ALSCAS 10TH ANNIVERSARY EVENT REGISTER NOW
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About Us
ALS Care and Support (ALSCAS) Foundation India is purely a group of, family of caregivers and patients which provide critical knowledge and support to fellow ALS families in India. Amyotrophic lateral sclerosis (ALS) is a rare progressive neurodegenerative disease. ALSCAS, set-up in 2015, it is a 24 x 7 assistance community, which has touched the lives of 750+ patients and their caregivers. Functioning more as a close family, it guides fellow PALS/CALS with each, and every aspect of the disease based on their own experiences and extensive research. Be it nutrition, feeding management, using BiPAP, home ICU management, creating awareness, advocacy and much more. All this with full empathy and compassion and without a penny of charge.
ALSCAS is a Non-Profit Organization (NPO), register under section 8 of companies act 2013.
ALSCAS is a Non-Profit Organization (NPO), register under section 8 of companies act 2013.
What is ALS?
ALS is one of the most worst neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected.
Amyotrophic lateral sclerosis (ALS, commonly called Lou Gehrig's Disease or Motor Neuron Disease(MND)) is a rare, progressive, fatal, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. Between 1 to 2 people per 100,000 develop ALS each year. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people can also develop the disease
ALS 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 become totally paralyzed.
Amyotrophic lateral sclerosis (ALS, commonly called Lou Gehrig's Disease or Motor Neuron Disease(MND)) is a rare, progressive, fatal, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. Between 1 to 2 people per 100,000 develop ALS each year. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people can also develop the disease
ALS 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 become totally paralyzed.
10 Years of ALSCAS Journey.
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Our Vision
To build a compassionate ALS Care and Support family; provide comprehensive knowledge and guidance for effective ALS life management; empower persons with ALS to live with dignity, create awareness and advocate for affordable treatment, research and cure.
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Our Mom's Story
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Our Mom was completely active during her lifetime, manages office, home and other stuff due to her untiring attitude. Always working all time, fit & fine (with just few age related problem like pain in knees and legs). All went perfectly normal till Jan 2008 and then she started experiencing some difficulty in body one after other. We got her checked with many doctors and at the end it came out to be this incurable disease (ALS: motor neuron disease). It was most devastating news till date where our life came to standstill. We consulted the best doctors in India, and also world over through internet, however there was NO CAUSE or CURE for this disease till date.
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Analytics
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👤👤👤
750+ Patient Connected
Since 2015 |
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Provided Critical ICU
Support to 200+ members |
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400K+ WhatsApp
Conversation about Challenges/Solution |
Join Our WhatsApp Group
Join our ALS Care & Support WhatsApp Group (established in 2015) — a community where patients and caregivers from across India share experiences, guidance, and daily support through every stage of ALS. Only PALS (Persons with ALS) and CALS (Caregivers of ALS patients) can join. Click the button below and fill out the form to become part of our group.
Join our ALS Care & Support WhatsApp Group (established in 2015) — a community where patients and caregivers from across India share experiences, guidance, and daily support through every stage of ALS. Only PALS (Persons with ALS) and CALS (Caregivers of ALS patients) can join. Click the button below and fill out the form to become part of our group.
Donate Us ❤️ |
At ALS Care & Support Foundation, our mission is to enhance the quality of life for individuals and families affected by Amyotrophic Lateral Sclerosis (ALS) through comprehensive support, provide essential support services, including access to medical equipment, therapy, and emotional support. Ensuring patients and their families have the resources they need to navigate this challenging journey. Your generous donations enable us to continue this vital work, bringing hope and tangible assistance to those battling ALS.
All donations are exempted under 80G. |
Check Out! What our Community Members Say
Meet the Co-Founders-
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“Our purpose in life is to support ALS Care and Support India and connect with scientists, doctors, researchers, and philanthropists across India to help get a cure for this fatal neurodegenerative disease.”
