Quality of Life

What does quality of life mean?

By Joe Pivato

For the people in our home ‘quality of life’ means that a person as severely disabled as Alexis should be able to do as many things as she can. It also means that she should be able to enjoy many of the normal things that we all enjoy: good food, interesting music, physical exercise, the outdoors, the change in the seasons, travel, water activities and friendships. Alexis is cortically blind so she lives in a world of sound. We keep a variety of music playing around her during her waking hours: that is from 8:00AM to 10:00 PM. When we watch TV or movies together she does not see them but she listens along with us and shares in the experience of the sound effects and different voices. She must hear them differently than we do. She seems to recognize different people by their voice. Alberta has lots of sunshine in both winter and summer, so Alexis is outside every day. In the summer she often eats her breakfast, lunch and dinner out on her deck listening to the birds and squirrels in the backyard. The Alberta magpies can be very noisy some mornings.

Like everybody, Alexis has family, friends, and associates (her assistants) around her regularly. She likes people and does not want to be alone. One of the ways that Alexis maintains a good quality of life is through her regular physiotherapy program. The fine motor exercises and the gross motor exercises that she does every day with the help of her assistants keep her healthy and prevent further deterioration of muscles, bones and limbs. All of Alexis’ assistants are trained to carry out the program. She also likes being in her standing frame and using her electric foot pedal bicycle, as well as certain other pieces of therapy equipment we have found to be particularly effective for her.

Over the years Alexis has enjoyed going to many of the cultural activities in the city of Edmonton: the Winspear Centre for Music, the Edmonton Art Gallery, the Royal Alberta Museum, The Space Sciences Centre, the Muttart Conservatory, The Zoo, Fort Edmonton Park, City Hall Square, the public library, movies, and of course, West Edmonton Mall. She also occasionally visits the Devonian Gardens south of Edmonton.

Beyond Edmonton, Alexis has travelled to Mexico’s beaches 13 times, the Rocky Mountains, Jasper, Banff and Canmore. In 2009 she went to Chicago for her sister’s graduation from SAIC for her MFA degree. She has also been to Toronto, Calgary, Drumheller and Wainwright, Alberta as well as to Toronto on several occasions when she was younger to visit her grandparents and other relatives.

As a small child Alexis learned to judge people by listening carefully to their voices and words. Alexis does not speak any formal language but makes her own sounds. Like all of us she wants to be heard, understood and respected.