Weekes: Speak about MS

PRESIDENT Paula Mae Weekes yesterday advised patients with multiple sclerosis (MS) to let their pains be known.

Weekes gave this advice during her address to patients and members of the MS Support Foundation of TT’s during its commemoration of world MS Day – which was celebrated on May 30 – at the Mariott hotel, Mucurapo. The theme for this year’s celebration is Visibility.

“Speak out, people need to know. Make yourself visible, if you push hard, you will realize that a door will open,” said Weekes. The President told the gathering that many of the pains described by the foundation’s founder Dr Daphne Phillips, prior to her speech, was news to her.

Phillips, who has MS, said those with MS live a life of silent suffering. She said having MS is likened unto someone walking with concrete blocks tied to their feet making walking difficult as there is an imbalance. “It is like wearing gloves that inhibits the patients from using their hands as well as they would like to ,” she said, adding that she had to relearn to write with her left hand after MS affected the right side of her body.

Phillips said MS for some patients is like wearing a coat with pins, nails and needles facing inwards causing pain to the person of different degrees. These, she said, are some of the things people don’t know about what those with MS go through.

Phillips said the foundation has been organizing free physiotherapy and massage therapy clinics for members. She said an occupational therapist met with the members to teach them how not to fall and how to rearrange their homes to minimise damage if they do fall. The group also shares information on nutrition and other benefits to its members.

Patricia Jaggassar-Clement, the foundation’s secretary, said there is no government policy to deal with MS, like what exists for other diseases.

Approximately 200 citizens have MS, according to the Health Ministry. MS is an inflammatory demyelinating disease of the central nervous system, characterised by ongoing disease activity, with profound effects on patient independence and quality of life. Fatigue, pain, mobility impairment, muscle weakness, memory loss, respiratory problems and seizures are just some of the many symptoms patients experience. Treating MS is ultimately about managing the symptoms as no two patients are the same, making it even more difficult.