In 1998 Kari saw an article in a Finnish public magazine (Suomen Kuvalehti 13/1998) that deeply touched him. It was a heartbreaking story about a young, beautiful woman -- Kati -- who suffered from the locked-in syndrome caused by a brainstem stroke. She communicated by eye movements. Kari immediately thought about the eye tracking device that had been purchased a couple of years earlier for research purposes: could it be used to help Kati?
A couple of years later, when Päivi joined the gaze research group, Kari showed the article to Päivi saying: "If we could help even one like her, it would be worth it." Päivi was eager to meet the challenge, but it was decided that we would proceed cautiously, without making promises before we really could suggest a solution in which we had enough confidence ourselves.
The story was still in our minds when COGAIN started. In the very first "real" COGAIN office meeting in the end of August 2004 Kari went to his bookshelf and gave the article to Stina. Stina did some detective work, and a few weeks later the three of us were heading towards Mikkeli to meet Kati.
We were really excited to meet her. During the three hour drive we discussed what we should say and how we should act. The nervousness soon disappeared when Kati's parents sincerely welcomed us. Kati sat in her wheelchair and welcomed us with her smiling eyes. She looked strikingly beautiful. It was not hard to believe that she had acted as an international model before the stroke.
Kati discussed with us by moving her eyes. Her mother acted as a human eye tracker, interpreting the eye movements letter by letter. Kati has a see-through communication board made of plexiglass, but she and her mother haven't needed it for a long time. They have memorized the locations of the letters; each letter has its position in the air. It was fascinating to see how Kati's mother was able to correct mistakes in the letter interpretation, and how she guessed the end of the word or the sentence, sometimes after just one or two letters -- the best intelligent word prediction system we have ever seen!
Kati has enough head movement control to be able to use a head tracker. The system tracks a small sticker in her forehead. She not only writes email and browses the Internet, but she is also writing a book. It should come out in 2006.
Kati uses her computer a lot but it doesn't help her when she is on the move. She expressed a desire to have a portable system that could be used anywhere. She loves to travel, and it would really help in communicating with other people. Currently, she relies on her personal interpreter: her mother. It makes Kati sad that people are often scared of communicating with her, and using the plexi-board is not that easy either.
She had an environmental control system attached to her bed but she wanted it to be removed because it was so ugly. "If you spend a lot of time at home, you want beautiful things around you."
We brought the Tobii eye tracking device and a laptop with us. Despite some demo effects in the beginning, Kati was able to try out iKey and Dasher. She laughed aloud, especially when the Finnish male synthesizer spoke what she had typed. Her mother asked if it would be possible to use Kati's own voice from the old home videos as a basis for the spoken feedback. This is already on COGAIN's to-do list, and the visit convinced us of the importance of this line of research.
Meeting Kati was an event we will cherish. She totally charmed us with her wonderful sense of humour and positive attitude. She gave us a lot of motivation, ideas and insights that will definitely benefit COGAIN. We agreed to stay in contact.
Päivi Majaranta 2.10.2004
Kati visited the COGAIN 2005 event in Copenhagen, tried out many systems and had a lot of fun with Mick and others.
Kati visited the Tampere team in May 2006 at the same time as the developers of i4Control from CTU. The system could be used to remotely control a toy car: by looking up the toy car goes ahead, by looking left the car turns left, etc.
In early 2006, Kati released a book (in Finnish), called "Silmänräpäys" (Eng. "eye blink"), written by Kati Lepistö & Leeni Peltonen, published by Otava. The book tells Kati's story. There is also a short section about Kati's involvement in COGAIN. The second author, journalist Leeni Peltonen, is the one who wrote the original article in Suomen Kuvalehti (13/1998) that touched us so deeply.
In 2019, Kati van der Hoeven (surname changed after Kati got married) released a book in English, called "Living Underwater: A true story of laughter, love, hope and happiness in the face of extreme adversity". The book is available via Amazon.com. COGAIN is briefly mentioned also in this new book.