Taking aim at multiple sclerosis
Symptoms of multiple sclerosis can vary widely, but may include:
•Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or the legs and trunk.
•Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
•Prolonged double vision
•Tingling or pain in parts of your body
•Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte’s sign)
•Tremor, lack of co-ordination or unsteady gait
•Problems with bowel and bladder function
Ellen Hollis readily admits she is not the best archer in the world. The 45-year-old hits the bull’s-eye maybe once in 50 tries.
“But when I do, I get a swing in my step and a smile on my face,” Ms Hollis said.
She plays once a month, with David Semos who runs a number of archery classes around the island.
For her, it is not about a score, it is about having fun and one-upping multiple sclerosis, an autoimmune disease that struck her eight years ago.
“I started playing six months after I was diagnosed,” she said. “I wanted to prove to myself that I could still do things.”
The potentially debilitating disease that randomly attacks nerves in the brain and spinal cord, left her with a limp and with damaged vision.
“I can still read, and I can still drive,” she said. “But my vision is pixelated, particularly in low light. And it can’t be repaired with glasses because the nerves are damaged.”
When she first started experiencing MS symptoms in 2009, she did not think much about it.
“I lost feeling in a postage stamp-size area on my upper right arm,” she said. “I played with it, and got a bruise there but couldn’t feel it. Then the right side of my face a month later went numb, ear to mouth. I could feel hot and cold, but there was something not right about it.”
She lost her sense of balance and started listing to one side, then started experiencing terrible headaches over one of her eyes.
“At first you want to pretend that nothing is wrong,” she said. “But when I lost my balance, I knew I had to see a doctor.”
An MRI revealed lesions in her brain. “But I only had a few,” Ms Hollis said. “Typically, by the time new patients see a doctor they have many.”
Because her symptoms seemed mild, doctors were not entirely convinced she had MS. The diagnosis was finally confirmed by a spinal tap.
“When I found out I had MS I was so relieved I cried,” she said. “After using WebMD on the internet, I was sure I had a brain tumour. Different types of cancer run in my family. I read about MS but didn’t think that could be it because I had no family history of it.”
The hardest part of her diagnosis was telling her father, Thaddeus Hollis.
“He lives overseas,” she said. “When he came back to Bermuda, I said ‘Dad I have to tell you something. You don’t have to panic, it is fine. You just need to know this is something I am going through’.
“My stepmother, Wendy, had a friend with MS. Wendy was a complete star, and was able to reassure my father. Now I get e-mails from them every now and again, saying, hey did you see there is new research on MS? It helps that my father and I both like to research.”
She went on a medication called Avonex, in 2010.
“It worked for three years,” she said. “One day I was doing archery and I went to step over something and suddenly realised I was having trouble lifting my leg. I thought, that’s odd.”
A few weeks later, the tip of her nose and tongue went numb. Then she started losing feeling in the left side of her face. It was then that she realised that her medication had stopped working, as it sometimes does.
“The problem with this medication is that it works great, until it doesn’t,” Ms Hollis said.
She saw a specialist in the United States who put her on different medication, Tecfidera, that so far seems to be working.
“It’s a new medication though,” she said. “It was patented only four years ago, so no one knows if this too will stop working.”
Her flare-up impacted her entire left side, leaving her with a weakened arm that made archery more challenging.
She gave it up.
“I lost confidence,” she said. “Nerves can heal, but very slowly and there may be lasting damage.”
A few months ago she decided it was time to get back to archery.
Starting over, was not easy.
“It was very frustrating,” she said. “I’m a beginner all over again. I had to get a lighter bow. But I’m back at it.”
She is determined not to let the disease beat her.
“Persistence is a common theme with people with MS,” she said.
Throughout her journey she has continued to work as local studies librarian at the Bermuda National Library.
“I’m stubborn,” she said. “I can still walk. I can still read and I can still talk with clients. Sometimes focusing on work was what got me through. I sometimes feel guilty that I was lucky enough to have my MS caught early,” she said.
The disease can leave some people with severe mobility issues, but not always.
“When I tell people I have MS they often say ‘but you don’t look sick’,” Ms Hollis said. “I just cringe and smile and try to explain. You don’t see what I have that is wrong with me.”
She said early awareness commercials about the disease showed people with body parts wrapped in chains, encouraging the idea that all people with the disease are left severely debilitated.
“The newer commercials are better,” she said. “One shows a woman with MS playing with her children.”
For support, she joined the Multiple Sclerosis Society of Bermuda in 2013.
“I waited a bit to join because I did not feel like I had anything to share, and was trying to do everything on my own,” she said. “I finally joined after a few years of being ‘independent’ because I found I needed to talk with people who knew what I meant when I described how I was feeling.”
Last month, she was elected president of the organisation, replacing Carolyn Armstrong.
“The society exists as a support group and education platform,” Ms Hollis said. “We educate ourselves and also caregivers. We have around 30 members. Some of them are supporters rather than patients. I know there are more people in the community with MS who are not part of the group. If they feel they don’t need us right now, that’s fine. But if they change their mind, we’re here for them.”
The group kicks off MS Awareness Month this week. Yesterday, they showed the movie The Ride at the National Library on Queen Street. The film documents The Amazing Race host Phil Keoghan’s epic bike ride across the United States to raise money for MS.
“This is the second time we’ve shown this film,” Ms Hollis said. “The first time we showed it in 2012, Phil came to Bermuda for the showing, and donated funds to the society.
“We thought we would do it again. There are people who have not seen it. It is very inspiring for anyone, not just people with MS.”
They will also be hosting a swimathon at the Bermuda National Sports Centre in Devonshire on Saturday from 10am to 2pm.
“I am not a swimming laps person,” Ms Hollis laughed. “I am more into walking, but I will be getting some of my friends to swim laps for me. For me the water is too cold. Cold and heat can trigger MS symptoms.”
Funds raised from the swimathon will go to MS community education programmes and also to members’ medical costs.
“I don’t know what other people with MS pay for medications,” said Ms Hollis. “I pay a $2,200 copay every three months. That’s a lot of money.”
The group meets the first Monday of the month at the Christ Church West Hall in Warwick at 6.30pm.
• For more information, visitmssociety.bm, e-mail email@example.com or call 299-0028 or 295-2905