Multiple Sclerosis and our uncertain futures

“I’m very scared.”

For the first time in our interview, Vicki Jenczmionka is in tears. Up to that point, she has been pragmatic, even upbeat at times, when discussing the impact multiple sclerosis (MS) is having on her life. Vicki is a strong-willed individual with an attitude that says she won’t let MS beat her. But when I ask her about her future, her tone changes.

“You know, I’m very scared. My mom just turned 80. She looks much younger, probably 60. And she’s in perfect health, goes for three-mile walks every day and lives her life like she was 40. I had always thought I would be like that. But I won’t.”

Vicki was 48 when she was diagnosed with MS in late 2018. “At the time I was still feeling good. I was running 5Ks, exercising four times a week and had no signs that anything was wrong. I thought I’m gonna be OK. The MS is not going to be a big deal because I’m healthy and active.

“But it slowly took a hold of me. At the start of the COVID pandemic I was still running, taking my dog out and everything was good. And then the pain set in.”

Vicki feels pain down her right arm, which makes writing almost impossible. But the most severe pain is down Vicki’s right leg – a continuous pain that is combined with a numbness. “The pain goes from a three to an eight out of 10. So sometimes it hurts less, but there’s always some pain and it can hurt to the point where I can’t walk.”

Due to the pain, Vicki can no longer exercise, and she struggles to walk. At Zurich North America she now works full-time from home – yet still successfully manages a six-strong team, including two people managers. And once the last of her four children leaves home, she plans to downsize to a smaller single-story home so she can avoid the need to climb stairs.

But Vicki’s lowest point came in January 2022 during a family trip to Universal Studios in Florida, when she needed a wheelchair to get around the theme park. It’s this rapid deterioration in her mobility that makes Vicki fear for her future.

“It’s really hard because I don’t know what is going to happen. I’m scared I’m going to be in a wheelchair all the time. I don’t want to end up like that and for my kids to have to deal with it.”

What is multiple sclerosis?

MS is a lifelong autoimmune condition that can affect the brain and spinal cord. It causes the immune system to mistakenly attack the protective layer surrounding the nerves called the myelin sheath. This causes scarring – or lesions – that can damage the underlying nerves. This damage to the central nervous system – made up of the brain, spinal cord and optic nerves – can trigger a wide range of potential symptoms.

Vicki has 20 lesions in her brain and another 20 to 30 on her spine. Although she is now on medication to stop the further spread of lesions, the existing ones cannot be removed, and they regularly cause symptoms.

The symptoms of MS may differ greatly from person to person and over the course of the disease, depending on the location of affected nerves and the amount of damage. Typically, symptoms include fatigue, difficulty walking, vision problems, bladder issues, muscle stiffness and spasms, numbness or tingling in the body and problems with balance and co-ordination. Some people with severe MS may lose the ability to walk independently – MS is one of the most common causes of disability in younger adults. Others may experience long periods of remission without any new symptoms depending on their type of MS (see box at end of article).

Attempting to outrun MS

Like Vicki, Grace Buckley also remains positive despite being diagnosed with MS five years ago. But the future of her condition is also unclear. Grace’s first sign of MS was in 2015 while she was living in Ireland. She noticed her vision in her right eye was blurry and so visited an ophthalmologist. “He told me I had optic neuritis, which is when your optic nerve is inflamed. And he very casually added, ‘Oh, and it’s sometimes associated with MS, but I wouldn’t worry.’ A few weeks later, my vision came back, and I didn’t think about it anymore.”

Grace didn’t get diagnosed for another two years. At this point she had relocated to Chicago to join Zurich North America, but the blurry vision returned – this time in her other eye. Grace had an MRI scan and was diagnosed with MS in May 2017, when she was 29 and training for her first Ironman triathlon.

“I stopped training for a couple of weeks, but then suddenly became more determined to finish the race. It gave me the belief that if I can complete an Ironman then I can overcome MS,” Grace says. This positive thinking and her focus on exercise (she has now completed three full Ironman triathlons and 12 marathons) has helped her maintain a healthy attitude.

“I’m very methodical and logical about things,” Grace says. “I’ve had MS for five years – potentially seven if I go back to 2015 – and I’ve been fine. The symptoms have not gotten worse, and I don’t have more lesions. I just try to outrun MS. I feel if I can just keep fit, then it won’t catch up with me.”

Grace’s lesions are on her brain – with just one on her spine – and from time to time they impact her optic nerve and cause blurry vision. To date, it has not caused too many problems, and sometimes Grace is unsure if the blurry vision she may experience is a result of the MS or from staring at a computer screen all day. The same is true of fatigue. Grace is never sure if she’s feeling exhausted because she did a 100-mile cycle, or if it’s due to the MS as fatigue is a common symptom.

The lack of severe symptoms and new lesions means Grace has decided to avoid taking MS medication, in part because she’s concerned about potential physical side effects. But she also worries that if she took daily medication – the treatment she was initially recommended would require her to take daily injections – it would remind her that she has MS and have an adverse impact on her mental health.

“It’s hard to figure out if I’m being naive or smart about not taking MS medication. One year, sadly, I may have an MRI scan and there will be new lesions. And I’ll go, ‘Crap, maybe I should have taken medication.’ But I don’t know. And that’s what drives me nuts.”

Fear of the wheelchair

Grace is concerned she could find more lesions on her spine that cause mobility issues. “That worries me,” she admits. “I am very physically active so the thought of not being able to run or move terrifies me. I couldn’t imagine life in a wheelchair. I just couldn’t.”

Vicki understands that fear well. She describes the thought of using a wheelchair at Universal Studios as a “horrible” experience – and her most difficult moment since her diagnosis. “I remember talking to my mom, and I was like, ‘This is ridiculous. I shouldn’t have to do this. I’ll be OK, and I’ll sit down if I get sore.’”

But a reality check from Vicki’s mother helped her get through the day. “My mom told me to ‘get over it’ otherwise I was going to miss time with my family, which is more important than my embarrassment at being in a wheelchair. And she was right, of course.

“That was a big hurdle for me mentally,” Vicki continues. “But I got through it and had fun. It wasn’t as big a deal as I had thought it was. So that was a good lesson.” Memories of her father also help her cope with the stress of MS. He suffered with ankylosing spondylitis and was disabled throughout Vicki’s life – including breaking his back on four occasions. “He told me, ‘You gotta laugh. It keeps you sane.’ And he’s right.”

The mental stress of having MS can be just as difficult as any potential physical symptoms. Grace admits she often feels dejected when she sees a story about a celebrity with MS or if a friend shares an article on the topic, as it reminds her that she has the same condition.

What adds to the stress is that MS remains poorly understood. The cause of MS is unknown. People are not born with MS, but most are diagnosed in their 20s, 30s and 40s and women are up to three times more likely to have MS than men. The reasons are unclear, but a mix of some genetic and environmental factors appear to be responsible. All this uncertainty also means there is still no cure.

“I don’t have a lot of hope they’re going to find a cure,” Vicki says. “But I hope they can find some way to help my pain and to keep me walking. I just hope I can stay out of a wheelchair, and I can keep working.”

For both Vicki and Grace, the outlook is vague. Neither of them likes to dwell on the future. Too much is unknown. But they are both learning to live with this uncertainty with grit and determination.

“I just try and focus on the things that I can control,” Grace says. “I can’t get rid of the scars on my brain. But I can control what I eat, I control my exercise and I can control my attitude.”