Anne Vandamme, suffering from multiple sclerosis: I am living in the moment, with the abilities that I still have!
Multiple sclerosis (MS) affects 12,000 people in our country. Anne Vandamme is one of them. An inspiring conversation with a patient for whom the glass is always half full, never half empty.
We meet Anne Vandamme at home in Mechelen. She begins her story with a steaming cup of coffee in front of her: “The media is paying far too little attention to multiple sclerosis. Once a year, there is MS Week, but even this week doesn't get much media attention. That's why I like to tell my story. In the hope that in the future, I won't have to hear phrases like “MS, oh yeah, it's a deadly muscle disease... “, because MS is not fatal and is certainly not a muscular disease, but an autoimmune disease that affects the central nervous system. Why isn't MS better known, like cancer, for example, which is getting a lot of attention and resources being freed up for?”
Unfortunately, multiple sclerosis was not an unknown disease for Anne Vandamme. Her mother and grandmother also suffer from this condition. “I have had MS for a number of years, but at first the disease subsided. It all started with an inflammation of the optic nerve in my right eye. I saw a gray spot that was growing by the hour. The ophthalmologist diagnosed me with an optic nerve infection and told me that there was not much I could do about it. So he prescribed vitamin B for me and I had to wait to see if it worked. As there was no improvement, I went to the hospital to see an emergency doctor. He examined evoked potentials to measure nerve conduction and confirmed the diagnosis of an optic nerve infection. He prescribed cortisone pills. This immediately improved the situation. But three months later, I had the same problem in my other eye. When more tests were done, it quickly became clear that I had MS.”
That's why I give €7 per month as part of a standing order. €7 for a year represents one day of research.
“Did treatment start immediately?”
Anne Vandamme: “No, we chose to wait at first. Looking back, I had several small relapses during this time, but they were quite limited. I paid little attention to it. I went to work, I had my family, I was busy. It was only a few years later, in 2011, when I went to the neurologist for a checkup, and based on the MRI results, that I thought it was advisable to start inhibitory treatment, especially since nowadays there are products that actually slow the progression of MS in many people. For 6 years, I injected myself with one treatment every day.
During these 6 years, I also contacted the National MS Center in Melsbroek. I was very well supported by a multidisciplinary team. I went there for a few weeks to rehabilitate myself. Once a year, I go there again for 4 weeks to rehabilitate and it's really great. The atmosphere between patients and between patients and therapists is really comforting. We all have the same disease. In this assessment, everything is covered and everyone receives follow-up and advice based on their problems. I enjoy these 4 weeks that I have all to myself.
At first I didn't feel quite comfortable there because I am much better physically than some of the other patients. But each person with MS is different, the disease progresses differently depending on the case. They may have been physically affected more severely, but they are still very quick-witted. But I am much more confused. I have a lot more problems concentrating and paying attention, sometimes I can't find my words. My mind is foggy. I love to read, but it's not that easy because very often I have to go back a few pages because I can't remember anything.
Sometimes it is very difficult to explain this to people, even to my own family. They tend to tell me that “it happens to everyone to forget things.” Sometimes it's frustrating because I know it's MS. But I admit that I say very little about it. I can't stop thinking about it.
“You have two kids. How do they deal with that?”
In the meantime, my son and daughter have grown up. When they were between 8 and 10, I explained to them that I had the same condition as their grandmother, who was in a wheelchair. “I haven't told you yet, but I have the same disease as grandma.” It is also very difficult for them. Especially for my daughter who is the next girl in the family. The risk of developing multiple sclerosis is 1 in 1,000. For someone who has a family member with MS, the risk is much higher. But the chance of not contracting the disease is even more so. That's how I see it. For me, the glass is always half full, never half empty. My grandmother had MS. She had 6 children, 5 of whom did not have MS. She had 17 grandchildren, 16 of whom did not have MS.
Naturally, I remain vigilant, I am more careful.
“How are you coping with the disease now?”
I am lucky because I can still do a lot of things by myself. There are things that are now impossible and unattainable, but I am focused on what I can still do. Even though my abilities are getting smaller every day. For example, I always wake up tired, and with pain in my back and legs. Sometimes it's torture to get out of bed. But once I'm up, I'm ready for what's next, even if I'm exhausted throughout the day. My husband told me right from the start, “We now have this disease and we just have to wait and see what happens.” But even though we had already experienced the disease process in my mother, we came to the conclusion that it is not so simple. I can't do some things anymore and that means saying goodbye to my habits and adapting to a new situation every time. My family is also grieving at these times. For example, I can't go for a walk on the beach anymore. When I go out, I use a walker and that's not possible in the sand. But I can still enjoy a walk on the embankment. My husband has more problems with this, while it is easier for me to find an alternative. I always focus on what is still possible.
“Has your treatment changed a lot over the years?”
Yes, that's the good thing about my annual stay at the MS clinic. Neurologists there are real specialists who monitor everything that is known and developed for MS. I tell my story, I am undergoing tests... At some point, they found that the injections were no longer enough to slow the progression of my disease. At the end of 2017-beginning of 2018, I switched to second-line medications. Now I get an infusion every 4 weeks with Tysabri, a powerful MS inhibitor, and I hardly have flare-ups anymore. Each time, I have to go to the hospital for half a day. For me, it was a relief to no longer have to inject myself daily. I felt like a pin pin.
Of course, I am also very well followed. Two to three times a year, I have an MRI and they check what's going on in my brain, whether or not there are active injuries. The fact that I am now being monitored so well with this medication makes me feel good.
“Do you often think about the future?”
No, not really. We'll see. I am living in the moment, with the abilities that I still have! In the meantime, science is constantly evolving. And it is really necessary! Because there are a lot of young people with MS. I am over 50 years old, but I hope from the bottom of my heart for future generations that the cause of this condition will be found quickly. Of course, this requires financial resources. That's why I give €7 per month as part of a standing order. €7 for a year represents one day of research.