ROB’S STORY
Rob was diagnosed with Duchenne Muscular Dystrophy when he was five years old. He
was always a very determined and independent child and this was most evident in the fact
that he was able to walk much longer than the doctors predicted. As a matter of fact,
when he was first diagnosed, we were told that he would not live to be a teenager.
He faced each challenge with his usual easygoing good humour and total acceptance.
When Rob started high school, he was no longer able to walk on his own and got his first
electric wheelchair. This gave him more independence.
Rob graduated from Canterbury High School and then attended Algonquin College where
he earned his degree in Business Administration majoring in Accounting.
He worked as long as he was physically able to do so.
Rob taught himself to use a computer and became very computer literate – all self-taught.
He could do anything on a computer.
In the summer of 1997 at the age of 27, Rob went into respiratory arrest and was rushed
to the Ottawa Civic Hospital, where he spent nine months in the Intensive Care Unit. The
doctors performed a tracheotomy and he breathed with the help of a ventilator. He would
be on a vent for the rest of his life. They also inserted a feeding tube as he was unable to
swallow food. Through sheer determination, Rob was soon able to talk and then take
food by mouth. The feeding tube was removed.
Rob continued to improve and in early 1998 there was talk of him being moved to
another facility such as Elizabeth Bruyere or St. Vincent’s Hospital. Then Civic Hospital
staff began talking to Executive Director of PCIL and it was thought that Rob would be
able to move into the Group Home run by PCIL/CPVA. We went on a tour of the home
and were welcomed by both staff and residents.
Several meetings took place at the Civic Hospital and on one occasion mention was made
of an accessible apartment on Bronson Avenue in downtown Ottawa. Another tour was
arranged, this time to a two bedroom apartment which was completely wheelchair
accessible. We were quite impressed with the facility and it was explained to Rob that
before he moved into the apartment, an environmental control system would be installed
which would enable him to live on his own in the apartment, but that 24-hour attendant
care would be available to him. In case of an emergency, attendants could get to his
apartment in a very short time.
This was a very exciting time and things were progressing very quickly to get the
apartment ready for Rob to move in. Up until the time Rob was rushed to the Civic
Hospital in August of 1997, we had always expected that he would live at home. Never
did we think that he would be able to live on his own! We had never heard of PCIL.
Rob lived quite contentedly in his apartment and was served by very caring and talented
staff. After a couple of years on Bronson Avenue, an opportunity presented itself in
which Rob was able to move to a one bedroom, one level townhouse in the Carpenter
Housing Co-operative.
He was very happy and much more independent in the townhouse, as he was able to leave
his house and tour around the complex on his own and visit with and get to know his
neighbours. He had an environmental control system installed in the house which
enabled him to come and go more freely than before. Rob also programmed his lights,
air conditioner, heat, front door opener and many other things into his computer and/or
the joystick on his wheelchair so he was able to work them on his own. This gave him
much more independence.
The staff at PCIL are most caring and always eager to do what they can to make life
easier and more pleasant for their disabled clients.
Rob enjoyed living both on Bronson and at the Carpenter Co-op. On many occasions
over the last couple of years, he had to be admitted to hospital as his health deteriorated
and became more fragile. He was always welcomed home by the attendants and we felt
that he received as good and sometimes even better care at home than some hospital visits.
In August of 2007 at the age of 37, Rob’s health had deteriorated further and another
feeding tube had to be inserted. This time his body couldn’t fight the latest infection, and
he passed away at the end of August at home where he wanted to be. The PCIL staff kept
him as comfortable as they could and always treated him with great respect, and for that
our family will always be grateful.
Author Rob’s mother: Carol Collins