Living at Home with Parkinson's and ALS

"As the child of a mother who fights fiercely ALS, I deeply know the value of the services provided by Living Well: excellent medical support, home care, transportation services, and assistance to change the layout of the house to make it accessible to her wheelchair and different mobility devices, my mother uses. Living Well really helps her to living with ALS while enjoying the familiar surroundings of her home."
— Kathy, Novato, CA

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Parkinsons
5 Minutes to Understanding Parkinson's Disease

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ALS (Lou Gehrig's Disease)

Video Information Center: ALS - Lou Gehrig's Disease
Video Information Center: ALS - Lou Gehrig's Disease
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A True Individualized and Comprehensive Model of Care At Home for People with Parkinson's, ALS and other Motor Disorders

Parkinsons ALS Care at Home

The Facts

According to the National Parkinson's Foundation, in the United States, 50,000-60,000 new cases of Parkinson's disease (PD) are diagnosed each year, adding to the one million people who currently have Parkinson's Disease. In fact, it is estimated that four to six million people around the world suffer from the condition. There is hope, however, as scientists work towards a cure and make progress in identifying the best treatment options for patients. Parkinson's disease usually develops after age 60, but 15% of cases are diagnosed in people under the age of 40.

According to the ALS Association, only 5 to 10% of cases of ALS in the U.S. are genetic; the cause of 90-95% of cases is unknown. ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database are Caucasian. Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties.

What is Parkinson’s Disease? A general definition

Parkinson's disease (PD)

is a progressive disorder of the brain and central nervous system that causes a variety of movement problems (such as shaking, muscle stiffness, and difficulty walking).

WATCH PARKINSON'S 101 VIDEO

Movement and coordination in your body are controlled in part by a chemical in your brain called dopamine. In Parkinson's disease, dopamine-producing nerve cells are damaged, gradually reducing dopamine levels in the parts of the brain thought to control movement. Without dopamine, the brain doesn't send signals to the muscles so that they can function properly.

LEARN MORE ABOUT PD SYMPTOMS

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What is Amyotrophic lateral sclerosis (ALS)? A general definition

Amyotrophic lateral sclerosis, or ALS,

is a degenerative disease affecting nerve cells in the brain and spinal cord that control voluntary muscle movement. ALS is also known as Lou Gehrig's disease.

With ALS, motor neurons (nerve cells) degenerate or die and the brain loses its ability to initiate and control muscle movement. In the early stages, patients experience muscle weakening particularly in the arms and legs, speech, swallowing or breathing. The condition slowly worsens. In the later stages of the disease, patients may become totally paralyzed. When the muscles in the chest area stop working, it becomes hard or impossible to breathe on one's own.

The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting, and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years.

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Early Detection and Treatment are the keys

PD:

While a cure for Parkinson's disease (PD) and Amyotrophic lateral sclerosis (ALS) has not yet been found, thanks to research conducted in recent decades, many treatments are available to help manage the condition. And because PD and ALS are progressive diseases, it's important to begin treatment as soon as possible. Working together, you and your medical team will select the best treatment approach for PD based on your symptoms and needs.

ALS:

Although there is no known cure for ALS, treatment with the FDA-approved drug riluzole may slow the disease progression and prolong life. Learn more about signs, symptoms, and treatment of ALS.

Care at Home

"Parkinson’s is a part of my life, but it is not life itself."
— David, 56, three years after diagnosis

The Parkinson's Disease Foundation states "...While your journey with Parkinson's is different from anyone else's, from age of onset, to the symptoms you will experience, to your reactions to medications, there are common strategies you can take to live well with PD..."

Living Well is interested in helping individuals with PD or ALS to continue rewarding lives. Living Well President, Dr. Doris Bersing, says "...Remember that these diseases are a label but they are not your loved ones. They experience that illness but they are not the illness. It is very important to focus on the uniqueness and individuality of each person and use the right interventions to help them express themselves and lead a fulfilling inner life. Let Living Well help you and your loved one to understand and live through the process."

Learn more about strategies to live with PD

Learn more about management tools for PD

In both diseases excellent care at home and monitoring of medical signs and symptoms are capital. Living Well C.E.O Dr. Tessa ten Tusscher states "We believe that through accurate diagnosis of people's physical and cognitive strengths and vulnerabilities, we can develop support and programming that appropriately stimulates, offers joy, and helps people to remain safe in their own homes and within their communities. We are not interested in what the disease is like but how the person is like, what type of life he/she has before being diagnosed and how Living Well can help to unfold wellness and make their lives meaningful..."

PD Resources

Support groups and resources for individuals with PD

More Resources on Parkinson's Disease

Resources and Management Tools for People Living with Parkinson's Disease

Davis Phinney Foundation
The Davis Phinney Foundation helps people with Parkinson's disease to live well today.

Parkinson's Women Support
Offering moral support, encouragement, camaraderie for women with PD.

ALS Resources

Support groups and resources for individuals with ALS

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California Association for Health Services at Home (CAHSAH)Home Care Pulse