Mobility and Balance

The Balance Struggle of Neurodegenerative Disorders

Neurodegenerative Disorders and Balance

Walking in Shadows

Long before Gary was diagnosed, we visited the zoo with our family, excited to explore the exhibits. The reptile house was always a favorite stop, but as we ventured deeper into the dimly lit hallway, I noticed Gary’s steps becoming more hesitant. When we reached the main room, with only accent lights highlighting the reptiles, Gary suddenly lost his balance. He reached out, gripping the wall to prevent a fall. We were both puzzled and concerned. Why did the darkness affect him so profoundly? Our evening walks, too, became a challenge. Whenever we strolled through areas where trees cast dark, shadowy patches on the road, Gary would experience unsettling feelings of vertigo. Only later, we connected these incidents to a more significant issue: neurodegenerative disorders and balance, specifically Superficial Siderosis (SS).

The Link Between Neurodegenerative Disorders and Balance

Superficial Siderosis: A Silent Thief of Balance

Superficial Siderosis is a rare neurodegenerative disorder caused by iron accumulation in the brain and spinal cord. This iron deposition damages the nerve cells responsible for various functions, including balance. Patients like Gary often experience balance issues as the disease progresses, especially in low-light conditions.

The Role of Vision in Maintaining Equilibrium

Our vision plays a crucial role in maintaining balance. It provides essential information to our brain about our surroundings. Iron accumulation can affect the visual pathways of SS patients, making it challenging to process visual cues, especially in dimly lit environments. This disruption can lead to feelings of disorientation and increased fall risk.

Shadows, Dusk, and the Dark: Why They Pose a Risk

neurodegenerative disorders balance

The Challenge of Processing Incomplete Visual Data

Walking through shadows or in the dark means our eyes receive incomplete or distorted visual data. For most, the brain compensates by relying more on other senses. However, for those with SS, the damaged neural pathways struggle to process this fragmented information, leading to balance issues.

The Interplay of Visual and Vestibular Systems

Our vestibular system in the inner ear works with our vision to maintain balance. In SS patients, both these systems can be compromised. When walking in the dark or through shadows, the brain receives conflicting signals, leading to feelings of vertigo, as Gary experienced.

Superficial Siderosis Vision Problems

The Impact of Iron Deposition on Vision

Iron accumulation in SS not only affects balance but also vision directly. Patients may experience blurred vision, difficulty adjusting to different light levels, or double vision. These visual challenges further exacerbate balance issues, especially in challenging lighting conditions.

The Emotional Toll of Vision and Balance Issues

Beyond the physical challenges, SS patients often grapple with feelings of frustration, anxiety, and fear, especially when navigating unfamiliar or dimly lit environments. Understanding and addressing these emotional aspects is crucial for their well-being.

Assistive Devices to Prevent Falls

Walking Sticks and Hiking Poles: Essential Tools for Maintaining Balance

walking sticks for balance

The Science Behind Walking Sticks and Hiking Poles

Walking sticks and hiking poles are designed to provide additional points of contact with the ground, thereby increasing stability and balance. By distributing the body’s weight more evenly and offering support, they reduce the strain on the lower body and provide a sense of security.

Benefits for Individuals with Neurodegenerative Disorders

  1. Enhanced Stability: For those with SS who may experience a sudden loss of balance, walking sticks or hiking poles act as an extension of the arms, providing immediate support and preventing falls.
  2. Improved Confidence: Knowing readily available support can boost confidence, encouraging individuals to engage in activities they might otherwise avoid due to fear of falling.
  3. Adaptation to Various Terrains: These aids are versatile and can be used on different surfaces, whether it’s smooth pavement or a rugged hiking trail. This adaptability makes them suitable for various outdoor activities, even in low-light conditions where the balance might be more challenging.
  4. Customizable Support: Many walking sticks and hiking poles come with adjustable lengths and ergonomic grips, allowing for a personalized fit. This customization ensures that support aligns with the individual’s needs and preferences.
  5. Encouragement of Proper Posture: By promoting an upright posture, these tools can alleviate back pain and reduce fatigue, further enhancing the walking experience.

