Recognizing Subtle Early ALS Symptoms in American Sign Language Users

Recognizing the Early Signs of ALS in ASL

Amyotrophic lateral sclerosis (ALS), sometimes referred to as Lou Gehrig's disease, is a progressive neurodegenerative condition that impacts the nerve cells responsible for controlling voluntary muscle movement. As these motor neurons break down, they can no longer send signals to the muscles, leading to eventual paralysis of the muscles.

While ALS often starts gradually, over time it robs individuals of their ability to walk, speak, swallow, and eventually breathe. However, if the early subtle signs and symptoms can be recognized, it may allow for earlier intervention and analysis. For those communicating in American Sign Language (ASL), being able to identify and articulate the initial symptoms can make a difference in obtaining a prompt diagnosis and starting treatment sooner.

The Subtle Early Symptoms of ALS

In the early stages of ALS, symptoms may be barely noticeable or discounted as insignificant issues. Some of the subtle early signs of ALS can include:

• Clumsiness or frequent dropping of items
• Noticeable weakness in the hands, arms, legs or feet
• Stumbling or tripping while walking
• A feeling of heaviness or stiffness in the limbs
• Slurred, slowed or distorted speech
• Twitching or cramping of muscles
• Excessive fatigue of the arms and/or legs

For those communicating through ASL, picking up on early hand and arm weakness, loss of dexterity, and clumsiness may provide the first clues that something more serious may be developing.

The Pattern of Progression in ALS

While the early subtle symptoms of ALS can be easy to overlook, taking note of the pattern of progression can underscore the seriousness. In ALS, there is typically a steady advancement, with symptoms becoming more noticeable and debilitating over time. In most cases, progression of ALS includes:

• Symptoms starting on one side of the body first, often in the hands, arms, legs or feet. Over time, the other side becomes affected.
• Difficulty with everyday tasks requiring fine motor skills, like buttoning clothes, writing, turning pages or using utensils. These activities may first become tiring but later become extremely challenging.
• Muscle stiffness, cramping or involuntary muscle twitches (fasciculations).
• Gradual slurring of speech and difficulty projecting the voice or being understood by others.
• Trouble swallowing food and liquids, sometimes accompanied by choking, coughing or drooling.
• Increasing clumsiness and tendency to stumble or fall.
• Shortness of breath with exertion or difficulty breathing when lying down, especially at a later stage.

While not all individuals experience ALS symptoms in quite the same order, noting the continuity often reveals an unfortunate forward progression where tasks become more and more laborious and demanding. By retaining focus on the pattern over time, individuals communicating in sign can highlight worrying changes sooner.

Impact of ALS Symptoms on Signing Ability

One of the primary ways those with ALS maintain communication for as long as possible is through ASL. However, as ALS advances, it begins to steal the abilities required to sign effectively. Being aware of how progressing symptoms can affect signing skills is important.

Some of the common impacts include:

• Hand and finger weakness makes intricate signs requiring dexterity challenging.
• Arm, hand and finger stiffness causes slower, smaller signing.
• Twitching and cramping of hands and arms interrupts signing.
• Requiring increased effort impacts signing stamina.
• Cognitive or behavioral changes may hamper communication.

Noting the specifics in how signing ability declines provides insight into how far the disease has progressed. Finding alternate communication strategies, from wider arm gestures to communication boards may help compensate for increasingly limited signing skills.

When to Seek Medical Advice

Recognizing early symptoms of ALS can accelerate diagnosis and treatment. However, distinguishing the early signs from normal aging is tricky. Those communicating through ASL should consider seeking medical advice when they notice:

• Ongoing loss of dexterity, strength or stamina in their upper limbs.
• Increasing difficulty or discomfort signing for usual durations.
• Subtle slurring or slowing of signs, especially if progressing.
• Constant fatigue, widespread muscle weakness.
• Repeated falling or difficulty walking.
• Clumsiness that interferes with routine activities.

While many underlying conditions can cause these symptoms, getting an expert opinion is wise, especially if issues seem to steadily worsen. A doctor can help rule out other causes or confirm suspicions through clinical exams, blood tests or EMG studies checking nerve and muscle function.

Coping with Advancing ALS When Signing

Despite hopes, ALS causes increasing disability over time. As the disease progresses, most people communicating through sign lose their ability to gesture effectively. Planning additional communication strategies can help reduce frustration and maintain critically important social connections.

Low-Tech Communication Aids for Signers

As signing becomes more tiring or limited, low-tech aids allow signers to conserve their energy while still expressing needs and participating in conversations. Options like:

• Dry erase writing boards
• Portable laptops or tablets with text-to-speech apps
• Prewritten messages or phrases on cards
• Picture boards
• Devices with commonly used words/phrases pre-programmed

While not as intuitive as signing, these tools enable signers with ALS to avoid isolation when signing is compromised. Training communication partners in their proper use is key.

High-Tech Augmentative Communication

More advanced speech-generating devices (SGD) translate text into digital voice. Sophisticated options allow storing personalized vocabulary and phrases to capture an individuals unique way of speaking. Some allow building messages letter-by-letter, while others impose less physical demand. With training, these devices restore communication for those losing signing abilities.

Choosing technology that aligns with current and future needs is crucial. Input from speech-language pathologists helps determine optimal solutions as ALS advances. Important features in SGDs for those accustomed to signing include:

• Methods requiring little manual dexterity as motor skills decline
• Alerting features like flashing lights to signify communications
• Typing shortcuts, word prediction and stored phrases to accelerate communication with less typing
• Eye gaze technology allowing device control through eye movements for those losing limb function

By starting to use communication aids while still signing reasonably well, future transitions to relying more fully on technology goes smoother when signing is no longer feasible.

Support Networks for Signers with ALS

Maintaining social connections amid advancing ALS often means adapting communication strategies. Support groups specifically for sign language users exist through organizations like the ALS Association. Connecting with others facing the same struggles combats isolation and creates solidarity through shared experiences.

Online communities for signers with ALS also continue growing. When travel becomes difficult, these virtual platforms allow engaging safely from home. Through messaging, video chats and conferences, these networks provide information and encouragement from peers worldwide.

Getting involved in these specialized support communities helps signers with ALS access accommodating spaces where their preferred communication mode is innately understood, even as the disease poses mounting challenges. Finding others navigating parallel circumstances reminds signers they are not alone.

The Ongoing Impacts of ALS on Communication

Despite every effort to stay connected, ALS inevitably claims the ability to sign for many. But while communication methods must continuously adapt, maintaining relationships remains vitally possible. Though relentless and emotionally taxing, adjusting communication strategies along the way can help counter the isolating effects of the disease for signers.

From magnifying subtle early symptoms to permanently losing the ability to gesture, the impact on communication is profound. Through assistive technologies and support groups tailored for signers, connections can continue, However, losing ones native communication mode undermines independence and identity.

Yet with innovative tools and a circle of support, signers with ALS need not endure the journey in silence. And by understanding the typical symptoms and pattern of progression, individuals can play a proactive role in shaping their care, communicating preferences and revealing when additional intervention becomes necessary across the course of the disease.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.