top of page
Search
  • Writer's pictureJason Ryser

5 Ways To Slow Your ALS


Amyotrophic Lateral Sclerosis (ALS) is a challenging neurodegenerative condition that affects approximately 5,000 new people each year. ALS, also known as Lou Gehrig’s disease, progressively impairs nerve cells in the brain and spinal cord and impacts muscle control.

Each person's experience of living with ALS varies greatly, with symptoms ranging from muscle weakness to difficulties with speaking, swallowing, and eventually breathing.

Understanding ALS and taking a proactive approach to managing it is key to enhancing quality of life. Adopting strategies to manage symptoms, adapting to changes, and maintaining physical and emotional well-being empower individuals to live as fully as possible despite the disease's complexities.

This blog is dedicated to providing comprehensive and compassionate guidance for individuals navigating the complexities of ALS. Through insights into medical management, therapy options, lifestyle adjustments, and support resources, the blog aims to be a supportive companion to offer hope and help on the journey with ALS.

Medical management

Navigating ALS necessitates a comprehensive medical management plan tailored to each individual’s specific needs and disease progression. While there is no cure for ALS, there are treatments and medications that help manage symptoms, improve quality of life, and potentially slow the progression of the disease.

Current medical treatments and medications

Riluzole 

This medication is one of the cornerstones in the treatment of ALS. It's believed to reduce damage to motor neurons by decreasing levels of a neurotransmitter called glutamate. While it's not a cure, Riluzole has been shown to extend survival by several months. This is particularly true in the bulbar form of ALS, which affects speaking and swallowing.

Edaravone 

Edaravone is an antioxidant that helps to slow down the worsening of ALS. It works by relieving oxidative stress, which is thought to be one of the factors contributing to nerve damage in ALS. Treatment with Edaravone involves regular intravenous infusions, and its effectiveness may vary from person to person.

Symptom-targeted medications 

Various other medications are used to manage specific symptoms of ALS. These include muscle relaxants for spasticity, medications to help manage excessive salivation or phlegm, and drugs to treat depression and emotional lability.

Regular medical check-ups and monitoring

Staying in regular contact with a healthcare team is vital for anyone living with ALS. These check-ups are crucial in managing the evolving nature of the disease.

Regular assessments allow for treatment plan adjustments based on the disease's current state and the individual's response to treatments. Regular monitoring helps identify and manage potential complications, such as respiratory issues or nutritional deficits.

ALS affects multiple body systems, so a team approach is often best. This team might include neurologists, physical therapists, occupational therapists, speech therapists, and nutritionists, all working together to address the various aspects of ALS.

Physical therapy and exercise

Incorporating physical therapy and exercise into managing ALS helps maintain mobility and overall function. While the nature of ALS presents unique challenges, engaging in carefully planned physical activities offers many benefits:

Tailored exercise programs 

Physical therapists specialize in creating personalized exercise routines that cater to the individual needs and abilities of those with ALS. These programs focus on maintaining as much mobility and muscle function as possible, which enhances independence and quality of life.

Prevention of complications 

Regular movement helps prevent complications associated with immobility, such as joint stiffness and muscle contractures. Physical therapy introduces gentle stretching and range-of-motion exercises to keep joints flexible and muscles as lengthened and healthy as possible.

Enhanced respiratory function 

As ALS progresses, respiratory muscles often weaken. Physical therapists teach breathing exercises that help maintain lung capacity and ensure efficient breathing. 

Safe exercise tips tailored for individuals with ALS

  • Start slowly: If you're new to exercise or have recently experienced changes in your abilities, it's best to start slowly. Gradual progression helps prevent overexertion and muscle strain, which is usually counterproductive.

  • Listen to your body: Each day with ALS is different. Pay close attention to how you feel and adjust your activities accordingly. On days when you feel stronger, you might engage in more activity. However,  it's equally important to rest and conserve energy when needed.

  • Incorporate rest: Balance exercise with adequate rest. Overworking weak muscles leads to increased weakness and fatigue. Plan for rest periods between exercises, and don't hesitate to take a day off if you feel overly tired.

  • Stay cool: Overheating exacerbates symptoms and leads to fatigue more quickly. Try to exercise in a cool environment and stay hydrated. If you feel yourself getting too warm, take a break and cool down.

  • Seek professional guidance: Before starting any new exercise regimen, consult a physical therapist or healthcare provider. They are able to recommend the most appropriate and safe exercises and help you understand your unique limits and capabilities.

