Communication Device for an ALS Patient
Donation protected
I have had ALS since 2005. It began with weakness in my right hand and slowly spread throughout my body. I was diagnosed in May 2007 - at that time I was mother to 5-month-old twin daughters and a 3-year-old girl. My husband had to take parental leave because I couldn't dress my babies or change their diapers. In 2008, I began to have difficulty speaking. In 2009, I became wheelchair dependent. In 2010, I was hospitalized with pneumonia and was given a tracheotomy.
Since then, I have been completely unable to speak and have relied upon a communication device for speaking. Currently I rent a device called a Dynavox from my ALS clinic at Sunnybrook Hospital for $80 a month. It is very slow, crashes a lot and breaks down frequently. I'm on my third machine right now because the previous two have died.
I have the opportunity to buy a different kind of communication device, called an EyeSpeak: https://www.kickstarter.com/projects/886924859/eyespeak-beyond-communication
Early adopters can get the device for $1730US plus shipping, which is roughly equivalent to $1931 in Canadian funds. Besides the cost of the device and shipping, we will have to pay customs and duty tax on it as well. I have no idea how much duty should be paid for such a device.
After the early adopter phase is over, the price goes up by a thousand US dollars. I have never asked for money for myself before - I usually fundraise for other ALS families who are having hard times or friends who are doing walks for ALS charities - but I am convinced that the EyeSpeak will improve my quality of life and enable me to communicate more effectively with my caregivers and family. When I die from this disease, I pledge to pass this device on to another person living with ALS. Please help me and you will have my undying gratitude!
Peace and Love,
Ellen
Since then, I have been completely unable to speak and have relied upon a communication device for speaking. Currently I rent a device called a Dynavox from my ALS clinic at Sunnybrook Hospital for $80 a month. It is very slow, crashes a lot and breaks down frequently. I'm on my third machine right now because the previous two have died.
I have the opportunity to buy a different kind of communication device, called an EyeSpeak: https://www.kickstarter.com/projects/886924859/eyespeak-beyond-communication
Early adopters can get the device for $1730US plus shipping, which is roughly equivalent to $1931 in Canadian funds. Besides the cost of the device and shipping, we will have to pay customs and duty tax on it as well. I have no idea how much duty should be paid for such a device.
After the early adopter phase is over, the price goes up by a thousand US dollars. I have never asked for money for myself before - I usually fundraise for other ALS families who are having hard times or friends who are doing walks for ALS charities - but I am convinced that the EyeSpeak will improve my quality of life and enable me to communicate more effectively with my caregivers and family. When I die from this disease, I pledge to pass this device on to another person living with ALS. Please help me and you will have my undying gratitude!
Peace and Love,
Ellen
Organizer
Ellen Swindall-Bailey
Organizer
Toronto, ON
