Unless you haven’t logged onto any social media site in the last week (highly impossible), you’d have seen videos of your beloved celebrities and friends accepting the ALS Ice Bucket Challenge and basically throwing a bucket of ice and water over their head. While you laugh at the incredulity of their actions, you’re probably also wondering what the heck is ALS.
ALS is a rare disease. So rare that barely anyone has even heard of it, until people started throwing ice on themselves, that is. The scary thing is, it affects people of all races and ethnic backgrounds. So although rare, chances are it could happen to you, or someone close to you.
What Exactly is ALS?
Amyotrophic lateral sclerosis, more commonly known as ALS, is a progressive neuro-degenerative disease that affects nerve cells in your brain and spinal cord.
Your brain controls your muscles through motor neurons. These motor neurons connects the brain to the spinal cord and finally to your muscles. However, ALS causes these motor neurons to degenerate and die, so you’re unable to control your muscles anymore.
Victims of ALS eventually find themselves unable to move their arms, legs, and body. As the disease progresses, you’ll find yourself totally paralysed. When muscles in your diaphragm and chest wall fail, you’ll also lose the ability to breathe without support.
Perhaps one of the most notable people with ALS is Stephen Hawking, a famous theoretical physicist and cosmologist who charted the nature of space and time and also published several significant books including best-seller “A Brief History of Time”.
What Causes ALS?
The definitive causes of ALS is currently unknown, but about 5-10% of cases are inherited. Earlier in 1993, scientists discovered that an association between a mutated gene and cases of familial ALS, although it’s still unclear how it works exactly.
Research on ALS is still ongoing and could uncover more about ALS in the future.
What are the Symptoms of ALS?
Early symptoms of ALS are often go unnoticed as they are very subtle. These include:
- Muscle twitches
- Tight and stiff muscles
- Muscle weakness affecting an arm or leg
- Slurred / nasal speech
- Difficulty chewing / swallowing
Many people first notice difficulties in doing simple things that require dexterity like:
- Buttoning a shirt
- Tying shoelaces
- Turning a key in a lock
If muscles in the legs are affected, you’ll notice yourself:
- Falling more often
- Tripping more often
- Stumbling more often
Who’s at Risk for ALS?
The risk factors for ALS include:
Age: ALS most commonly occurs in people between the ages of 40 and 60.
Heredity: 5-10% of people with ALS inherited the disease. Children of people with familial ALS have a 50/50 chance of developing the disease.
Sex: Slightly more men than women develop ALS before age 65, but the difference disappears after age 70.
Studies examining environmental factors which could be affecting the chances of someone getting ALS are ongoing, and these include smoking and lead exposure.
How Do You Diagnose ALS?
ALS isn’t the simplest disease to diagnose. Currently, there’s no one specific ALS test and doctors rely on a series of diagnostic tests to rule out other diseases that share the same symptoms.
According to the ALS Association, a comprehensive diagnostic workout includes most or all of the following procedures:
- electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV)
- blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24-hour urine collection for heavy metals
- spinal tap
- x-rays, including magnetic resonance imaging (MRI)
- myelogram of cervical spine
- muscle and/or nerve biopsy
- thorough neurological examination
How is ALS Treated?
There’s currently no cure for ALS. However, there are some treatment options available to slow the disease as well as relieve symptoms and improve quality of life. These include:
1. Riluzole (Drug treatment)
This is the first drug treatment approved for ALS and is believed to reduce damage to motor neurons by decreasing the release of glutamate. Clinical trials showed that this drug prolongs survival by several months.
2. Other drugs to relieve symptoms
Drugs can be prescribed to help with the symptoms of ALS such as fatigue, muscle cramps, spasticity, excess saliva and phlegm. Some patients may also require anti-depressants.
3. Physical therapy
To help strengthen unaffected muscles, fight fatigue and depression and improve cardiovascular health, low impact aerobic exercises like walking, swimming, and stationary cycling can help. Usually, a physical therapist will help with an exercise plan that’ll work for the patient.
4. Speech therapy
Some people suffering from ALS might have difficulty speaking so a speech therapist could help with techniques for getting understood. As the disease progresses, the therapist will help to develop communication systems for ALS patients.
What Should I Do If I Think I Have ALS?
Speak to your doctor and tell him / her of your suspicions. ALS is not a death sentence and there are many potential treatments and therapies currently being researched. The medical community is optimistic that this will lead to more effective treatments for ALS in the future.
Learn More or Donate to Fund More Research
What does the ALS Ice Bucket Challenge Do for ALS?
While some might critique it a pretty pointless move, the ALS Ice Bucket Challenge has actually helped raise a whopping US$70.2 million thus far, compared to the measly $1.9 million in the same time period last year. And more is still to come. This money will help fund care services to assist people with ALS as well as global research to find a cure.
For a disease as little known as ALS, the awareness and funding brought about by the challenge is greatly embraced by communities affected by ALS. Close relatives and those suffering from ALS themselves are doing the Ice Bucket Challenge to support the cause.
Perhaps this guy who’s been recently diagnosed with ALS says it best:
“I promise your news feed will go back to cat videos and Let it Go covers, but right now the ALS community has the main spotlight and for once in my entire life, I’ve seen it in the forefront.”
Watch his heartfelt ice bucket challenge here:
We’ve donated to www.alsa.org and challenge you to the #ALSIceBucketChallenge. If you accept the challenge, all you need to do is dunk a bucket of iced water over yourself and donate $10 to www.alsa.org or an ALS charity of your choice. If you choose not to, donate $100 instead. Tag @HealthWorks.my to show us if you’ve done it!
6 thoughts on “What is ALS and Why are So Many People Doing the Ice Bucket Challenge?”
so what is the ” ice bucket challenge ” does it effect anything or what is the purpose of it ?
Basically, the ALS Ice Bucket Challenge came about as a means to raise funds and awareness for ALS research and the community affected by ALS. How it works is that if you’ve been challenged, you’ll have two options: (i) post a video of you dunking a bucket of iced water over your head, nominate 3 more people to do it, and donate $10 to alsa.org or an ALS charity of your choice, (ii) decline the challenge and donate $100 instead.
The movement has raised US$31.5 million so far (compared to US$1.9 million in the same time period last year) and has also greatly raised the awareness of people towards ALS, a very little-known disease. This money will go to fund support for people with ALS as well as research for a cure.
So, are you going to do it? 🙂 We challenge you Saria!
May I know do Malaysia have ALS Association? Do they have website? How to donate for them?
Hey Chin Hui,
Unfortunately the disease is so rare in Malaysia that there is no ALS Association here. For research purposes, we believe that donating to alsa.org would help our fellow Malaysians just as much in finding a cure or treatment. Oh, in case you are interested, we came across this inspiring story of a Malaysian currently living with ALS: http://www.thestar.com.my/News/Nation/2014/08/25/Beyond-the-ice-bucket-challenge-Task-raises-more-awareness-on-ALS-disease/
“Unfortunately” the disease is so rare in Malaysia……..; I wish you meant FORTUNATELY…!
Oh dear, we hope you did not take it the wrong way. We meant that unfortunately there’s no ALS association here due to the rarity of the disease in Malaysia. Fortunately for us, yes. Phrasing issues. Sorry!