I’m a 36 year-old Australian woman living in the Netherlands with my Canadian husband. I have Paraneoplastic Cerebellar Degeneration, a neurological condition and severely impairs my balance, coordination and speech. My body doesn’t do what I want it to and this is my story.
In September 2015 I fell over at a large coffee event for my employer. I was embarrassed and I wasn’t sure what happened, but I didn’t think much of it at the time. A month later, I had two particularly nasty colds back to back while my husband was out of the country. I eventually recovered, but I still felt miserable. I was very tired, all the time. My walking felt funny- like my legs weren’t doing quite what I expected them to. But I was stubborn, and I didn’t want to accept that something was wrong. I told myself it would pass. As my walking got worse, I started to realize that my balance was off. I finally went to see my doctor and she wrote it off as an after-effect of the flu. I broke down in the car on the ride home. I felt ignored. I went out and bought a cane so I could keep working. I told people that I had broken my toe to avoid further questions. Eventually my gait got so bad that my husband convinced me to get a second opinion. I made a list of others symptoms that had started to notice: weakness, lack of coordination, shaking in my arms and legs. The second doctor knew something was wrong, but she couldn’t diagnose me. She referred me to a neurologist, and I remember crying during the appointment because someone was finally listening.
My specialist appointment was still months away, but by December I could barely walk. I saw my new doctor after a work trip and she sent me straight to the emergency room of the Amsterdam VU hospital. I was given blood tests and an MRI, and was then moved to a shared room in the neurology ward. I was overwhelmed by the other patients. Some were recovering from strokes. Some were in various stages of neurodegenerative disease like ALS, MS and Parkinsons. I was angry and scared, I was far from home and I didn’t speak the local language. The doctors gave me a spinal tap, and then just left my husband and I to find our way back to the room on our own. Then back in the ward, the nurse refused to close my privacy curtain. My husband tried explaining that I was emotional and needed some privacy to calm down. The nurse seemed shocked. She scoffed, “Privacy? In here?”, and walked away. I burst into tears and had a panic attack. I remember repeating over and over that I needed to leave, struggling to get dressed while my husband tried to calm me down. I left the hospital and the nurse caught up to us outside, making us sign a waiver. The entire situation was horrible. I’ve never been so emotional. Thankfully, my GP was able to refer me to the Amsterdam AMC Hospital, where they took over the investigations. The treatment I received there was, and continues to be, fantastic.
In January 2016 I was diagnosed with Paraneoplastic Cerebellar Degeneration. The investigations revealed the anti-yo antibody, which was attacking my cerebellum. The cerebellum is the part of the brain that controls balance, coordination, speech and fine motor skills- like zipping up a jacket. The doctors couldn’t find any cancer, so they focused on stabilizing my immune system with the hope recovering function. They started me on IV steroids for three days every month, which seemed to offer stability, but no improvement. Then, I was given IVIG for three days every six weeks. After that they tried Cyclophosphamide tablets. When none of the medications offered any improvement, they waited. After a while they tried Rituximab, which wasn’t covered by insurance and amazingly, the hospital paid for it. It had shown promising results in a few reported cases around the world, but unfortunately for me there was no effect.
I had these treatments over two years while having cancer scans every three months. In September 2016 the doctors found metastasized cancer cells in my armpit. They didn’t find a primary tumour, but decided to treat me for breast cancer given the location of the cells and the types of antibodies I was diagnosed from. I had 15 months of chemotherapy, followed by radiation and a preventative double mastectomy without reconstruction. There was always the chance that a primary tumour existed in the breast tissue and was too small for detection, and I didn’t want to take any chances with more neurological damage. I chose not to have reconstruction because I didn’t want multiple surgeries and extra pain – save the woman not the breasts is my mantra.
Following the successful cancer treatment, my neurologist told me that was nothing more he could do in terms of clinical improvement. It was time for me to focus on rehabilitation, to see what kind of functional improvement might be possible. My rehab program included occupational therapy, physical therapy, speech therapy, psychology, psychiatry, hydrotherapy and more. It was really hard. Not just the physical therapy, but the psychology, too. It forced me to admit that I needed help emotionally. I was miserable. I was crushed that I had to give up work and I was angry. And even though I wanted to reach out to people, I didn’t feel prepared to face them. I started as an outpatient at Heliomare, a speciality rehabilitation facility, in November 2017. When I started I was given a six minute test where I had to walk as far and as fast as I could with a rollator. I made it 68 meters. In January I made it 146 meters. In my final week of rehab at the end of March 2018, I was given a final test and made it 223 meters! Thanks to therapy and medication I’m happier now. I’m not so anxious any more. I still have days where I’m sore, tired and I fall into old habits, but thanks to what I’ve learned and my ongoing physical therapy at home, I’m calm, positive, and motivated to keep healing.
That’s my story until now.