What is ALS/ Amyotrophic lateral sclerosis or motor neuron disease. And why is ALS ice bucket challenge to be taken seriously? I was finding all the ice bucket challenge going around a little more towards fun side, but thats how we spread it. Life teaches you the most painful amid the most humorous. And because of this activity going around i could gather courage and put myself to write down for this cause. My own experiences with ALS have been life trembling and extremely bitter. As horrifying and painful it is, ALS or motor neuron disease is a fatal, non curable and extremely malignant disease. It causes the death of the neurons which control voluntary muscles in our body. And the recent ALS ice-bucket challenge aims to bring worthy donations for enabling research, helping the crippled and the family also providing rehabilitation to people suffering from the ailment.
What is ALS Association:
The ALS association which gets the donation amount is working tirelessly for helping the grieving patient and their helpless families, for doing research on any-every available form they can, under the circumstantial blocks . This association is bringing every nation at a global platform to share information and practices and together find out ways and means to research the yet unknown aspects of this dreadful disease. It may be the most severe and painful of the ailments known so far. Because of the atrocities it brings not only to the patient suffering from it but to the care-givers and family who are mentally crippled and made to see their beloved dying every second, every moment and every day.
And i think of it as more than just a cause or word to spread. It is a situation which not only make the patient suffer but the entire household undergoes the excruciating pain of visualizing the ailing person to death and then actually seeing the traumatic degeneration until demise. Life taught me in the harshest of harsh ways when i saw it 26 years back. When no one was even aware of the name, it crippled not only my mother but our entire family. We were of the unfortunate 2 in 100000 who gets this disease every year. Of less than the 10% who survive more than 10 years with the ailment, my mother’s will-power made her so strong that she could fight it for 13 years. Despite the 17 years, this disease has been the same in terms of symptoms, treatments and end of life.
What are the causes of ALS:
1- Nearly 90-95% of the cases have no considerable diagnosis highlighting the cause. Around 5-10% have hereditary reasons, passing from parents. But again its challenged for there aren’t any specific factors adding up to it.
2- Researches and facts suggest it is linked with head injury too. 4 of NFL players were diagnosed with ALS during the same time. Also US military veterans have been diagnosed with the same. Which is largely attributed to head injuries.
3- Also environmental and lifestyle factors are researched for their causal impacts, but not concrete evidence is suggestive yet
Symptoms of ALS or Lou Gehrig’s disease or MND:
Each person has a different early symptom than the other. Some begin with limbs and some have slurring words. But in all cases it is never correctly diagnosed for ALS in the first place. Eventually everyone ailing from ALS follow the same muscular destruction and death. They have difficulty in speaking, swallowing and breathing; eventually they die. Some symptoms are:
1- Stumbling: As i remember, this was the from the first few signs we came across and took it as poor health and fitness.
2- Slowing functions of limbs: Fingers start getting stiff and motor skills lose with loss of strength to hold or balance objects in hands.
3- Slurred speech and eventually no speech at all
4- Problems in eating and swallowing
5- Worsening posture and falling too often
6- Hard time holding your neck and head upright so within a few months cervical collar becomes critical
7- It begins with a few parts and spreads all over the body.
8- Muscles become so weak that holding oneself up, is impossible.
9- The body has sensations for touch and pain, but the control over any muscle is lost
10- Slow the body degenerates and at the end it affects the lungs and respiratory failure causes death.
The rather understanding explanation for progression of the disease from what i saw and grew up with, it is when the muscles of our body stop functioning or rather die out. The motor functions of our body are controlled by our brain, which include moving parts of our body, walking, eating, swallowing, talking. The neurons or the nerve cell in our brain use muscle to transmit this control. There are hundreds of thousands neurons in our brain and in ALS/MND some part of it stops functioning causing the voluntary functions to stop completely like moving hands, legs, eating, swallowing, speaking and at last breathing also stops, eventually causing death. The lower part of the body from the neck till toe gets completely dysfunctional but not paralyzed as sense of touch and pain stays on. Memory largely stays intact and what i remember of my mother, that she would remember even the long forgotten very well till her last breath.
The disease progresses from these early symptoms and to more traumatic and deteriorating ailment. Generally it affects from ages 50 and above. But in my case i saw it affecting under 40. The degeneration is slower at this age as compared to what it is at age 60 or above. Difficulty in eating and swallowing makes the risk of choking critical for this stage. Most people with ALS die of respiratory failure or pneumonia eventually.
No test can provide a definite diagnosis of ALS. And it is often confused with more varied ailments. Physicians usually have to undertake a series of neurological tests and family history evaluations to reach any conclusion. It is more about eliminating the causes of other diseases than about finding exact symptoms of ALS.
Differential diagnosis is also done including
1- EMG or electromyography which detects electrical activity in muscles
2- NCV or nerve conduction velocity
3- MRI or magnetic resonance imaging
Managing ALS as there is no cure and no treatment; What ALS association is doing:
Only aspect that underlies here is to relieve painful symptoms and increase life expectancy. As there is nothing else which can be done. Supportive care is aimed in making the patient as mobile and comfortable as possible.
Medicines like Riluzole is believed to moderately improve the survival by 2-3 months. But it does not cure any damages done to motor neurons already. Also Edaravone was used for treatment in Japan in 2015. Some more medicines used to relieve the pain to some extent are aimed at reducing fatigue, cramps, reduce saliva and phlegm. Also, some sedatives and anti-depressants are used by people suffering from ALS. Breathing support and some physical therapy are also used for rehabilitation of patients. Nutrition becomes a challenge and eventually feeding tube is set up for the regular food. End of life care is aimed at providing medical, emotional and financial support to family of the MND aggrieved individual.
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ALS Ice Bucket Challenge:
In August of 2014 the ALS ice-bucket challenge became viral online which was established to bring awareness of this fatal muscular disease. The entire idea was to garner charity and awareness for the ailment. Anyone who was nominated had to either dump ice filled bucket of water on their head and donate $10 or if refusing to participate then they must donate $100 to ALS Association. Also, some popular celebrities and world business tycoons participated in the cause of promoting charity and awareness.
But the need for spreading a word on the disease was lost in most cases. Maybe because of my unfortunate experience i felt more information was required for every challenge video-graphed to share.
For I saw it when i hardly understood the difference between life and death, illness and wellness, i could hear elders around me speaking of death too often. But during those times, its awareness among the common people rather even in the Neurologists around was absent. This recent activity has brought ALS and specially physicist Stephen Hawking on the cover page of our digital assistant; the Facebook and Twitter. Stephen Hawking is suffering from MND from past 54 years and at diagnosis, at age 21, he was given survival chances for 2-3 years.
By writing the above on What Is ALS And Why ALS Ice Bucket Challenge, i meant to bring out what is ALS or MND, how a family with ALS/MND patient struggles and how this ice-bucket challenge aims at bringing the world together to fight this fatal illness. I wanted to bridge the gap between the many people not speaking rather not knowing about the disease despite completing the challenge and the few people who knew it and donated but couldn’t take up the challenge to speak out their minds.
[Subjective information credit: here]
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