A former fan of the heat of her hometown of Kamloops, and once a backyard hot tub enthusiast, Robin Burgess is not looking forward to summer.
For years, warm temperatures caused so much weakness in her legs, that her North Delta home now has separate air conditioners for the her bedroom, kitchen and basement.
“I know heat bothered me, but I didn’t know why.”
Prior to her diagnosis with multiple sclerosis in March 2012 at the age of 49, she thought she was just clumsy.
The new diagnosis explained the weakness, and also proved that her other strange symptom, numbness in her left arm, hand and fingers, was not carpal tunnel syndrome.
“Things made sense and I was not just a klutz,” she says, recalling the days she would have trouble carrying a laundry basket or walking up the stairs.
She’s now much more aware of her environment and actions, such as counting the seven steps in each of the two staircases in her home, doing spring and summer chores in the early morning or evening, consuming no aspartame or immunity-boosting cold medicines, and taking the new MS medicine she’s receiving in a double-blind study.
There are good days and not-so-good days, but the medicines seem to be helping, and her UBC medical support team and employers (Burnaby’s D.A. Townley and Associates, where she works full-time) offer her no end of positive support.
She can drive, but can’t take the bus or SkyTrain because the unpredictable vibrations make her lose her balance. (She says in hot weather, her left foot feels like she’s wearing a “big clown shoe”).
Burgess says she’s lucky in the sense that she’s right-handed (MS affects her left hand) and that unlike many women, she was diagnosed and doesn’t have children – just two purring “fur kids” and a supportive husband.
“Better me than a young mom,” Burgess says of the debilitating disease of the nervous system.
She adds one other positive, perhaps life-saving tangent to her story: The MRI scan that confirmed her MS diagnosis also found a lump in her neck that was a tumour that might have been dangerous.
It was removed in a surgical procedure in January.
Warmer weather means T-shirts, and Burgess will don a purple one on April 28 with her six-member Team Bunditos at the Scotiabank MS Walk at Bear Creek Park.
She’s already passed her $500 fundraising goal, and has raised it to $1,500 – all for the MS Society’s efforts to find a cure for MS and provide services for it’s membership of 28,000 people across Canada.
The walk will involve 6,000 people across B.C.
“There’s got to be a reason some of us get it,” says Burgess.
“But we just can’t figure out why.”
The Scotiabank MS Walk takes place April 28 at 10 a.m. at Bear Creek Park, 13750 88 Ave. Check-in time is 8 a.m. (Early check-in can be done April 27 from 10 a.m. to 12:30 p.m. at the Newton Library, 13795 70 Ave.). The three walk loops available are 3K, 5K and 6.5K. Wheelchairs, scooters or strollers are welcome. Teams can be set up by calling 604-602-3220 or emailing firstname.lastname@example.org. For more information and to register for the event, visit http://bit.ly/16tSz6D or www.mswalks.ca
Facts from the MS Society:
• First identified in 1868, MS – a chronic disease that affects the central nervous system – is complex and unpredictable, and can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis. It can also affect hearing.
• MS is most often diagnosed between the ages of 15 and 40.
• Canadians have one of the highest rates of multiple sclerosis in the world.
• Every day, three more people in Canada are diagnosed with MS.
• Women are more than three times as likely to develop MS as men.
• The cause of MS is unknown, but research continues.