Condition Overview 

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a degenerative motor neuron disease.  The disease causes the nerve cells of your brain, brainstem, and spinal cord to degenerate or die. The degeneration of these cells reduces and ultimately eliminates the ability of your brain to communicate and control the muscles throughout your body.  As your muscles are used less frequently they begin atrophy.  

ALS will not affect your five senses:  sight, hearing, taste, touch, and smell.  You will continue to think clearly. However, in some cases, ALS can cause depression and apathy.

Amyotrophic lateral sclerosis is progressive, with early symptoms often overlooked or not recognized by physicians.  ALS usually affects one part of your body first. You may have noticed difficulty moving an arm, or had difficulty in speaking.  The disease advances to the rest of your body as your motor neurons degenerate. Common symptoms include:

• Muscular weakness

• Trouble swallowing

• Slurred speech

• Stiff or tight muscles

• Exaggerated reflexes

The rate of progression of amyotrophic lateral sclerosis varies.  As the condition advances, general strength decreases, and your need for assistance with daily activities increases.  The risk of anxiety and depression increases as the disease advances.

There is no cure for ALS.  However, there are many ways to improve your quality of life and combat the symptoms.  In addition to medications to alleviate pain and fatigue, rehabilitation services can help maintain function.  You can choose to manage the impact of the disease.

Common Experiences and Challenges

“Common” is a poor descriptor for shared difficulties of ALS patients.  One out of every ten thousand people in the United States is diagnosed with Lou Gehrig’s disease.  This disease progresses at a different pace across this small population. Each case is truly unique.  There are, however, some shared difficulties as the disease progresses:

Fatigue – Muscle spasms and cramps are exhausting.  You feel overwhelmed with fatigue.

Eating – You have difficulty swallowing.  You choke on everything, including your saliva.  With each month, there are fewer friends and associates you feel comfortable eating with.  As choking becomes a significant problem, you will debate and may eventually opt for a feeding tube.

Communicating – You are losing the ability to communicate.  In early stages, slurred speech is frustrating, but in later stages, you would give anything to be able to speak, even slurred, with your family and friends.  In the last stages, you learn to communicate with your eyes and eyelids.

Socializing – It is difficult to navigate “out on the town,” even with substantial help.  You can no longer visit friends and family without advance planning. While you appreciate and enjoy the company of health professionals, you become depressed to realize you interact more frequently with them and less frequently with friends and family with each passing month.

Helping – You are a good person.  Throughout your life you have tried to be selfless and supportive.  You see the sacrifices those close to you are making for you, and your ability to repay them is fleeting.  Your desire to give back can be sharp and emotionally draining.  

These frustrations increase as the disease advances.  Having ALS can be emotionally and physically exhausting.  The early stages are difficult and confusing. The later stages are isolating and frustrating, and the symptoms become all-consuming for your entire family.

Being independent

You cannot slow the progression of this disease, but imagine if you could reduce its impact on you and your family.  Just think; what if you could remain in your home longer, eat with less help, and improve interaction with friends.  

How empowering would it feel if you could continue to navigate your home without help?  How powerful will you feel as you keep dedicated to exercising your body? How happy will you be when you describe to your support group friends what you do to be more self-sufficient?

You have made the decision to reduce the impact of this disease on your life.  You will be proud of your modified home, exercised body, sharp mind, and your independence.

How we can help

You can choose to live a more full life with Amyotropic lateral sclerosis.  We can help. We know which resources will meet your needs. You will learn to more efficiently and safely move about your daily life.  

Working with you in the privacy and safety of your home, we determine the best action plan for your condition, environment, and budget.

Our independent living specialists are:

• Qualified – Our independent living specialists are licensed and registered occupational therapists with advanced training to help you continue to live in the comfort of your home.  Occupational therapists are healthcare professionals specifically trained to help people be as independent as possible.  They are trained in anatomy, neurology, psychology, and development. This training enables occupational therapists to create an individualized plan of action to improve your independence and your life.  Occupational therapists are the ONLY professionals recognized by the Centers for Disease Control (CDC) to make recommendations for home modifications or remodeling for persons with disabilities. We work with only the best occupational therapists in the industry.

• Knowledgeable – Our independent living specialists continually train on new and emerging products and services to help individuals with Parkinson’s disease.  In fact, our staff of specialists includes licensed instructors for continuing education (CEU) classes taken by nurses, social workers, physical therapists, and occupational therapists across the country.  We teach the other medical providers you currently see.

• Trustworthy – Our independent living specialists are experienced professionals with exceptional knowledge and dedication.  We will be honest with you about what you can expect as your condition matures. Because we work for you, we will always champion your needs with technology companies, remodelers, and other modification providers.

Testimonial

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Additional ALS Resources

• Rebuild Independence Blog  – You will find information about new techniques, products, services, and tips to guide you.  We generally post at least one update each week.

• Les Turner Amyotrophic Lateral Sclerosis Foundation – This foundation is an independent non-profit devoted solely to the treatement and elimination of ALS.  You will find summaries of ongoing research, events, and opportunities to get involved.

• National Institute of Neurological Disorders and Stroke – You will find an overview of the condition, links to other non-profit and action groups, and NINDS publications and research findings.

• The ALS Association – You can connect with resources and other families working to manage the impact of ALS.