Hi there! My name is Stephanie and I was diagnosed with paraneoplastic cerebellar degeneration (say that ten times fast) in the fall of 2015. This is around the time that I connected with Amanda on Instagram, and we have compared symptoms and followed each other’s progress ever since.
At the time of my PNCD diagnosis, I was battling another serious illness: a rare blood cancer called Hodgkin’s Lymphoma. After months of tests and consultations with various doctors- even doctors thousands of miles from my Spokane, WA home- I discovered that my sudden inability to walk and control my hands, legs, and feet was not merely a symptom of Hodgkin’s. Rather, the debilitating symptoms occurred because my body had an autoimmune reaction to the cancer. In simple terms, my immune system tried to fight the malignancy, but instead attacked my cerebellum, the area of the brain responsible for balance and coordination. This phenomenon is not limited to Hodgkin’s; it can occur alongside many other cancers and viruses.
If you have been following Amanda’s journey, then you know that PNCD is difficult to diagnosis and even more difficult to treat. I was fortunate enough to receive ABVD chemotherapy and radiation along with an infusion drug called Rituximab, and this combination of drugs began to gradually lessen my symptoms and, eventually, I was able to walk again, use my limbs, and complete everyday tasks like driving, cooking, cleaning, etc. However, I am a rare success story. A patient with the same diagnosis and symptoms as me will not necessarily respond to this treatment in the same way. For many PNCD patients, symptom relief is a frustrating process of trial and error and, often, full or even partial recovery is unlikely.
I want to emphasize how fortunate I am to be on the other side of this strange illness. When Amanda and I first connected on social media, I was deteriorating at an alarming rate. Every morning I woke up a little worse off than the day before: one day I could move with a walker, the next day I needed a wheelchair; one day I could bathe on my own, the next I needed my mom or sister to assist me. Some days it was difficult for me to brush my teeth. My body felt alien to me; I was weak and immobile, and no one could tell me- definitively- that I would get better. This echoes the experience of many other PNCD sufferers: the disease progresses rapidly within the initial weeks/months until it immobilizes the patient, leaving him/her unable to walk. What started as a strange wobbly feeling in my left leg progressed, within a matter of weeks, to severe ataxia in both of my legs, my arms, and my trunk. I moved like someone who had suffered a stroke or consumed seven gin martinis. I could not get far without a wheelchair. My independence, which I value deeply, was virtually nonexistent.
Fast forward to today, about three years later, and you might assume by looking at me that I am 100% recovered. As I stated earlier, I am a rare success story. Medical intervention allowed me to regain most of my balance and walk without assistance, which is rare in the world of PNCD. Physical and occupational therapy further aided my recovery. However, I still have some lingering issues from PNCD that affect my everyday life such as stiff joints, fatigue, and anxiety.
One of the most unpleasant long-term effects of PNCD, for me, has been stiff, painful joints. Although I am moving much better than I use to, my gait still feels slightly “off” and, if you observe me closely, you will notice that I still have mild ataxia. It’s not uncommon for me to stumble, bump into walls, or drop things. Like other PNCD sufferers, I constantly worry about falling. This is especially true when I am in crowded or busy environments, when I am surrounded by people, or moving at a fast pace, I often compensate for my poor balance by stiffening my leg muscles and hyperextending my knees. Physical therapy has allowed me to correct much of this behavior, but it is still something I do regularly, often without realizing it, when I feel vulnerable or stressed. After an especially busy day at work (I work on my feet) or an active day of leisure, my leg muscles are usually sore and stiff.
Even though I have been relatively mobile for the last two years, I still need more rest and recovery time than the average 26-year-old. As you probably guessed from the previous paragraph, everyday activities often leave me fatigued. I like to stay busy and active but, because of my physical limitations, a bit of downtime is an essential component of self-care for me. Most days, I try to set aside an hour or two to read, watch a movie, do a bit of journaling, or take a short nap. I consciously avoid overfilling my schedule and prioritize rest over play time.
Anxiety is, perhaps, the most debilitating symptom of my PNCD experience. I have always had a busy, restless mind; according to my mom, even as an infant I had difficulty relaxing and falling sleeping. Ever since I can remember, I had a constant underlying fear that something could and likely would go wrong. Anxiety is often explained like this: the sufferer perceives his or her environment as dangerous and employs various mechanisms to cope with the (perceived) threat. (hyper-vigilance, restlessness, irritability, overeating or skipping meals, to name a few symptoms) This feeling of constant worry worsened after my diagnosis. For a long time, after I returned to my everyday routine, I struggled with panic attacks and insomnia. I obsessed over the possibility that things could get worse (because they often did). I worried about leaving the house, especially if my balance was feeling off, because I did not want to fall and lose months of physical progress. During my recovery, I set a goal for myself to walk at least 2 miles a day with my walker. I often met this goal by pacing down the halls of my own home, because it felt familiar and safe. Despite the fact that I had a loving support system, I felt isolated and depressed, convinced that no one could understand my struggles. Even now, I must constantly count my blessings and lean on my family/friends to avoid the familiar feeling of despair and anxiousness.
Today, and even more so at the apex of my illness, I am more physically vulnerable than the average person (at least the average young person). For someone with anxiety, this is a harrowing reality. I am vulnerable. Not just in my mind, but in reality. Things could go very wrong if I do not pay attention. In the cold months, when the side walks are icy and slick, I need to be especially careful to avoid a fall. When I am at a concert or shopping center full of people, I need to pay close attention to the people around me, again to prevent a fall. The same applies to climbing flights of stairs, walking on uneven pavement, shuffling through poorly-lit areas, etc. Situations that are not threatening to the average Jane are challenging, and often frightening, for me.
I want to say, again, that I am extremely fortunate to be as mobile and independent as I am. I know that I am the exception, and not the rule, in the world of PNCD. However, I am making a conscious effort to be more honest and direct about my limitations and feelings of vulnerability. Yes I look better. Yes I move better. But I am still very much learning how to cope with the physical and emotional implications of PNCD.