Ataxia and Anxiety: Our Experiences

Part II of a Three Part Series

This post is available in an audio podcast format HERE.

This past long weekend I drove myself the 210 kilometres to Calgary. Whether I am doing the driving or being driven, the motion of the vehicle relative to the landscape is a bit disconcerting and I try to maintain a general view of the horizon ahead. This was a bit of a planned test trip. I was to attend a birthday dinner at a small, very popular restaurant later in the day. But I wanted to meet with two friends for lunch. We have a running lunch gag about dining out at the IKEA cafeteria. It’s Saturday and I knew the store would be very busy.

I decided early on that I would use my trusty transfer folding wheelchair, Smirf. So many of us have commented about how stores, with their layouts, lighting, and moving bodies can be a problem. I am in that crowd. I wasn’t going to chance it and knew the wheelchair would be more comfortable and safer. The Calgary IKEA is a huge, full size operation, but oddly, I think my local Safeway supermarket with its 16 handicapped parking stalls has more spaces. There were none available at IKEA, but luckily for me right beside the last one was a space for environmentally friendly vehicles and I drive a hybrid! I took the spot, climbed out of the car and was confronted with extreme tremors, titubation, and nystagmus, all the product of the road trip. I shakily hand-over-hand walked to the back of the vehicle and unloaded Smirf. Buckled in, I immediately felt better, and pushed on to the entrance.

The place was busy like a hornets nest, but I made my way over to the elevator and ascended to the second floor cafeteria to await the arrival of my friends. We had a terrific visit catching up. However, throughout the visit I noticed that I did not stop moving or bobbing. My tremors were affecting my speech far more than usual. We chatted for 90 minutes and nearing the end, my symptoms had become less kinetic.

I was clearly stressed by the travel, the store environment, and anxious about being in a big crowded space where I had not been since my diagnosis over four years ago. What are the types of anxiety-stressors that bother us? Is there anything we can do about it?

This kind of discussion requires social science research rather than medical research which dominates the mainstream ataxia foundations and groups. Being a social scientist, I reached out to our world of friendly Ataxians participating on the FaceBook group, “Cerebellar Ataxia”. With the help of 19 other patients, I have been able to illuminate four distinct sources of stress and anxiety. These four are illustrated through examples these Ataxians experience. Please keep in mind, this is anecdotal in nature. A larger sample may produce an even richer picture of Ataxians’ stress and anxiety experiences.

Through a process of analysis, I was able to illuminate four sources that generally produce stress and anxiety:

• The environment we find ourselves in;

• Our physical self;

• How our Vision and other senses function and support us; and

• The personal pressures we feel or place on ourselves.

The environment we find ourselves in

Being in open, chaotic spaces like stores or airports where not only are there visual over-stimulation challenges, but also the movement of crowds, is an environment that creates anxiety and stress for Ataxians. In one of my recent posts, I explored how taken-for-granted-things like store lighting, rows upon rows of similarly appearing objects and patterned flooring can add stress to our visual capacities that are often disabled with nystagmus and vestibular ocular reflex dysfunction associated with ataxias. A number of Ataxians emphasized how crowds of people, moving haphazardly can trigger increased symptoms. We are sensitive to how people may be perceiving us in these situations as well sometimes producing negative self-image and stress. Noises and noise levels can also incite symptomatic responses which seems totally reasonable given the connection between our vestibular functions and the cerebellum. One individual used the word “disharmony” in the environment; a term that expands our thinking about the environment to include not just physical, or sensual discord but also emotional unrest. Not feeling safe physically or emotionally can produce subtle stress that can easily elevate our symptoms.

Weather and more specifically, air pressure and wind, temperature, and humidity were also noted by Ataxians as an environmental contributor to triggering symptoms. Hot and cold temperatures have been long reported as intolerable by those with certain ataxias and MSA patients. Simple shivers can easily turn into hours of body tremors. I live in an area with strong Chinook winds which are accompanied by rapid air pressure changes. These conditions cause problems for many people without ataxia, but I notice that my symptoms can get pretty wild during a Chinook. Weather conditions that impact our visual acuity like low light fog, rain, snow, or cloudy days were reported as problematic for Ataxians in this survey.

