Long-Term Specialty Care - Community Living / February 28, 2023
I didn’t plan to be a caregiver, although I kind of flirted with the idea during my college years. I worked in patient care in a hospital for a while. I worked for a funeral home for a while. I was accepted into medical school and then decided not to go. Instead, I went into the field of geology, specializing in geochemistry.
Our son Terry was born with a rare inherited disease called Pelizaeus-Merzbacher Disease. The defective gene that causes the symptoms is sex linked. It is carried by the female and affects male babies at a ratio of 1:1. At the time of our marriage in 1964, Connie had both close and distant male relatives who had the disease, but it was not well understood and usually referred to as cerebral palsy. At the time of Terry’s birth in 1970, the disease was better understood. Genetic studies before his birth indicated that Connie wasn’t a carrier of the defective gene. A few months after his birth, he showed symptoms of the disease. Obviously, the genetic studies were inadequate at that time.
Community Advantage became part of Terry’s life in March 2011. An Individual Plan revision at that time changed a listed provider from “To be determined” to “Community Advantage.” April 2012 was Terry’s first Individual Plan meeting where a representative of Community Advantage was present.
Beginning April 2011, Community Advantage furnished someone to take Terry bowling, usually once each week, an activity he enjoyed very much. Soon after the bowling started, someone from Community Advantage took him on outings to parks, shopping centers, and elsewhere two more days each week. These three-per-week outings continued until March 2015 when he became part of the Community Advantage Day Program in Longmont. He was part of the day program until it was closed March 2020 because of the Covid-19 pandemic and was closed permanently a couple of months later. Home-based services continue until now.
We moved into our present home the day Terry was born. He has known no other home. I want this to continue as long as I can care for him, with the help of Community Advantage, my family, and others. My philosophy of care is simple. I love my son and want him to be as healthy and as happy as possible.
To read Gary’s complete Community Advantage Story, please click here.