Theoretical background
Multiple sclerosis (MS) is a neurodegenerative disease that, despite its relatively low occurrence worldwide (only 2-3 million people), most of us have heard of. It is three times more common in women than men, and presents often in the early 30’s. MS is characterized by the inflammation and demyelination of nerves in the central nervous system. “Demyelination” is the process through which the lipid (fat-based) sheaths around nerve cell axons, called myelin, are stripped away, leading to detrimental impacts on the function of the affected cells. The disease does not stop there though, as the demyelination and inflammation coincides with the loss of axons in the central nervous system (CNS) nerves and the atrophy of white and grey brain matter over time.
The “over time” is key here because MS presents as one of three subtypes: primary progressive, secondary progressive and relapse. Of these, relapse is the most common, with only ~10-15% of MS patients experiencing progressive subtypes. In relapse, episodes of neurological symptoms appear and recover periodically. This can sometimes advance to secondary progressive, where the symptoms continue to worsen over time, without any remission. Lastly, in the primary subtype, symptoms do not worsen in episodes but immediately begin to progress, at an unpredictable rate.
Irrespective of type, MS symptoms present not only physically, in the form of loss of limb function over time, but also cognitively. The detrimental impacts on the brain over the course of an MS patient’s life are difficult to predict because the neuroplasticity inherent in the brain means that some patients experience significant loss of cognitive processing speed (the speed with which one handles tasks), visual memory (recalling pictures/visual memories) and executive function (such as attention), while others never experience any of this throughout their whole lives.
(for more in depth information about MS, please read this article)
Miriam’s story
In 2020, during the Covid-pandemic, Miriam was working from home when she started noticing something odd: one of her legs was feeling heavy and it became increasingly difficult to walk. These symptoms did not seem to go away, so she decided to visit her GP. The GP suggested that the stiffness was probably caused by prolonged sitting while working from home - something that many of us experienced during lockdown. The explanation seemed logical, and Miriam tried to move more during her workday. However, even though Miriam followed the doctor’s advice, she noticed her mobility getting worse over time instead of better. Despite repeated visits to her GP, she did not find a cause for her problems.
Flash forward to a few years later. Miriam had an appointment with her new GP and again explained her mobility complaints. The new GP deliberated and concluded “I think it would be good for you to see a neurologist”. Miriam was confused at first: “Why would I need to go to a neurologist, someone who treats the brain, if I have problems with my legs?” This soon became clear. After a thorough examination and scans, the neurologist diagnosed Miriam with multiple sclerosis (MS). Although it was a relief to finally know what caused her complaints (almost four years after her first GP visit), the diagnosis also brought about a lot of uncertainty: What will happen in the future? How fast will the deterioration go? How will she deal with all of this? She started treatment, Ocrevus, a medication that is administered via intravenous infusion to help slow the progression of MS. Damage to the nerve signals affects not only mobility but also other functions that we often take for granted, such as bladder control. Miriam received medication for this too, resulting in her needing to go to the bathroom less often.
Recently, Miriam received the news that the treatment with Ocrevus was successful according to the blood-test. Also, the MRI-scans did not show any new lesions in the brain or spinal cord. However, despite these positive results Miriam continuously notices her symptoms getting worse. Therefore, she received the diagnosis of the secondary progressive subtype of MS. She recently went on a trip to Japan, a place she also visited several years ago, during which the worsening of her symptoms clearly showed. A few years ago she would need a break from walking every 10 minutes; now it was every few minutes. Next to that, her pace of walking is slower than it used to be.
Right after the diagnosis, Miriam felt very depressed. She isolated herself from her family and friends and spent most of her time at home. She didn’t care about spending her time productively or eating healthy - she felt it all didn’t matter anymore since she was ill anyways. The thing that scared Miriam the most was the uncertainty of her future: “MS isn’t something you die from right away, it’s something that progresses in unpredictable ways and, in a way, that can be even worse”. At the hospital, she was offered psychological help and counselling, but she didn’t feel like the psychologist really understood her situation. In a rehabilitation centre Miriam found some comfort in talking to other patients with MS who were going through similar things. On the other hand, spending time with them constantly reminded her of how bad it can get, which made her even more distressed: “I don’t want to focus on MS so much or talk about it all the time, it drains my energy.”
Miriam had to turn a lot of things in her life around because of MS. Most involved practicalities and planning: Is there public transport to get from A to B? Are there benches that she could use to rest? Walking on the right side, so others can easily pass. These adjustments didn’t come without feelings of guilt. Miriam had a tough time accepting her new reality and the fact that it affected people around her. She worried about slowing people down, being a burden, or letting others down. It took time to understand that being ill isn’t her fault and that people in her life love her unconditionally. Surrounding herself with people she loves helped her get through the dark times.
Miriam found new hope in neuroscience. She became curious about the workings of the brain and how she can affect it with simple everyday activities. ‘I want my brain to be my best friend, not my enemy’ - that’s Miriam’s mantra. She started implementing gentle routines into her day that help her maintain a healthy and sustainable lifestyle. She eats healthy, goes on daily walks in nature, solves puzzles to stay cognitively engaged, and she prioritises good sleep. She lives day by day and appreciates every little thing that comes her way.
Miriam found her purpose in exploring the human brain and publicly shares her tips and tricks on how to keep it happy and healthy. Through her social media platforms she aims to give hope to others and help them become best friends with their brains too, against all odds.
“Brain awareness is about noticing how your thoughts, emotions and habits are shaped by how your brain works. When you understand this, you gain more choice in how you respond to life - rather than simply reacting.”
Miriam Garcia-den Boer
feel free to reach out - just to connect or have a conversation.
LinkedIn: https://www.linkedin.com/in/miriamgarciaegea/
Wellbrain: https://www.wellbrain.nl/
Authors story Miriam: Zuzanna Kotwicka & Pauline van Gils
Author theoretical background: Thomas von Rein
