Fighting for quality life
Leanna Clements to receive stem cell treatment in California for her multiple sclerosis
One of Leanna Clements’ goals is to get back on the ball diamond at full strength.
Sitting in the living room of her St. Catharines apartment with her mom and her sister and laughing about things such as once running for Miss Niagara, how she doesn’t like following recipes and having to drive a halfhour to the beer store when they lived in Simcoe, it’s hard to tell that she has multiple sclerosis.
Clements, 44, says she’s been battling the illness for roughly 14 years and has been off work for two.
Originally she was diagnosed with a pinched nerve, but she knew something more was going on when she wasn’t getting any better. She went to a friend of hers who was a doctor.
“Isaidsomethingisgoingon.Iknow they’re telling me I have a pinched nerve, but I quit all my sports,” she says. “I quit baseball, I quit bowling. I quit everything and it was just getting worse and worse.”
She has a box of tissues ready to go beside her and she’s emotional talking about how the disease has affected her. Talking about it isn’t something she often does.
It was at McMaster Hospital in Hamilton that she got her diagnosis.
She passed all the routine neurological tests, but the MRI revealed something more.
“I went back to see the doctor after my MRI and he said, ‘Well, Leanna, they stopped counting at 33 lesions on your brain, your neck and your spine, and you have MS.’”
Despite having worked in the medical field herself, Clements says she really didn’t know what MS was. When she started looking it up, she found out there was a one per cent chance the diagnosis was wrong. She asked for a second test. The second test was a spinal tap, which yielded the same results.
When she started on medication, she says, she chose the treatment that would give her the best chance at a good quality of life. The once-a-week injection seemed promising, but soon turned dark.
“I would take it on a Sunday and within 20 minutes, I was on the floor. It made me deathly ill.”
The injection would leave her out of commission for three days as she fought fevers, vomiting and headaches.
“It just to me was no quality of life.”
Switching to a daily injection weakened her immune system so much that she was constantly fighting infections. Four years ago, she’d had enough. “I was exhausted at taking medications that were no guarantee to me. The only thing they guarantee you is maybe, just maybe they’ll slow down the disease.”
Nurses tried to get her on another medication, but she said no. She decided to stop taking any medication.
She adopted the thought process of living in the now, which she still uses to help her get through her days.
“I’m not focusing on anything but us talking,” she says, keeping eye contact. “I don’t feel the pins and needles, I don’t feel the pain.”
She describes the disease as having robbed her of her ability to walk for six months, saying she had to retrain herself to get back on her feet. She started from crawling and worked her way up.
One of the biggest struggles she’s had with the illness is grappling with the fact that her friends and family might see her differently.
She has kept the diagnosis from many people she knows and even left the area when she couldn’t walk so she didn’t have to deal with questions.
Another struggle is the thought of the toll MS could ultimately have on her.
“When I go to bed at night and I feel a little twitch or a little different pin and needle or a little pain that I haven’t felt before.” Her voice becomes slow and pained. “My biggest fear is going to sleep every day because am I going to wake up again and not walk? Am I not going to be able to swallow? Not be able to do anything?”
She’s sworn off medication, but a new treatment option has opened up to her. Stem cell treatment.
Clements says she’s known about stem cell treatment for a long time, but didn’t know it could be used for MS. For it she’ll have to travel to California. Canada has only done trials.
It’s an expensive venture, approximately $21,000, that she’s been struggling to find money for, but friends and family are helping make sure she gets the help she needs. On Aug. 12, they hosted a fundraiser for her at the Welland’s Royal Canadian Legion Branch 4. Although Clements and her family live in St. Catharines now, Welland is still a big part of her life since it’s where she moved to when she first came to Niagara, where she plays sports and where she has many friends.
Clements says she felt blessed to be surrounded by so many loved ones at the event. All together they raised $4,800 for her.
Her opportunity to go to California is bittersweet, though.
“I don’t want to be better than anybody else. I want to be the same as the average person that’s going through the same thing as me. I want them to be able to have what I have.”
She has vowed that if this treatment works for her, she’s coming back to Canada to fight for everyone else who needs it, too.
“I will get it here. I’ll fight tooth and nail. I want to be able to come back to Canada to help other people. We matter. Our lives matter.”