When Justine Lakeit first noticed a little numbness in her hands and fingers, she didn’t think much of it.
As it became more noticeable, and spread to her torso and legs, it became enough of a concern to make an appointment to see her doctor.
She didn’t for a minute expect the life-changing diagnosis she received.
Lakeit, the mother of two sons, Archer, now nine years old, and Parker, almost 11, discovered about a year ago the numbness was caused by multiple sclerosis, a disease for which there is no cure.
“It wasn’t what I was expecting to hear,” she says. “It was definitely a shock.”
She received her diagnosis after an MRI at the Hamilton General Hospital’s MS clinic. Everyone she met, she says, “was so kind, they helped make it not so scary. They described it as something manageable, and they made me feel I’d be okay. They were so honest, and so genuinely kind.”
She was put on a relatively new treatment of medication aimed at slowing the disease and controlling the symptoms, but not eliminating them.
Since then, she’s done her research and learned more about MS than she ever expected to, including how prevalent it is.
It’s a progressive disease that effects people differently. Hers is relapsing-remitting, which describes a pattern of symptoms which alternates between relapses and being in remission.
Technically, says Lakeit, she’s considered in remission, but she still has symptoms.
As both the front of house manager and events coordinator at Caroline Cellars, the Lakeit family winery, she says her hands don’t always work properly, her fine motor skills “are not great,” and she can tire easily.
Looking back, she realizes fatigue was the first symptom, although she didn’t know it at the time.
“I was just so tired all the time,” she says, but there was a lot going on for the busy mother who was raising a family and working full-time at the winery. “I never thought about it being part of something bigger.”
She understands now she had likely been having symptoms for many years. Once the disease was explained to her, “they all came together as part of the diagnosis. I can never be sure, but I remember thinking, ‘now everything makes sense.’”
Lakeit explains the disease is caused by lesions on the spinal cord and brain. Multiple sclerosis is an inflammatory disease that attacks the autoimmune system, damaging nerve coatings.
Those lesions are evident on MRIs, she says. Her last one was a year ago, and she was scheduled for another in March, to see if the disease had progressed. The pandemic cancelled that appointment, and she now has to wait until September.
“I don’t feel like it’s progressed,” she says, “but the treatment can’t change the existing damage, and I still have symptoms. Heat can bring them on, causing more numbness and fatigue. Self-care can be a huge part of the diagnosis and living with the disease. Lifestyle changes can make a difference.”
Resting and scaling back on activities can be challenging, she says, but she has learned that she sometimes has to “take a breather, especially when it’s hot. I’m conscious of having to pace myself.”
Some days, if she does too much, “I burn out. But it’s unpredictable. I can have a busy day, and be fine, and other days, I’m knocked off my feet.”
It’s the unpredictability of the disease that is hardest, she adds, with its wide range of symptoms, never knowing when they will return, how serious they will be, how she will be affected or what the future holds for her.
“I could live a really normal life for a long time, or things could change very quickly.”
At 38, she says when she first heard the diagnosis she thought she was too young for MS, but learned it is often diagnosed between the ages of 20 to 40.
She has also learned the treatment has come a long way in recent decades. The medication she takes came on the market in 2012, and studies are working toward both a cure and a better quality of life for MS sufferers.
She has come to realize how important both research and awareness are in solving some of the mysteries of MS, and hopefully finding a cure, for her and others.
A decision that she wanted to do something to help led her to put two oranges together — an orange wine that is new for Caroline Cellars, and the orange that is the symbol of MS.
Orange wine is a broad term for skin-fermented white wine, Lakeit explains. When the grape skins are not removed, and are in contact with the juice for an extended period of time, the wine takes on an orangish hue.
Caroline Cellars made its first orange wine, a VQA Skin-fermented Vidal, in 2019.
“My diagnosis and the orange wine had nothing to do with each other at the time. But everything kind of fell into place, and it seemed like an opportunity for me to do something for the MS Society. They were really excited to work with us. It’s been a partnership, and easy to get it going.”
Of the 2,000 bottles made last year, Caroline Cellars is donating $2.50 for each bottle, Lakeit says.
While it’s not a huge amount of money, she adds, “our plan is to do it again next year. Orange wine is a bit trendy at the moment, and we had hoped to have a big event, a fundraising launch for it, but that didn’t happen. It’s definitely something we want to do in the future. And the MS Society is being really flexible. If there’s an opportunity to do something in the fall, we’ll put it together.”
Her commitment to raising funds, and furthering awareness, “is long-term. It’s not going anywhere. Awareness of how it affects people differently, and how it affects day-to-day lives, is important. While we may see and notice the impact on some who suffer from the progressive disease,” she says, “there are a lot of people who struggle with it, and it’s not visible. Just because you don’t see it, doesn’t mean we’re not struggling.”