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Learning to live with MS

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Positive outlook: Angela Cotterill, the co vice-president of the Multiple Sclerosis Society of Bermuda (Photograph by Akil Simmons)

First came the chronic exhaustion, then her right thigh started feeling numb. Doctors thought she might have pinched a nerve but Angela Cotterill was certain it was something more.

“I knew that something was up,” she said.

A year later, as the communications manager walked through the offices at HSBC, a friend pointed out that she was wobbling. Her entire right side, particularly her ankle, was weak.

Doctors had suspected multiple sclerosis but ruled it out because she did not have any lesions on her brain — something often the case with the disease.

“There were lots of doctor visits,” said Ms Cotterill, who went through six years of tests before her MS was confirmed.

“They were ruling out amyotrophic lateral sclerosis, Parkinson’s and other auto- immune diseases. And there are a lot of tests you have to undergo before they can definitely say you have MS. It is different in everyone.”

A spinal tap gave the answer they sought. MS, an unpredictable, often disabling disease, disrupts the flow of information within the brain and between the brain and body.

“When I was diagnosed I actually felt relief,” the 59-year-old said.

“I knew MS was not a death sentence, but it is something that means your life is going to change. You have to adjust to it.”

To avoid injury, she also had to trade in her beloved high heels for others closer to the ground.

“That was one of those things I found really difficult to come to terms with,” she said.

The devastating news came several months later. Doctors found she had primary progressive MS, a rarer form of the disease in which conditions slowly deteriorate with no cycle of relapse and remission.

“I started thinking, ‘I don’t want this thing to beat me. I am going to fight it as long as I can to not get into a wheelchair’,” said Ms Cotterill, who reluctantly traded her cane for a walker 18 months ago.

Ultimately, she found it gave her more freedom. The walker has a seat she can use whenever she is tired.

“I actually get more exercise with it,” she said. “And I found one in my favourite colour, blue.”

The cause of her MS is unknown. It does not run in her family, as far as she knows.

“I was really scared when I had to tell my job that I had MS, but my colleagues here have been incredible,” she said.

She has also received a lot of emotional support from her boyfriend, Jon Beard, and her mother, Wilhelmina Tolman, who lives in Dundee, Scotland.

“Sometimes it is overwhelming. I have a business trip coming up in London.

“Over there they have been doing whatever they can to make sure that when I get there I can be included. Anyone who has any kind of disability at HSBC has all the support so they can be their best at work.”

The Multiple Sclerosis Society of Bermuda also holds a special place in her heart; she is now the co vice-president.

“It is a great network of people,” she said. “We have probably about 30 members, which is quite small considering I know a lot of other people here with MS who haven’t joined.”

The MS Society gives people a chance to exchange information, offer emotional support and sometimes, just share a laugh. It also helps with members’ medical bills, which can often be quite high. They also help with the cost of home care and equipment.

Next month, Ms Cotterill will start taking a new drug, Ocrevus.

So far it is the only one that targets primary progressive MS and there are hopes that it can slow down or stop progression of the disease.

“That will involve having infusions in Boston every six months,” she said. “Up until this point I have been taking one drug which helps improve walking speed for some people with MS, but it doesn’t treat the underlying disease, only the symptoms.

“I also take supplements including those which increase vitamin D levels — which is so important.

“Low vitamin D levels have been found in many people with autoimmune diseases and although we live in sunny Bermuda, a lot of people here actually have low vitamin D levels if they spend too much time inside or are not getting it from their diet.”

The MS Society meets at 6.30pm on the first Monday of every month in the hall at Christ Church, Warwick. Visit mssociety.bm

Angela Cotterill co vice president of the MS Society of Bermuda (Photograph by Akil Simmons)
Family support: Angela Cotterill and her mother, Wilhelmina Tolman