I woke up one morning and something was missing

I went looking

I searched and searched all dayAll day long I wanted to askHave you seen? Do you know? Where did I go? The person that I wasShe’s goneShe’s not meShe’s not me anymoreI don’t even see her in your eyes anymoreCan you tell me where I went?I miss me

(written by Laurie)

Laurie lives with multiple sclerosis. MS is a progressive disease of the immune system and can worsen over time. Symptoms vary by the individual.

The National MS Society describes MS as “an upredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.”

For those living with multiple sclerosis, the disease can affect the brain, spinal cord and optic nerves in the eyes. MS can affect vision, balance, mobility, muscle control, speech and basic body functions. It is an abnormal response of the body’s immune system against the central nervous system.

For people like Laurie, living with MS presents a radical lifestyle shift.

We do not know the specific cause of MS, but it is believed a combination of genetic susceptibility, immune system abnormalities and environmental factors may play a role.

There is no cure for MS, and clinical research is under way throughout the United States evaluating study products to treat some of the symptoms. MS affects different people in different ways. There is no “one size fits all” pattern to the disease. More than 2.3 people in the world are living with multiple sclerosis.

Laurie, who has run peer support groups for those living with MS, was diagnosed with the disease just before her 40th birthday. She recalls having symptoms of MS as early as the age of 10. She remembers being in severe muscle pain and unable to breathe until her father physically moved her.

Laurie now realizes as early as 10 she experienced the “MS hug,” a series of symptoms caused by spasms to the intercostal muscles. As the years passed her symptoms worsened and at one point prior to her diagnosis, she feared she was living with ALS, also known as Lou Gehrig’s disease.

There was a sense of relief she experienced when she finally received her MS diagnosis. Her lifetime of symptoms was finally given a name.

Prior to her MS advancing, Laurie says she used to love to run, bike, dance and sing. She still is able to share her gift of song with others but can no longer dance, run or bike like she once did. She has been told she might ultimately be in a wheelchair. She is concerned she is not the person she once was. Laurie has said MS takes quite a bit away from you, even if it means “I don’t know the answers like I used to,” when watching Jeopardy. From the complex to the simple, Laurie’s life, along with the lives of others living with MS, can dramatically change.

In New London at Coastal Connecticut Research, neurologist Dr. Laurence Radin and Andrea Stewart, APRN, are serving as investigators on an MS clinical research study evaluating a medication for people with MS whose walking has been affected by the disease. The study is being conducted nationwide and is listed on the National MS Foundation website for those who may wish to learn more as well as www.CCRstudies.com.

Diane Palmer, site administrator at Coastal Connecticut Research, was a proud participant in this year’s MS walk in Waterford on April 28th, raising awareness for the disease.

For people like Laurie, MS presents a series of challenges many will never have to face. Research provides hope that someday we can move forward to improve the lives of people affected by multiple sclerosis.

MaryLou Gannotti is the Director of Public Relations and Communications at Coastal Connecticut Research in New London. She can be reached at marylou@ccrstudies.com.