Study Of MS By And For Patients, Families

Posted by Cecilia Nasmith

Caption: Jerry Ford will be overseeing a survey on the social impact of living with multiple sclerosis, using data supplied by international respondents.

Photo by Ted Amsden

The effects of multiple sclerosis on those who live with it (and on their friends, families and care givers) is the focus of a Cobourg man's study - a project for which he is seeking volunteer participants.

Jerry Ford describes MS as a neurological disease that damages the insulation, or myelin, that covers nerves, causing short circuits and unpredictable systems failure, in much the same way that faulty insulation would affect an electric appliance.

Both Mr. Ford and his wife Christine Bayer have personally been living with MS, for 31 years and eight years respectively.

Intimately familiar with the challenges faced by those with MS, he is looking to compile a study that focuses on the people who live them - a user's-handbook approach with practical advice from people who know the issues best, as opposed to scientific information from a medical or pharmaceutical perspective.

"In my prior business life I had a great deal of experience developing surveys and conducting studies," Mr Ford said. "My decision to undertake this project has arisen simply because there is a significant lack of understanding about the social disruption a diagnosis of MS can have on the person involved and their immediate family."

In short, he added, he wants to create a study by persons with MS for the benefit of persons with MS.

"Much of what we have is written by the experts," he explained. "My intent is to prepare a document that reflects the perspectives and viewpoints of the people involved at the ground level.

"The intent is that the final product will provide workable information for people searching for information and answers, written in plain language," he said - "not a scientific document."

Because anyone with MS can find even short trips daunting, Mr. Ford plans to gather much of his data through online contact.

At this point, he is developing the survey and the protocol to be followed. Then he would like to address the survey to as broad an audience as possible (including respondents across Canada, the United States, Australia and New Zealand, through an international group to which he and Ms. Bayer belong). Mr. Ford is also looking for local people with MS to participate, and for participants who are living with people with MS. If you are in either category and would like to be part of the project, you can contact Mr. Ford at jford@eagle.ca

More mobility related articles.