Multiple Sclerosis Society of Canada


The Ripple Effect: MS as a family disease

"We did everything we could as a family to get answers. My mom’s MS progressed quickly. Not only was walking difficult, but a whole suite of new symptoms appeared. I was terrified."

Written by guest contributor, Cheryl Hickey, host, Entertainment Tonight

I feel like I don’t have the right to be mad but I am pissed.

I just got off the phone with my mom, who finished the call with, “Night, night. See you in the morning, surely will. Dubbers, dubbers, k, k.” It may sound odd to the outside world, but we’ve been saying this to each other since I could talk. They are words that calm us both. But tonight our call was about her pain and frustration.

It’s been almost four weeks since she lost most of the feeling in her left leg. The bottom half of her core is numb, and the pain is moving into her right leg. This agonizing pain owns her every movement. We’ve been waiting for an MRI for months, and we’re not sure when we’ll get one.

My mom doesn’t have a family doctor; she can’t secure one where she lives. When she’s examined at a family teaching unit, it’s by a dozen resident doctors. They’ve just diagnosed her with a back issue. In their words, “It’s not an emergency, so just hold on.”

My mom is — was — the most energetic, goofy, fun-loving lady you’d ever meet. She would jump in the lake at night, just because she could. On cold, snowy evenings in Owen Sound, ON, she would dress up in a full one-piece snowsuit and dance. Name any sport, summer or winter, and she was fully participating alongside us. And on long road trips, nothing broke up the silence like her car dance moves, which still make me smile when I remember them.

Lori and Cheryl Hickey before Lori's diagnosis of MS.In her early 40s, my mom started getting a lot of headaches. She had dental work because it was thought to be needed when it wasn’t. Medication after medication was prescribed for the headaches. The other symptoms — the back pain, the throbbing jaw — were thought to be just in her head. The dentist pulled teeth to try to fix the problem. Surprise, surprise — the pain remained, but the teeth didn’t.

Being young at the time, I didn’t think much of it — but knowing what I know now, she was amazing at hiding the really bad days. She eventually gave up trying to get answers about the cause of the strange tingling, unsteady walking and slippery hands. That is, until my wedding shower in August 2008.

It was the most amazing day. My mom, sister and friends had planned an incredible shower. The day went off without a hitch, until the drive home. My mom said her baby toe was numb and in pain. During the 60-minute drive, the pain worsened and travelled up her leg. My family’s life changed in an instant.

Born in Shallow Lake, ON, Cheryl Hickey graduated from London’s Fanshawe College with a broadcast journalism degree and has been the host of Entertainment Tonight Canada since the show premiered in 2005. Cheryl is married with two children, Jaxson and Nyla.

Read the whole story in the Fall/Winter 2014 edition of MS Canada.

Early diagnosis of multiple sclerosis is vital to ensuring Canadian families aren’t left in the dark about the often confusing symptoms of MS.

In 2013, the MS Society of Canada approved funding for 18 studies focused on uncovering answers about the first signs of MS, risk factors for developing MS and the role of genetics in MS.