Introduction
Lou Gehrig’s disease, scientifically known as Amyotrophic lateral sclerosis (ALS), is a devastating disease that affects both the nerves and muscles of the body. It is a progressive disease that eventually leads to the paralysis of the entire body. ALS is a difficult diagnosis for anyone, and those living with the disease face significant challenges. In this article, we will explore what ALS is, its history, personal stories from those living with the disease, current treatments and research, and ways to support advocacy efforts.
What is Lou Gehrig’s disease?
ALS is a rare and incurable nervous system disease that involves the degeneration of motor neurons which are responsible for controlling muscle movements. The exact cause of ALS is still unknown, but scientists believe that genetics and environmental factors could play a role in its development. ALS disease affects genders and all races, but it primarily affects those between the ages of 40-70 years. There is currently no cure for ALS, and available treatments only focus on slowing the disease’s progression and managing its symptoms, such as breathing difficulties and muscle weakness.
Individuals diagnosed with ALS will experience muscle weakness and wasting which will eventually lead to paralysis. The rate of disease progression varies among individuals, and some people may experience a more rapid progression than others. In general, individuals with ALS will have difficulty with self-care and respiratory functions within three to five years of the onset of symptoms.
Personal stories of those living with ALS
ALS affects not only an individual’s health but also their personal, emotional, and social well-being. Those with ALS often face difficulties as they watch their abilities diminish over time. It can affect their personal relationships, their careers, and their financial situation. However, many people with ALS find ways to manage the challenges of the disease and maintain a positive outlook.
One individual living with ALS is Steve Gleason, a former professional football player. Steve was diagnosed with ALS at the age of 34. After his diagnosis, he founded Team Gleason with the goal of inspiring and empowering people living with ALS. The organization focuses on providing equipment, technology, and assistance to individuals living with the disease to ensure they have a fulfilling life and sense of community.
Another person with ALS who has gained attention is Pat Quinn, who is known for co-founding the popular Ice Bucket Challenge in 2014, which helped raise awareness and funds for the disease. His foundation, Quinn for the Win, strives to provide care and essential needs for individuals with ALS. These personal stories are just two examples of how people with ALS are finding ways to make positive changes and bring awareness to the disease.
History of the disease
Amyotrophic lateral sclerosis was first described in 1869 by the French neurologist Jean-Martin Charcot. The condition was named after the famous American baseball player, Lou Gehrig, who was diagnosed with the disease after retiring from baseball in 1939. Lou Gehrig passed away two years later at the young age of 37, sparking a discussion about the disease and its effects on the body.
Since Lou Gehrig’s death, there has been a significant amount of research efforts and advancements in the understanding of the disease. While there is still much to learn about ALS, researchers have gained a better understanding of the disease’s cause and possible risk factors. This new information has provided potential treatment options that can manage symptoms and improve quality of life.
Treatment options and ongoing research
ALS has no cure yet. However, treatments are available that can help manage the symptoms of ALS and improve quality of life. These treatments focus on improving a patient’s breathing and reducing muscle stiffness and weakness. Riluzole, an FDA approved drug, is the only known drug that can slow the progression of ALS. Antidepressants and muscle relaxants may also be used to mitigate some of the emotional and emotional effects of ALS.
There are also several ongoing research studies focused on developing treatments and ultimately finding a cure for ALS. Some of these research studies include stem cell treatments, gene therapy, and the use of neurotrophic factors to support neuron survival. These research efforts provide hope for those with ALS and their families that there may soon be a cure for this debilitating disease.
Advocating for ALS awareness and funding
With increased understanding of ALS and new treatment options, it is more essential than ever to raise awareness of the disease and advocate for more funding for research. The ALS Association is one of the organizations dedicated to raising awareness of and funds for ALS. Their efforts are focused on research, patient and community services, public education, and advocacy.
As an individual, you can support the advocacy efforts by donating to these organizations or creating fundraising events. Share stories and experiences about people living with ALS on social media platforms or start a conversation with friends and family about the disease.
Coping with the emotional toll of ALS
ALS is a disease that not only affects the body but also the emotional and mental well-being of the person and their loved ones. Individuals with ALS faced significant challenges such as feelings of anxiety, hopelessness, and grief. Family members and caregivers also face an emotional toll of taking care of their loved one’s physical and emotional needs.
It is essential to ensure that those with ALS have a strong support system that can help them cope with the emotional stress. Support groups and counseling are two practical resources that can provide comfort and guidance to both people with ALS and caregivers. Scheduling regular family and self-care times can also help alleviate stress and prevent burnout.
Conclusion
ALS is a debilitating disease that affects not only the person living with it but their loved ones too. Research has provided some treatment options to support those with ALS. However, there is still much to discover on the disease, making advocacy and funding efforts crucial. It is also essential to provide emotional support to those living with ALS by offering practical resources such as support groups, counseling, and other self-care practices. Let’s continue to advocate and support ALS research and strive towards a cure.
