We recently asked sisters Danielle (27) and Jeanette (23) about their experience growing up with their father, Doug, who was diagnosed with multiple sclerosis 15 years ago. Their devotion and love for their father is unmistakable as they light up with each question, laughing with one another and reminiscing about the good times they’ve shared as a family. Jeanette called us from their family home in Scarborough, ON, where she and Danielle live with Doug and their mother, Teresa. Danielle was able to join the call from the GO train on her way out of the city from work. Here’s what they shared with us.
How old were you when your father was diagnosed with MS?
Danielle: I was 12 when he was diagnosed.
Jeanette: So that would have made me eight.
What words come to mind when you think of your dad?
Danielle: Bicycles, because he’s always on his bike. [Doug has been an avid cyclist in the Toronto MS Bike for years, and we thank him for that!] And sarcasm – we go back and forth with sarcastic remarks all the time. Our house is always so full of laughs. We always joke that there should be a camera set up in our house because there’s never a dull moment – it really helps that we all have the same personality.
Jeanette: He’s very determined, but since he’s been diagnosed he’s become a bit stubborn – it must be the Leo in him. He’s also strong. He hasn’t stopped doing the things he loves doing since he’s been diagnosed. Even when we tell him to take it easy or ease up a bit, he’ll still do it but at his own pace.
Do you remember the day your father told you he had MS? How did you feel?
Danielle: My sister and I have a really close relationship, so we’ll have sleepovers in the same room at home even though we have our own rooms. We were having one of our sleepovers, and at about 11:00 am we heard Mom and Dad on the couch. Mom started to sniffle. We knew something was up so we went downstairs. They sat us down and told us. Being so young at the time, we didn’t understand. It was hard because he looked fine.
Jeanette: Yeah, that’s exactly how we both remember it. It was a weird and confusing morning – just hearing him say that he was diagnosed with something. I remember looking at him and thinking, You’re fine dad, you look fine and there’s nothing wrong. I think I asked him and my mom every day for the next two weeks about what MS was. I really didn’t get it, usually when someone has a disease or is sick with the flu you can see it, but there were no physical signs.
Danielle: For me it was like, how bad does this disease get? What should we expect? We basically looked at the worst-case scenario and then worked backwards to see where we were starting.
How has his diagnosis affected your life the most?
Danielle: We do a lot of things differently now. We don’t go on long outings, so we don’t do anything super active anymore. Our home life is basically the same, but my father’s at home now as he couldn’t continue working because of his MS. If we go out we need to think about how long we’ll be gone for, how hot it is outside, and how long we’ll be on our feet for.
Jeanette: There are extra things we have to do to help out around the house like cutting the grass and shovelling the snow. We try to make it fun, so if we’re out shovelling we’ll come in and all have hot chocolate together. Most of our friends don’t have these responsibilities and are surprised by this. We also make an effort to come home early from our friends’ houses, but that’s not necessarily a choice we wouldn’t have made if our dad didn’t have MS – our family comes first, it’s just the way we were raised.
Danielle: Oh, and we put the holiday lights up on the house. Standing on the roof is terrifying! I don’t know how my dad did it year after year.
Jeanette: Yeah, and don’t forget about cutting the ivy in the backyard! When you’re up there with the mower in one hand and you’re holding the ladder with the other, it’s quite the sight!
Danielle: Come to think of it, we should probably set up a landscaping company!
What things do you enjoy doing most with your father? Has his MS made it harder for you to do those things with him?
Danielle: Dad and I used to rollerblade all the time, but now cycling is easier for him and I don’t cycle so I miss that time with him. Cycling is something he’s really into as he finds it easier than walking. He’s already training for this year’s MS Bike!
Jeanette: We play cards all the time, but it’s different now because his hands are in pain and shake due to his MS. We need to be patient when we play and give him extra time. We play a game called Shanghai, break out five decks of cards and invite the extended family over.
How do you help support your dad in managing his MS?
Danielle: For us, it’s reminding him to take it easy and not to overdo things. We’ll catch him outside sometimes trying to cut the grass, and we’ll have to remind him that we’re here to do that and it can wait.
Jeanette: Treating him like nothing’s changed is also a big part of it. We have one rule in our house – if someone stumbles, falls, or hits their elbow on something, you don’t ask if they’re ok. It’s kind of funny, of course, as long as it’s nothing serious. Pity doesn’t go over well in our house!
Danielle: Yeah – we believe in a “buck up” mentality – there’s no, “Oh no, are you okay.” It’s mostly Jeanette and I calling for help, to be honest!
What would a cure mean for MS mean to you?
Danielle: A cure would mean that my dad would be able to do the things he enjoys in a greater capacity. He would be less tired and wouldn’t have to worry about the constant pain and numbness he experiences.
Jeanette: To see him sleep more and not be up at all hours would be a relief. We’ve had a couple nights where we’re up until 3:00am worrying about what will come next. If it’s the week before his infusion, he’ll have trouble getting to sleep. The drugs in his system wear off a bit before he gets his new dose, so it’s the in-between stages that are the hardest – he can feel more pain and doesn’t sleep well.
What are you planning on doing this Sunday for Father’s Day?
Danielle: We usually have a nice dinner – he picks the food or the restaurant. But this year we’re going to go to his parents’ house and have dinner with them.
Jeanette: He usually tries to do the “no presents” thing, but we’ve kept our ears open and have a couple things in mind. I’m usually the card barer and pick the funniest one I can find – there are no sad, mushy or cheesy cards allowed!
Like Doug, you can choose to be on Team Fight by registering for MS Bike – you’ll be impacting the life of Canadians affected by MS.
Not only will you add an epic adventure to your summer schedule, but your fundraising will support world-leading MS research happening right here in Canada.