Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a progressive, neurodegenerative disorder that aggressively destroys nerve cells that control voluntary muscle movement. ALS is a fast-paced, aggressive disorder that is fatal to those diagnosed. While this disorder is seen most commonly in people aged 40 to 70, it has been seen in individuals as young as 20. While there is no cure for Amyotrophic Lateral Sclerosis, the medical and science communities continue to work on advancements through research regarding treatments and therapies for ALS patients. The average life expectancy for someone diagnosed with the disorder is 2-5 years; however, there are some individuals like Stephen Hawking for example, who have lived much longer with the disorder than others.
In some cases (1-2%), a gene mutation has been identified as a common denominator; however, this commonality is only seen in a small number of patients. Another 5-10% of patients have a family history wherein someone in their family tree has been diagnosed with the disorder. The medical community is still unclear about the exact cause of ALS, but through extensive research and case studies, some consistent factors are emerging that may help scientists find long-awaited answers.
The Impact of ALS on Patients – Quality of Life
Due to the aggressive and quick progression of Amyotrophic Lateral Sclerosis, patients living with the disorder tend to experience a wide array of conflicting emotions. Symptoms including slurred speech, physical instability, twitches, and in some cases, pain, can be perplexing and frustrating. Activities someone may have once enjoyed may become more difficult due to a decline in fine and gross motor skills. Once diagnosed, symptoms can progress to include difficulty swallowing and breathing, and eventually, paralysis.
The progression of ALS can leave patients feeling hopeless; after a life full of activity it can leave them unable to perform even the simplest tasks they once enjoyed. Once these uncontrollable symptoms begin, the diagnosis comes with the help of several medical diagnostics tools and procedures. Blood tests, biopsies, x-rays, MRIs, and even cerebral spinal fluid analysis can help medical professionals come to a clear diagnosis.
Once a clear diagnosis is made, treatments and therapies for ALS patients can begin to help individuals living with their diagnosis navigate the road ahead. Because ALS is such an aggressive disorder, it can be difficult to cope and come to terms with an outcome that is historically bleak. Promising research in gene therapy is making headway as researchers explore the potential for exciting new medications created specifically for rare disorders such as Lou Gehrig’s Disease.
Treatments and Therapies for ALS – What Helps, Now
At this time, there is no known treatment or therapy for Amyotrophic Lateral Sclerosis that stops or reverses the impact of ALS on the human body. There are two FDA-approved medications that have been observed to moderately slow the progression of the disorder in some patients, and several more that aim to control the symptoms that most individuals experience. Due to the rapid advancement of ALS in patients, non-drug therapies remain the most effective and beneficial methods to help control the progression of symptoms, and most medical professionals highly encourage their use in treatment plans. Below, we’ve listed a few of the more commonly employed non-drug therapies used in ALS treatment plans:
Living with ALS – Clara
- Occupational Therapy – This type of therapy assesses patients individually to target personal goals, and work on physical and motor therapies to help them maintain a specific quality of life. Occupational therapists help families and patients adapt to new limitations while implementing lifestyle changes that help them live as fully as possible.
- Physiotherapy – This type of therapy aims to manage pain and accommodate a person’s abilities to help them achieve physical goals. It can include physical therapy, rehabilitation efforts, and exercises to assist the patient function to the best of their abilities in their personal and professional lives. This can include breathing and eating therapies.
- Equipment specialists – As ALS symptoms progress, learning to use and effectively care for equipment needed to help patients live life to the fullest. From speech assistive technology to wheelchairs, and in some cases breathing devices, equipment specialists can help patients learn how to use devices to their fullest potential.
Coming to Terms With an ALS Diagnosis
A patient’s medical providers will be able to set a level of expectation when it comes to treatment efficacy, life expectancy, and what the terrain for you or your loved ones’ diagnosis means. While an ALS diagnosis is devastating for those living with it, friends and family will also experience a wide range of emotions and struggles. Know that you are not alone, and there are support groups and networking communities out there to help those diagnosed with ALS, and their loved ones come to terms and cope with this neurodegenerative disorder.
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