Our physical self

Many, if not most days, our physical self seems to betray us. People reported that exertion and fatigue starts a cycle of symptoms and ultimately exhaustion. Walking and struggling to maintain balance and control strips us of energy needed to mentally maintain motor control. We begin to shake and wobble. Simply standing can quickly devolve into wobbling, shaking, and trembling. Our eyes attempt to stabilize our sense of coordination and balance but often let us down as we feel them darting about. One respondent reminded us of the ever present online Q&A about suffering an illness and having symptoms not only escalate but develop into a new normal that is not really wanted. If we feel at physical risk, such as not being able to respond to an emergency adequately, anxiety develops resulting in increases in symptoms.

How our Vision and other senses are functioning and support us

Above I touched on how noise was reported by Ataxians as something that can trigger increased symptom issues. Sudden, loud noises apply stress to a nervous system that is already struggling with misfiring nerves. The chaotic noises of traffic, public transportation, and even a noisy restaurant challenges us to attempt to filter sounds using a neuro-system that experiences physiological disturbances between input (ears) and processor (cerebellum). Even the loud voices or shouting in our own homes can create the conditions for symptoms to become nearly unbearable. Touching something becomes an exercise rather than a synchronized movement and the more we try to control it, the worse it sometimes gets. It seems that our compromised vision processing produces significant anxiety and stress for Ataxians. We become frustrated as we attempt to read and worry if we will ever read a book again. The vision issues causes us to be concerned about our safety while walking or driving. Looking side to side or up and down can initiate strong senses of being off balanced resulting in our miss stepping, staggering, and evening falling. Knowing this reality produces anxiety as we wonder when our next topple or tumble will occur.

The personal pressures we feel or place on ourselves

Our own thinking can be the stimulus for triggering symptoms. Do you question yourself as to how well you are going to be able to accomplish a task? How do your emotions and in turn, symptoms react to that ignorant comment or action someone made in front of you — “You kind of look drunk.” “It’s not ski season, why do you have your poles still?” “Well, you look just fine, so why not come along?” How we perceive ourselves or our self image cannot only induce stress and anxiety triggers that increases ataxia symptoms, but it can also encourage us to avoid situations and isolate ourselves.

People reported they were very anxious about how others viewed them in public and how the looks and stares from people created great discomfort. This is not simply psychological. In 2019, a study of Ataxians described how the cerebellum plays a role in our perception of other peoples’ movements and actions. The research argued that ataxia can alter and impair our social cognition or how we perceive those looks, stares, and the comments that others give.

A few Ataxians noted that family conflicts like yelling produces emotional responses that in turn stimulates ataxia symptoms. Some respondents reported that one of the strongest neutralizers of stress related ataxia symptoms was to find calm, and create quiet mindfulness; a rather simple solution that for many is sometimes beyond reach.

As an Ataxian or anyone with a neurological disease that includes an ataxia component, I am sure you can see yourself in these descriptions offered by my survey participants. I certainly do. Stress or anxiety are felt by everyone. And many people have psychologically-based-responses including phobia creation, isolation, imposed shyness, and sometimes debilitating anxiety disorders. Ataxians have an additional layer in that much of the stress and anxiety we experience is grounded in a physiological condition unlike the rest of society. Our sense and our reality of losing our balance produces a stress response which in turn heightens our symptoms of being off balance producing even more stress and anxiety.

Managing this situation, I believe, is needing to first understand the interrelationship these things have to one another. In part one we developed an understanding about how neurons within our cerebellum are misfiring and firing chaotically producing visual and motor responses that are not normal. In this part we looked at what we are actually experiencing when we are stressed and anxious — two elements that fuel the neuron misfiring. The next post will consider the negative ramifications of allowing this situation to overwhelm us and some positive steps we can take to help bring balance to our condition.

As reported in Psychology Today: Nov. 22, 2019: Abdel R. Abdelgabar, Judith Suttrup, Robin Broersen, Ritu Bhandari, Samuel Picard, Christian Keysers, Chris I. De Zeeuw, Valeria Gazzola. "Action Perception Recruits the Cerebellum and Is Impaired in Patients with Spinocerebellar Ataxia." Brain (First published: November 21, 2019) DOI: 10.1093/brain/awz337