Speech and occupational therapy

For individuals with ALS, it is important to maintain communication abilities and manage daily activities throughout the progression of the disease. Speech and occupational therapies offer a range of strategies and tools to address these challenges. Each approach helps individuals adapt to changes in their abilities.

Strategies for maintaining communication abilities

Speech therapy

As ALS progresses, it affects the muscles used for speaking. Speech therapists are skilled in techniques for maintaining clarity of speech for as long as possible. They provide exercises to strengthen the muscles involved in speech and teach strategies to communicate effectively, even as speaking becomes more challenging.

Augmentative and Alternative Communication (AAC) 

When speech becomes too difficult, AAC devices are a lifeline. These range from simple picture boards to advanced computer systems that can operate with eye movements or other body parts that retain movement. Speech therapists guide individuals in choosing and using the most suitable AAC methods.

Voice banking 

For those in the early stages of ALS, voice banking is an option where the individual's speech is recorded and then synthesized to create a custom voice. This personalized voice is used in speech-generating devices for a more personal means of communication.

Adaptive tools and techniques for daily activities

Occupational therapists assess the individual's needs and provide adaptive tools and strategies for everyday tasks like dressing, eating, and personal care. As each person’s journey with ALS is unique, occupational therapists customize solutions. This might involve special utensils for eating, modified keyboards for typing, or devices to help turn pages in a book.

Occupational therapists also advise on home modifications to enhance safety and accessibility. This might include installing grab bars in the bathroom, using a wheelchair-accessible shower, or rearranging furniture for easier mobility.

Nutritional support

Proper nutrition impacts overall health, energy levels, and the body's ability to cope with ALS. As the disease progresses, swallowing difficulties may arise, making nutritional intake challenging. Understanding the importance of a balanced diet and how to adapt to these changes.

While ALS inevitably leads to muscle wasting, a well-balanced diet can help slow this process down. Adequate protein intake is crucial for preserving muscle mass as much as possible. Individuals with ALS often have increased energy needs. A diet providing sufficient calories helps maintain weight and energy levels, supporting overall well-being.

A balanced diet supports immune function, skin integrity, and cardiovascular health, all of which are crucial for living with ALS.

Tips for dealing with swallowing difficulties

  • Texture modifications: As swallowing becomes more difficult, modifying the texture of foods can help. Soft or pureed foods are often easier to swallow. Thickening liquids can also prevent choking and make swallowing safer and more comfortable.

  • Small, frequent meals: Eating smaller amounts more frequently throughout the day can make it easier to consume enough calories and nutrients without becoming fatigued.

  • Sitting upright: Eating in an upright position and taking time with meals can reduce the risk of choking and make eating more enjoyable.

Nutritional supplementation

When getting adequate nutrition from food alone becomes challenging, supplements and nutritional shakes can be helpful. They provide essential vitamins, minerals, and calories in an easily consumable form.

In some cases, a feeding tube may be recommended to ensure proper nutritional intake. This is a vital tool for maintaining weight and health when eating by mouth is no longer viable.

Working with dietitians and healthcare professionals to tailor a nutritional plan provides the necessary support to address the unique challenges faced by individuals with ALS. This collaborative approach ensures that dietary needs are met sensitively and effectively as the condition progresses.

Emotional and psychological support

Beyond the physical symptoms, ALS is a deeply emotional and psychological journey. It is essential to address these issues for a holistic approach to care. Open communication, mindfulness, and maintaining hobbies all enhance emotional well-being. Realistic goal setting is another approach that boosts morale. 

Manage stress and connect with others on a similar path by making use of professional counseling, support groups, and family therapy. Utilizing online forums and social media are other avenues to find comfort and camaraderie from home. 

Together, these strategies and resources form a comprehensive support system that empowers individuals and families to find strength and resilience while navigating ALS.

Join the Saints to Sinners Bike Relay

Navigating life with ALS is undeniably challenging, but within these challenges lies the opportunity for resilience, community connection, and advocacy. Engaging with the ALS community, in particular, provides immense support and a sense of belonging.

One remarkable opportunity to connect with this community and advocate for ALS awareness and research is through events like the Saints to Sinners Bike Relay. This inspiring event fosters a spirit of camaraderie and support among participants and serves as a powerful platform to raise awareness and funds for those affected by ALS. 

Mark your calendar to participate in and support the annual Saints to Sinners Bike Relay. Together, we can navigate the challenges of ALS, support one another, and ride toward a future of hope and progress.


12 views0 comments

Comments


bottom of page