Antidote anecdotes: A conversation with an MS care partner
MS is a chronic disease that is estimated to impact over a million Americans. The condition causes damage to the body’s central nervous system, leading to numbness, memory problems, sight issues, and difficulties with coordination.
Every March is designated as Multiple Sclerosis Awareness Month, designed to provide the MS community with more resources, support, and education as they navigate the impact of the disease. For this MS Awareness Month, we’re featuring an interview with Ronda Rajewski. Not only is Ronda one of Antidote’s Project Managers, but she is also a care partner to a person with multiple sclerosis.
After breaking his neck in 1987, her husband and retired Stationary Engineer Chuck Rajewski began feeling persistent numbness around his body. After undergoing many tests, Chuck eventually received a diagnosis of multiple sclerosis (MS). Today, we’re sharing our conversation with Ronda about this experience — read on to learn more.
An interview with a multiple sclerosis care partner
How did you learn of Chuck’s MS diagnosis?
Chuck’s diagnosis was kind of interesting. After breaking his neck in 1987, he decided to forgo neck surgery, but he started to experience numbness more and more each day. We decided to look into this. Chuck went in for an MRI, and the doctors said that something else was going on, not connected to his prior neck injury. The MRIs showed 5 lesions. The doctors said that it could be cancer, some sort of infection, or MS. They did a spinal tap and other tests and concluded that he had MS. The staff basically told me, “Okay, there’s this medication and that medication…move forward with your life. You most likely won’t die from this.” So, at that point, I was thankful it wasn’t cancer.
I didn’t know much about MS, and at the time of his diagnosis, he was having issues with numbness and double vision. He was given some steroids to calm down flares. Sometimes, nobody could really tell he had MS — it was put on the back burner in a way. However, six years after he stopped taking Avonex (a once-a-week shot to keep the MS from flaring) we started having some tough times. Chuck went in for another MRI, and he had 12 new lesions. In a little more than 6 years, he went from 5 lesions to 17 lesions. After the new lesions, he went on a treatment that involved everyday shots. We sought out a specialist in San Francisco. He saw her and she put him on an infusion every 6 months. He didn’t develop new lesions, but his cognitive issues got worse.
What kinds of support for MS have you found, online or in-person?
It's important to find support groups and connect with other people, whether you have MS or you’re a caregiver. Finding support started out a bit rocky for us, though. Most of the people in the first support group we attended were women, which wasn’t very helpful to him. I’ve been encouraged to meet with other people one-on-one to share stories, journeys, and different ideas. I’ve found groups on Facebook and through the MS Society. Recently, Chuck found a group with a couple of men in it.
There are digital support groups, but my husband is technologically challenged, so that makes things a bit challenging! The MSAA and MS Society make resources available online. We learned about a stem cell treatment through a Facebook group that has about 10,000 members worldwide. Social media has, for the most part, played a positive role in the MS community. However, one of the more difficult things about social media and meetings in general is that they can sometimes be depressing. Chuck, for example, didn’t want to see people in wheelchairs, because he could see his future.
Have you two ever participated in clinical trials?
Interestingly enough, through all this, I did all the research for us and reached out to sites, doctors, etc. Two years ago, I found a 12-week, 3-visit clinical trial for cognitive issues at the University of California at San Francisco. He participated in this. Clinical trials are a big commitment, though. Between the 3-hour drive each way and the appointment, it was a very long day. We both participated in a gut bacteria trial where we did some tests at UCSF and also had physical and cognitive exams. Neither of these were drug trials. The most important factor for us is to be a part of the research and get the benefits out of it. And you have to be proactive — if I didn’t hear from site coordinators, I called.
Recently, Chuck became interested in stem cell treatment for his MS. I learned about this directly from monitoring the comments section on an Antidote Facebook ad for an MS trial. I hadn’t seen it advertised otherwise. In the US, you can only get this done if you’re in a clinical trial, but he wasn’t eligible for any of them. I learned you can get this same treatment in Mexico, India, and Russia without a clinical trial, so I jumped on board after reading other people’s stories, which had a huge impact on me.
His treatment was in June 2020 in Mexico at Clinica Ruiz, the largest patient volume autoimmune disease hematopoietic stem cell transplant (HSCT) private treatment center in the world. Doctor Ruiz Argüelles and Doctor Gómez-Almaguer have performed more than 3,000 HSCT procedures during more than 20 years for hematological and autoimmune diseases, out of which over 1500 have been for MS. Their transplant-related mortality is less than 0.26%, so its among the safest treatment records in the world, and positive results have been achieved in over 78% of patients (which includes individuals with both relapsing and progressive MS). To this date, Chuck has not had any more lesions, and though they report that the treatment doesn’t reverse symptoms, he has experienced some relief, especially the numbness he had in his legs and hands.
What do you want other caregivers or loved ones of newly diagnosed people with MS to know?
I didn't know anything at first. In the beginning, we were expecting physical change. Chuck does walk a bit differently. He has heat intolerance (when it’s more than 80 degrees, he basically turns into a noodle). When there’s a tiny change in temperature toward the cold spectrum, he’s shaking and freezing. It has affected us more and more in cognitive ways, though. He talks about having brain fog a lot and also not being able to stay on task or find words he wants to say. His short-term memory has also been affected, which in turn affects his relationships with others. I want people to be aware of this at the beginning.
Also, when people hear and see clinical trials, they think of the potential risks. However, when Chuck reads about trials, he sees them in a positive light. To him, they’re opportunities to further research and get treatment, and that’s inspiring to me.
