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Understanding ALS: An In-Depth Look

collage of people with ALS

At ALS United Greater New York, we believe in empowering individuals and families impacted by Amyotrophic Lateral Sclerosis (ALS)—often referred to as Lou Gehrig’s disease—with comprehensive care, pioneering research, and strong advocacy. ALS is a neurological disease that gradually attacks nerve cells in the brain and spinal cord which are critical for controlling voluntary muscles.

This neurological condition leads to muscle weakness, wasting (atrophy), and involuntary muscle twitching (fasciculations). It usually results in a loss of the capacity to speak, eat, move, and breathe. While most individuals with ALS face respiratory failure within 3 to 5 years from symptom onset, it’s essential to recognize that senses such as sight, smell, taste, hearing, and tactile recognition remain unaffected. Our collective fight is not just about managing symptoms—it’s about preserving the quality of life and dignity for everyone touched by this disease.

The History and Discovery of ALS
ALS, often known as Lou Gehrig’s disease after the illustrious baseball player whose life it claimed, stands as a symbol of the challenges faced by those with motor neuron diseases. Although rare, ALS is the most prevalent motor neuron disease, touching lives across all races, ages, and ethnic backgrounds without prejudice. At ALS United Greater New York, we carry the torch of history with us as we forge ahead with purpose, dedicated to propelling research forward and delivering unwavering support to the individuals and families grappling with the effects of ALS.

Understanding the Symptoms of ALS: Early Symptoms and What to Look For
The onset of ALS can be elusive, with its signs often being dismissed or overlooked due to their subtlety. Among the earliest indicators to be vigilant for are fasciculations, which are small, involuntary muscle twitches. Additionally, individuals may encounter muscle cramps, rigidity, and stiffness, as well as muscle weakness that generally impacts one limb at a time. Speech difficulties are also common, manifesting as slurred or nasal speech while eating or drinking can become troublesome due to challenges with chewing or swallowing.

As these initial symptoms progress, more evident signs of muscular weakness or atrophy can emerge. It’s these developments that may lead a healthcare provider to consider a diagnosis of ALS. At ALS United Greater New York, we stand ready to support those facing these early symptoms through our full spectrum of care services, all aimed at managing symptoms and preserving patient quality of life.

Progression of Symptoms Over Time
Over time, ALS affects various parts of the body. Initially, symptoms might manifest in a single region, but as ALS progresses, they extend to other areas. The ability to stand or walk, maneuver in and out of bed independently, or manage tasks requiring hand and arm coordination may become severely compromised. Additionally, eating and nutrition come to the fore of concerns as difficulty swallowing (dysphagia) and chewing may impair a person’s ability to consume food normally, heightening the risk of choking and complicating weight management. At ALS United Greater New York, we understand these challenges intimately and provide holistic care services, including tailored nutritional guidance, to support individuals and their families navigate these changes and maintaining their quality of life.

Physical Impact: Mobility and Muscle Function
Most people with ALS die from respiratory failure, on average within 3 to 5 years from the onset of symptoms. However, about 10 percent of those with ALS defy the odds and survive for 10 or more years. Despite the degenerative nature of the disease, it’s possible for many individuals to maintain a strong and productive quality of life. By tapping into adaptive technologies, such as mobility aids, communication devices, and home modifications, those affected can continue to engage in meaningful activities and maintain a sense of independence.

ALS United Greater New York is committed to supporting individuals at every stage of their journey with ALS. We facilitate access to cutting-edge technologies and collaborate with specialist care groups to ensure that everyone has the tools and assistance needed to live life fully. Our community recognizes the resilience of those living with ALS and offers resources and guidance to help maintain the highest possible quality of life.

Cognitive Impact:
In addition to physical symptoms, ALS can also affect cognitive functions. Fronto-temporal dementia is seen in some ALS patients. Its symptoms may include changes in social and personal behavior as well as in executive functioning, apathy, compulsivity/impulsivity, and language deficits. Pseudo-buolbar affect, while not specifically cognitive in nature, can be seen in approximately 30% of ALS patients. Its symptoms include uncontrolled or inappropriate laughter or crying. Here at ALS United Greater New York, we understand these profound changes and provide tailored support services, including counseling. Our goal is to enhance the quality of life for individuals and their loved ones by empowering them to cope with the evolving physical and cognitive landscape. Our comprehensive arsenal of care extends beyond physical aids, encompassing emotional and psychological support, as this is inseparable from the holistic care approach the individuals we serve deserve.

Scientist ALS Research

Current Research and Future Prospects: Promising Treatments on the Horizon
While there is currently no cure for ALS, the landscape of treatment is marked by vigorous research efforts. The FDA-approved medications Qalsody (tofersen), Relyvrio (AMX0035), Radicava™ (edaravone), Rilutek (riluzole, now generic) offer some patients improved survival rates and a potential slowing of physical decline. Beyond these existing options, scientists are delving into the genetic underpinnings of the disease, investigating the specific genetic mutations that may lead to ALS.

ALS United Greater New York’s commitment extends to supporting these crucial research avenues. By staying at the forefront of scientific advancements, our hope is bolstered by the potential of emerging treatments. We are confident that the work being done today is paving the way for groundbreaking therapies in the fight against ALS.

The Future of ALS: Hope and Challenges
The future of ALS presents both hope and challenges. Researchers are working tirelessly to find ways to halt the progress leading to cell death, a key aspect of ALS. However, a cure for the disease remains elusive. Each person with ALS is affected differently, and the disease can progress at varying rates, adding to the complexity of managing and treating the disease. At ALS United Greater New York, we hold onto hope for a future where ALS is a thing of the past. We stand united in the fight against ALS, providing support, advocacy, and resources to those affected by this disease.

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