A personalized road map for navigating life with MS
Stephen Persaud, a dairy manager for IGA, first noticed his fatigue as he unloaded the heavy pallets of milk from the truck. Over the next six months, his fatigue grew, then he noticed a slight limp. It was his colleagues’ concern that led him to make an appointment with his doctor.
At 29 years old, he was diagnosed with multiple sclerosis (MS). MS is a complex neurological disease that attacks the myelin, the protective covering around the nerves of the central nervous system. It is an unpredictable disease and Persaud had no way to know how the disease would progress.
MS affects every person differently. Some experience mild symptoms for years, and others will experience episodes of relapsing and remitting. Relapses can also be unpredictable: one time, a person’s leg might go numb and the next time, they’ll have vision problems.
The uncertainty of the disease makes it difficult to plan one’s life. A group of stakeholders were reflecting on this at a meeting of the MS Society, Alberta and Northwest Territories Division, when one woman offered, “We need a GPS for MS.”
Individuals are often overwhelmed by the planning required to live with MS. “They need someone who can guide them through all the different systems: government departments, insurance companies, medical systems,” says Valerie Borggarg, coordinator of the MS Society, Alberta and Northwest Territories Division’s new MSGPS pilot program. “They need someone who can put it all together, and when they reach a barrier, problem solve how to get around the road block.”
“For many people, one of the hardest things to face with a life of MS is admitting that their life will be different than they planned.”
After being diagnosed, Persaud says, “My dining room table was full of papers – the first year was basically paperwork related to long-term disability benefits. At first I didn’t know what I was entitled to. Now, I just bring the paper work to Valerie and she walks me through it.”
Funded in part by Edmonton Community Foundation, the MSGPS pilot project started in November 2012. Borggarg is a social worker by training but she’s become an expert at reading fine print on insurance claims, and making difficult technical jargon make sense. She is an advocate and master planner. She is a human GPS.
Every individual presents her with their unique ‘road blocks.’ Some, like Persaud, need help establishing long-term financial stability. Others must navigate government systems for help they never thought they’d require. Accessible housing, childcare, and social supports are frequent needs. For many, there is the fatigue that descends like fog and makes upcoming problems virtually impossible to anticipate.
“For many people, one of the hardest things to face with a life of MS is admitting that their life will be different than they planned,” says Borggarg. What many individuals need is support in the process of re-imagining their life plan.
By helping him work out long-term disability benefits with his private insurer, Borggarg has relieved Persaud of significant stress. Persaud says, “With MS I can still have goals; only now, how I get there looks a little different.”