Invisible impact: cognitive effects of Multiple Sclerosis
Sheryl Elliston was a young mom with two daughters and a career in home care, when she began to have debilitating fatigue in 1990.
First she felt some numbness in her back when she showered, then her right hand became weaker. Sometimes she would trip.
“I was really exhausted when I got home from work and would lie down to rest before making dinner,” says Sheryl.
Her family physician referred her to a neurologist at London Health Sciences Centre where she was diagnosed with Multiple Sclerosis (MS).
MS is an inflammatory disease in which the body's immune system attacks its own tissues. With MS, the immune system destroys myelin, which is the fatty substance that coats and protects nerve fibers in the brain and spinal cord.
While no two people with MS experience the disease in exactly the same way, common symptoms include fatigue, vision problems, bladder and bowel problems, numbness, tingling, twitching, and pain in certain areas of the body. It is a chronic condition.
“When you think of MS, you think of someone in a wheelchair. But that is not the case. A lot of people didn’t know I had it,’” says Sheryl.
While Sheryl’s symptoms come and go, she experiences vision problems, weakness on the right side of her body especially with writing and walking, and needs a cane at times.
What you don’t see is the cognitive effect MS has on Sheryl.
With a history of dementia in her family, Sheryl was referred to Dr. Sarah Morrow, an MS neurologist at LHSC whose practice has a special focus on cognition in MS, to be tested to see if she had any issues with memory.
Her results showed her memory is fine, but her processing speed, while still within normal range, was a little slow. This pointed to the cognitive effect MS can have on a person.
The recognition of the cognitive effect of MS on the brain is still in its infancy. A definitive research study in 1991 identified a pattern of cognitive impairment in some MS patients that is not dementia.
It is only in the last 10 years that more research has been done on this aspect of MS, and neurologists now believe 50 to 60 per cent of people with MS may be experiencing some cognitive impairment, says Dr. Morrow.
LHSC’s MS cognitive clinic is the first in Canada.
“The cognitive effect of MS is still not well recognized. It isn’t the same as dementia. There is often impairment of information processing speed,” says Dr. Morrow.
The clinic offers cognitive testing to newly diagnosed MS patients to establish a baseline. The results are compared to what is considered the norm in the general populations. If patients experience cognitive changes, they can then be retested and compared to their earlier baseline results.
For Sheryl, follow-up testing five years later showed that her memory was still fine but her processing speed is now in the abnormal range.
“What I find is if there is a lot of noise and background activity I am easily distracted, it really affects my concentration,” says Sheryl.
People with slower processing speed experience difficulty with distraction and multitasking and do better by taking on one task at a time, says Dr. Morrow.
“I don’t go into the express check out because it might take me longer to pay or to use the debit machine. Sometimes it’s embarrassing. People get frustrated or impatient in line behind me, they make comments. While they can’t see that my challenges stem from MS, that doesn’t make it any less real when you experience it.”
There is no approved treatment for the cognitive effects of MS. In fact, researchers have not yet been able to identify what parts of the brain lead to cognitive impairment, says Dr. Morrow.
There are strategies people with cognitive impairment can use to accommodate their slower processing speed, such as writing things down, and communicating through e-mail or text messages instead of the telephone to allow the person to check back on the information.
“I don’t know where I’d be without my husband. If I don’t focus I get so easily distracted and I don’t accomplish what I set out to do,” says Sheryl. “I can get totally sidetracked. It’s very frustrating. He helps to keep me on track every chance he has.”
The hardest part for Sheryl has been the loss of independence and, as she puts it, having things taken away that are out of your control.
“I have lost the ability to do things spontaneously and it affects the whole family. Even when we plan something, I may not be able to do it when the time comes.”
Her advice for others who are newly diagnosed?
“Don’t isolate yourself. If it’s a group setting you enjoy look for a support group. If not, find someone you can talk to one-on-one, someone who has been there.
“Your life hasn’t ended because of MS, but sometimes it sure feels like it. It is ok to ask for help.”
MS is life-altering, says Sheryl.
“I am so grateful for the care at LHSC. The hospital has done so much for me. Dr. Morrow has been so amazing and has helped so much.”