Living with Spinocerebellar Ataxia (SCA) is a deeply personal experience. Everyone's journey with this progressive, degenerative neurological disorder is different, but there are some commonalities. My experience with SCA has been a mix of challenges and adaptation, fear, and learning to live in the moment.
For many people with SCA, symptoms appear subtly. In my case, it started with small things - tripping more often than usual, a little wobble in my balance, and the occasional difficulty in writing neatly or fastening buttons. At first, I didn't think much of it. I thought I was just clumsy or perhaps overworked. However, when these issues persisted and worsened, it became clear that something more serious was going on.
Seeking medical advice led to numerous tests and doctor visits. The turning point came when I visited a neurologist who, after conducting a series of examinations and gathering my family history, suspected I might have a form of ataxia. Genetic testing confirmed that I had Spinocerebellar Ataxia.
Receiving a diagnosis of Spinocerebellar Ataxia was devastating. The words “progressive” and “no cure” weighed heavily. At the time, I had never heard of SCA, and the idea that my condition would only get worse as time passed filled me with dread. However, I also felt a strange sense of relief - finally, I had a name for what was happening to my body.
In the days that followed, I found myself scouring the internet for information about SCA. I wanted to know everything - how long I would have before the symptoms became debilitating, whether I could still live independently, and whether there was any treatment that might slow the progression. The answers were both enlightening and overwhelming. While the progression varies from person to person, I learned that I could have years, even decades, of relatively functional living with the right support.
Life with SCA has required a significant shift in how I approach daily activities. Simple tasks, like walking, writing, and even speaking, have become more challenging over time. There are days when my coordination feels worse than others, and fatigue often sneaks up on me without warning.
Mobility: One of the first adjustments I made was to find new ways to get around. I started using a cane for extra balance, which gave me a sense of security in public. Later, I began using a walker as my symptoms progressed. These assistive devices allowed me to maintain a level of independence and continue doing things I enjoyed.
Writing and Typing: Writing by hand became nearly impossible as my coordination issues worsened. I transitioned to using voice-to-text software, which allowed me to stay productive at work and in my personal life. Adaptations like this have helped me maintain a level of normalcy in the tasks that once felt easy.
Speech: One of the most frustrating aspects of SCA has been the impact on my speech. When my dysarthria (slurred speech) started becoming noticeable, it was hard not to feel embarrassed. There have been times when people didn't understand what I was saying, and I've had to repeat myself slowly, which can be frustrating for both parties. Speech therapy has been a great help, teaching me strategies to manage and slow down my speech for better communication.
Energy Levels: Fatigue is a constant companion. On days when I overdo it, the exhaustion can be debilitating. I've learned to pace myself and manage my energy more effectively. For instance, I plan my days with breaks in between activities and ensure I get plenty of rest.
Living with a degenerative condition like SCA is emotionally taxing. The uncertainty about how quickly the disease will progress is always in the back of my mind. There are days when I feel like I'm losing the battle - when the physical limitations become more evident and my frustrations reach their peak.
Anger: At first, I was angry. Angry that my body was betraying me, angry that there was no cure, and angry that this disease was a part of my family's genetics.
Fear: The fear of losing more mobility, of needing full-time care, and of being a burden to my family often keeps me awake at night. It's not just the physical losses but also the potential emotional strain on those I love.
Acceptance: With time, however, I've learned to accept that SCA is part of my life. I've embraced the things I can still do and have found new hobbies and activities that accommodate my condition. Acceptance doesn't mean giving up; it means finding peace in what I can still control.
One of the most important aspects of living with SCA has been surrounding myself with a strong support system. My family, friends, and healthcare team have all played essential roles in helping me manage my condition.
Family Support: My family has been my rock. They've helped me through the bad days and celebrated with me on the good days. When I started using a cane, they were supportive and encouraged me to prioritize safety over pride.
Support Groups: Finding others who share similar experiences has been a lifeline. Through online forums and in-person support groups, I've connected with people who truly understand what I'm going through. These spaces have provided invaluable advice, comfort, and even a few laughs when things get tough.
Healthcare Team: My healthcare providers, including neurologists, physical therapists, and speech therapists, have been instrumental in keeping me functional. Their expertise has guided my treatment plan, and their encouragement keeps me motivated to stay as active as possible.
Though SCA is undoubtedly a difficult condition to live with, it has also taught me a lot about resilience, patience, and gratitude. I've learned to appreciate the small victories - whether it's making it through a day without a fall or successfully navigating a conversation without slurring my words.
It's easy to get bogged down by the negatives, but focusing on the things I can still do helps me maintain a positive outlook. I've also found joy in new hobbies that don't rely heavily on physical coordination, such as painting, reading, and even learning to play music using digital instruments.
The future is uncertain, but I'm determined to make the most of the time I have. Research into SCA is ongoing, and while there's no cure today, I hold on to hope that treatments will improve over time. I've signed up for clinical trials and donated to research efforts in the hope that one day, future generations won't have to experience this disease in the same way I have.
In the meantime, I continue to adapt and live life on my terms. While SCA has changed many aspects of my life, it has not taken away my will to live fully and meaningfully. Every day is a new challenge, but with the right support and mindset, it's a challenge I'm willing to face.