Emily notes, “This is a smartbox that becomes your voice, email account, mobile, everything. You talk to it. It talks back.”
All users and carers express their gratitude to the IMNDA for its help and practical support.
Emily explains, “I do not know what would have become of us without the IMNDA. It became part of the family. They are so efficient. I could send an email one day, receive a reply that afternoon and the piece of equipment would arrive on the following day.”
Each year the association buys approximately 25-30 iPads for distribution. Tracy notes, “The cost is relatively low compared to the benefits which are high.”
IMNDA currently spends from €20,000 to €30,000 on these devices and last year alone spent over €111,000 in total on communication aids. Every cent of which comes from donations and fundraising. Roisin Duffy, CEO of IMNDA, adds, “There is such a huge demand for these iPads at present.”
The value these devices offer are priceless. They give someone back their voice, they allow people to communicate with their loved ones.
1) Helping those who can’t talk
Difficulty in speaking is a symptom that over 80% of people with MND can experience. Some speak with difficulty while others lose their voice and cannot communicate. The IMNDA gives these people the ability – an iPad and Predictable app – to connect to the world.
- Predictable is a text-to-speech application. The user types out the words and so gives a voice to people who are unable to use their own. People with good manual dexterity type words on the keyboard, while those, without sufficient strength, can operate the device by tapping a switch.
- IPad is a small machine. Lightweight and portable it can be carried anywhere. Crucially, it doesn’t spell “disability” nor look like a device for the disabled. It allows users to be out and about and to blend in with everyone else and their tech devices.
The iPad, once loaded with the Predictable app, is a major improvement on the rudimentary alternatives of yesteryear. One user recalls how she had to carry a whiteboard and notepads around with her.
2) Number of devices
The IMNDA has, to date, distributed some 300 iPads with Predictable apps to their members in Ireland. It is such an essential aid that the association usually holds three to four devices in stock in order to speed up the process. Tracy from the IMNDA explains, “We want to be as responsive to people’s needs as possible”
3) Reuse, recycle
IMNDA policy is to maximise usage of every device. Unwanted devices are returned to the association. They are de-contaminated and prepared for re-use. Tracy notes “This practice means that approximately two to three people are able to benefit from each device”.