A True Individualized and Comprehensive Model of Care At Home for People with Parkinson's, ALS and other Motor Disorders
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, in about 10% of cases, ALS is caused by a genetic defect. 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).
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.
What is Amyotrophic lateral sclerosis (ALS)? A general definition
Amyotrophic lateral sclerosis, or ALS,is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. ALS is also known as Lou Gehrig's disease. It is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. 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.
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. The first drug treatment for the disease is a medicine called riluzole, which slows the disease progression and prolongs 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."
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..."
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.