Choosing the Right Walking Stick or Hiking Pole

Selecting the right walking stick or hiking pole depends on individual needs, preferences, and the intended use. Factors to consider include:

  • Material: Lightweight materials like aluminum or carbon fiber offer ease of use without sacrificing strength.
  • Grip: Ergonomic grips provide comfort and control, reducing the risk of slipping.
  • Adjustability: Adjustable lengths cater to different heights and walking styles.
  • Additional Features: Some models come with shock absorbers, wrist straps, or interchangeable tips for various terrains.

Walking sticks and hiking poles are more than mere accessories; they are vital tools that can significantly enhance the quality of life for those dealing with neurodegenerative disorders and balance issues. Individuals can explore the world more freely and confidently by offering physical support and psychological reassurance.

Wearable Technology for Balance

How Wearable Tech Assists with Balance

Wearable devices designed to assist with balance typically incorporate a combination of sensors, such as accelerometers, gyroscopes, and magnetometers. These sensors detect movements and orientation in real-time. When the device senses a potential imbalance or an activity that deviates from the norm, it can send alerts or feedback to the user. This feedback can be in vibrations, sounds, or visual cues, allowing the individual to adjust their posture or movement accordingly.

Notable Brands in Wearable Balance Technology

  1. Zibrio SmartScale: This isn’t a wearable in the traditional sense, but it’s a highly innovative piece of technology for balance. The Zibrio SmartScale looks like a regular bathroom scale but is designed to measure balance. It uses advanced algorithms to assess stability in just 60 seconds, giving users a balance score. Paired with its smartphone app, users can track their balance over time, receive personalized feedback, and get exercises to improve stability. While it doesn’t provide real-time feedback like a wearable, it offers valuable insights into one’s balance and potential risk of falls.
  2. Lechal Insoles: These are smart insoles that fit into regular shoes. Originally designed to provide navigation cues through haptic feedback, they can also benefit those with balance issues. The vibrations can help wearers be more aware of their footing, especially in challenging terrains or lighting conditions.
  3. BalanceWear Vests: This innovative solution is designed to help individuals with balance disorders, including those suffering from neurodegenerative conditions like Superficial Siderosis (SS). These vests are equipped with strategically placed weights customized to each wearer’s unique balance deficiencies. By altering the body’s center of gravity, the weights provide gentle cues to the nervous system, helping to stabilize the body. This counterbalancing effect can significantly improve an individual’s ability to maintain an upright position, reducing the risk of falls and enhancing overall mobility.

The effectiveness of BalanceWear vests lies in their personalized approach. A trained therapist assesses the individual’s specific balance challenges and then adjusts the weights in the vest accordingly. This tailored weighting system allows for precise targeting of the areas that need support, providing immediate improvements in stability. For those with neurodegenerative disorders, where balance can be a daily struggle, BalanceWear vests offer a non-invasive and adaptable solution. They can be worn discreetly under regular clothing, allowing users to benefit from enhanced balance and confidence in various settings, from daily errands to outdoor activities.

As wearable technology continues to evolve, it’s essential to watch emerging brands and products that cater specifically to balance and stability needs. These devices can offer invaluable support to individuals with neurodegenerative disorders, enhancing their safety and quality of life.

Recognize Your Challenges

Understanding the intricate relationship between vision, balance, and neurodegenerative disorders like Superficial Siderosis is essential. By recognizing the challenges and equipping ourselves with the right tools and knowledge, we can ensure a safer and more comfortable experience for our loved ones.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

One Comment

  1. Thank you so very much for this newsletter. I have shared this with my PCP and my Optometrist. I have not found an opthmologist who is willing to work with me and SS at this point. Won,t give up!

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