Early detection can help with ALS
Lou Gehrig’s disease tends to affect older adults more often, and is notoriously difficult to diagnose – but knowing when to talk to your doctor can help
There is no cure yet for amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease – but early detection can help to prolong survival and quality of life. Many treatment methods have been developed to help control symptoms, prevent unnecessary complications and make living with the disease easier.
But while getting a timely and accurate diagnosis is important, it’s not necessarily easy.
The progressive neuromuscular disorder gradually affects the nerve cells in the brain and spinal cord, resulting in muscle weakness and eventually loss of motor function. The sequence of emerging symptoms and their rates of progression can look very different in different people. And there are other diseases that can appear much like ALS.
Researchers at the UC Davis Multidisciplinary ALS Clinic – an ALS Association Certified Center of Excellence – continually focus on developing better diagnostic strategies and treatments for patients living with the disorder. But they also say that for higher-risk groups, understanding the signs and symptoms can help with early detection and intervention.
Some facts you should know from the clinic’s Co-Director Dr. Nanette Joyce:
Anyone can develop ALS, but older adults and other select groups have a higher risk
While the cause of ALS is unknown, 20,000 Americans still battle with the disease every day. Approximately 6,000 people in the U.S. are diagnosed with the neuromuscular disorder each year. Of those cases, 90 percent are categorized as predominately sporadic, leaving the disease to occur at random. The other five to 10 percent of cases are genetically inherited.
Generally the disorder creates health risks for everyone, but the disease can be more prevalent for members of certain groups:
- Men, who are affected 20 percent more often than women
- Adults age 50 and above, but some cases have been reported in earlier stages of life
- Caucasians and non-Hispanics
- Professional athletes
- Military veterans
For reasons still unknown, ALS impacts military veterans twice as often as anyone else. Several research studies have investigated whether the increased risk could include exposures to lead, pesticides, and other environmental toxins.
- Stephen Hawking, theoretical physicist and cosmologist
- Baseball greats Lou Gehrig and Jim "Catfish" Hunter
- Football great Dwight Clark of the 49ers
- Musicians Lead Belly (Huddie Ledbetter) and Charles Mingus
- U.S. Army General Maxwell Taylor
- Actor David Niven
- "Sesame Street" creator Jon Stone
Symptoms are generally painless, but vary over time
ALS has a gradual onset and in the beginning stages symptoms might not be clearly noticeable, but muscle weakness eventually becomes undeniable over time. Some may experience early symptoms of tripping and increased clumsiness, muscle stiffness or abnormal fatigue in the arms and legs, muscle twitches and cramps. In other cases some might develop slurred speech, problems with swallowing, speaking and difficulty breathing.
As ALS progresses over time, simple everyday tasks become impossible. Regardless of where the symptoms first appear, muscle weakness and atrophy spread to other parts of the body and are universally experienced.
If you begin to develop any of these early signs, talk to your doctor. The benefit of earlier diagnosis and seeking out care is imperative to preserving quality of life and prolonging independence and survival.
Early diagnosis is fundamental in the fight against ALS
Although ALS can’t be prevented; there are early intervention strategies that help prolong quality of life. Experimental therapies and clinical trials are also helping scientists make way for new and more effective treatments.
The early initiation of disease-modifying medications such as Riluzole and, the newly FDA-approved medication Radicava, can slow the progression of disease and maximize each drug’s benefits. Avoiding weight loss, which can increase the rate of progression of ALS, has been shown to improve quality of life. Early identification of respiratory abnormalities with subsequent initiation of non-invasive ventilatory support (BiPAP treatment) has been shown to prolong life longer than any ALS medication currently in use, and improves quality of life for patients with ALS.
Multidisciplinary ALS Care Centers are considered the gold standard for the provision of care for the patient with ALS. These clinics offer comprehensive care from a large team of allied professionals including physical and occupational therapists, speech therapists, dieticians and social workers who are expert in treating the unique problems characteristic of ALS. These clinics provide access to research, and for those patients interested in participating in a clinical trial, early diagnosis is imperative as most ALS clinical trials today target the early-in-disease patient population.
The Multidisciplinary ALS Clinic at UC Davis is also attended by representatives from patient advocacy groups such as the ALS and Muscular Dystrophy Associations, who augment clinical care by offering community patient-support services. This paradigm of care has been shown to improve health outcomes for patients with ALS and can augment the care received in smaller community health clinics.
At UC Davis, Dr. Nanette Joyce has been working to develop a stem cell therapy (not yet ready for clinical trial) for patients diagnosed with ALS. She is also part of a translational research team, the Neuromuscular Research Center, which is dedicated to bringing innovative therapies to clinic for patients diagnosed with neuromuscular disorders such as ALS.