Before you read on, make sure to check out Part 1 of Jennifer’s story. In Part 1, we discuss what multiple sclerosis is, its symptoms, treatment options, and Jennifer’s journey from diagnosis to becoming a marathon runner. Today, we’ll discuss her decision to switch to Kesimpta, how she manages her multiple sclerosis, and advice for the newly diagnosed.
In her 30s, Jennifer began experiencing more relapses which required three-day steroid infusions. Scary thoughts swarmed her mind—would she make it to 50 years old and, if so, what would her quality-of-life be? Eventually, she decided to make a change. She switched neurologists, choosing a doctor who was up to date on research and really understood what his patients were going through. When she asked if there was another treatment option so that she could begin feeling better, he switched her over to Kesimpta.
The National Multiple Sclerosis Society explains that Kesimpta is:
a monoclonal antibody that binds to a docking site (CD20) on some immune B cells and depletes them. B cells are among immune cells that have been implicated in causing nervous system damage in MS.
Since beginning Kesimpta, Jennifer has seen great results and really felt like her life has changed. She says:
This was a total game changer for me. When I started treatment, I almost immediately felt better than I had in a long time. Patients have so many more options available and that’s a great testament to the research.
For those looking for a new therapy, or a better therapeutic option, Jennifer encourages them to speak with their doctor openly and honestly and ask about side effects as one treatment might not be right for everyone. She says:
If something isn’t working for you, you need to recognize and be okay with that. It’s okay if it isn’t working because now there are options available. Really taking charge of how you’re feeling and realizing it’s okay to change is crucial.
Currently, there is no cure for MS. However, there are treatment options available, including Kesimpta,and other injectable, oral, or infusion-based therapies.
Managing Multiple Sclerosis (in Marathons & Life)
One of the keys to remaining resilient is finding the best way to manage her condition. For Jennifer, this means having a good diet, being active, getting enough sleep, and remaining positive. She shares:
When you don’t feel good, you don’t want to exercise, and it becomes a cycle. I didn’t start off running marathons. COVID happened and I wanted a way to get out of the house, even if just for a bit, and more positively manage my emotions. So, I started walking the block outside, then I worked up to running a block. Then the next day, I ran a block and a little more. It became these little goals for myself where I could have my own time. I think the most important thing is incorporating as much movement as you feel comfortable with.
Jennifer applied this same mindset to her running and marathon training. Her first goal for her first 5k was just to finish. The next time, it was to not finish last; the next, to be two seconds faster each mile than the mile before. Those little goals added up to big accomplishments.
During marathons, Jennifer also knows that she must keep MS in mind. She explains that this isn’t anything out of the ordinary for others who are training, but something that she just needs to remain attuned to for her own health:
If the marathon is in October, training ramps up around June and it gets hot over the summer. I’m aware of how heat affects me with MS, so I may start super early before the heat ramps up. I also stay keenly aware of my hydration and recognize that not every run is going to be amazing. Sometimes I have to walk that last little bit. I’m going to get there and it might take me a while, and I have to be okay with that.
While participating in the Chicago Marathon, Jennifer spotted someone wearing a shirt that really resonated with her: Just as far, not as fast. This was a reminder that everyone gets the same medal when they cross the finish line; the race is against yourself. In life, this phrase stands as a strong remembrance that we don’t need to compare ourselves to others. Says Jennifer:
If you’re starting out trying to incorporate more movement into your routine, don’t compare yourself to others. You’re not racing them. You are trying to be your best self every day and a little bit better every day.
Advice for the Newly Diagnosed
Throughout her journey, Jennifer has learned so much about life, MS, and more importantly, the strength she holds inside of her.
But for those starting their journeys or are newly diagnosed, it can be a scary time. To help overcome the fears associated with a new diagnosis, Jennifer says:
Don’t be afraid to ask questions. People will answer them, I guarantee you. When I was diagnosed, I was so blindsided that I didn’t know what questions to ask. Don’t go to WebMD. Don’t do research in a vacuum. Go to the support groups or the advocacy organizations. Talk to people who are knowledgeable about MS. Make the choices that you think are best for you from these questions and, if it doesn’t work out, you can always change it.
Caregivers should also make sure to find outlets to relieve pressure, Jennifer says, as it can be stressful to help a loved one while also maintaining self and identity.
Finally, the most important aspect of not just surviving, but thriving, through this diagnosis is having honest and open conversations – not just with others, but with yourself. Understand where you truly are and what needs to change for you to feel better. Is it a change of scenery? A new doctor? A medication change? Jennifer shares:
I went years feeling crappy and thought it was as good as it was going to get, but that wasn’t the case at all. I wasn’t being my best self and that’s because I wasn’t being honest with myself about what I needed.
So if you’re dealing with a new multiple sclerosis diagnosis, or just looking to talk, know that you are not alone. There are always people who are willing to help.