Living With Chronic Disease
- Robert Flack, 85, known for the hit song ‘Killing Me Softly’ has lost her voice and she is no longer able to sing, after being diagnosed with Lou Gehrig’s disease.
- Amyotrophic lateral sclerosis, or ALS, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control, according to the Mayo Clinic.
- ALS is often referred to as Lou Gehrig’s disease, after the baseball player who was diagnosed with it.
- Coping with the mental health aspects of a devastating progressive disease is extremely difficult. Using therapy and patient groups to find a sense of acceptance can help provide a bit of peace, say experts.
- Patients sometimes say that "People that are strong cry, it's the weak ones who try to hold it in."
Amyotrophic lateral sclerosis, or ALS, is often called Lou Gehrig’s disease and is “a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control,” according to the Mayo Clinic.
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The announcement likely comes before Flack is set to make appearances for a new children’s book called, The Green Piano: How Little Me Found Music and a documentary set to air on PBS next year.
What Is Lou Gehrig’s Disease?
According to the Mayo Clinic, ALS symptoms start with muscle twitching and weakness in the limbs, or slurred speech.
“Eventually, ALS affects control of your muscles needed to move, speak, eat, and breathe. There is no cure for this fatal disease,” it said.
Signs and Symptoms
The Mayo Clinic says symptoms vary from person to person, depending on which neurons are affected, but generally starts with muscle weakness that continually gets worse.
Some signs and symptoms listed by the Mayo Clinic are:
- Difficulty walking or doing normal daily activities
- Tripping and falling
- Weakness in your legs, feet or ankles
- Hand weakness or clumsiness
- Slurred speech or trouble swallowing
- Muscle cramps and twitching in your arms, shoulders and tongue
- Inappropriate crying, laughing or yawning
- Cognitive and behavioral changes
The Mayo Clinic says ALS affects the motor neurons in a person, which control your voluntary muscle movement such as walking and talking. The disease causes the motor neurons to gradually deteriorate, and then die.
“ALS is inherited in 5% to 10% of people. For the rest, the cause isn’t known,” it said. “Researchers continue to study possible causes of ALS. Most theories center on a complex interaction between genetic and environmental factors.”
Accepting Your Diagnosis
Dr. William Breitbart, the chair of the Department of Psychology and Behavioral Sciences at Memorial Sloan Kettering Cancer Center, says that learning to embrace that uncertainty is a part of living … not just for those fighting cancer, but for everyone.
"What the task becomes is having the courage to live in the face of uncertainty, realizing that you cannot necessarily control the uncertainty in life … the suffering that occurs, challenges both good and bad," Dr. Breitbart says. "You may not be able to control those but you have control over how you choose to respond."
Learn to Accept Yourself A Huge Part of Living With Cancer
Navigating A Diagnosis
"People that are strong cry, it's the weak ones who try to hold it in," says Evelyn Reyes-Beato, a colon cancer survivor. In this episode of SurvivorNetTV's series, "SN & You," survivors share how they handle their mental health and cope with their emotions after undergoing cancer treatment.
SN & You Presents Mental Health: Coping With Emotions
You'll hear several women, all of whom are cancer survivors, talk about their experiences dealing with cancer and navigating life after a diagnosis. Many of these women get very emotional about what they have gone through. It just goes to show that crying and being open with your emotions is part of the healing process.
Contributing: SurvivorNet Staff
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