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Disclaimer:
This site is created for the purpose of spreading awareness about the disease management and its care in home conditions. We do not claim information cited in this website to be authorized medical procedure. These are our own experiences, self learnt practices from medicinal field, internet and continued improvisation by ourselves to reach at current stage of management. Information here can be referred and could be quite helpful for other families and caregivers whose loved ones are suffering from ALS.
Our Mom Story
Our Mom was completely active during her lifetime, manages office, home and other stuff due to her untiring attitude. Always working all time, fit & fine (with just few age related problem like pain in knees and legs). All went perfectly normal till Jan 2008 and then she started experiencing some difficulty in body one after other. We got her checked with many doctors and at the end it came out to be this incurable disease (ALS: motor neuron disease). It was most devastating news till date where our life came to standstill. We consulted the best doctors in India, and also world over through internet, however there was NO CAUSE or CURE for this disease till date.
And we knew (and mumma as well) as one of doctor told us during ALS diagnosis "that today is better then tomorrow for her". So live for today. During these last EIGHT years- we tried many options in first 2 years to find miracle for this incurable disease e.g. alternative therapies->. Homeopathy, Ayurvedic, Panchkarma oil massages, speech therapy, physiotherapy, medicines, Bijnor renowned Vaid medicines and many others. After trying all, still disease continued to progress its course effecting legs, arms, speech, swallowing abilities, difficulty in breathing and mom reached the stage of Ventilator in NOV 2010. We brought mom home on ventilator in DEC 2010, resisting every other person(doctors, nurses) in medical fraternity in treating hospital (also family and relatives) who said “ you can’t keep patient on Ventilator in home in INDIA ….”. Our mother wanted to come out of that ICU and reach back home. We took permission and continued to stay in ICU room along with her, all the time for 1 and half month(me and my sis alternate for every 2-4 hours in ICU room). Those were worst days of our life and we got to see so much of negligence by doctors and nurses in that multi room ICU ward and came to know reality of commercialization of healthcare services.
During ICU stay, we tried all across internet and from best medical people who may know any patient living in India on Ventilator at home, so we could take some reference or guidance however nothing found out!. Neither we could found any information on actual working grounds for the things required, how to setup ICU and do medical procedures, when to dispose or replace things etc. So,during this period, we kept studying Ventilator and other related information from internet on our mobile from various links (mainly patientslikeme.com) and later we decided to take our mother on Ventilator at home with hope that we can see her back in home condition atleast for few days.
And we knew (and mumma as well) as one of doctor told us during ALS diagnosis "that today is better then tomorrow for her". So live for today. During these last EIGHT years- we tried many options in first 2 years to find miracle for this incurable disease e.g. alternative therapies->. Homeopathy, Ayurvedic, Panchkarma oil massages, speech therapy, physiotherapy, medicines, Bijnor renowned Vaid medicines and many others. After trying all, still disease continued to progress its course effecting legs, arms, speech, swallowing abilities, difficulty in breathing and mom reached the stage of Ventilator in NOV 2010. We brought mom home on ventilator in DEC 2010, resisting every other person(doctors, nurses) in medical fraternity in treating hospital (also family and relatives) who said “ you can’t keep patient on Ventilator in home in INDIA ….”. Our mother wanted to come out of that ICU and reach back home. We took permission and continued to stay in ICU room along with her, all the time for 1 and half month(me and my sis alternate for every 2-4 hours in ICU room). Those were worst days of our life and we got to see so much of negligence by doctors and nurses in that multi room ICU ward and came to know reality of commercialization of healthcare services.
During ICU stay, we tried all across internet and from best medical people who may know any patient living in India on Ventilator at home, so we could take some reference or guidance however nothing found out!. Neither we could found any information on actual working grounds for the things required, how to setup ICU and do medical procedures, when to dispose or replace things etc. So,during this period, we kept studying Ventilator and other related information from internet on our mobile from various links (mainly patientslikeme.com) and later we decided to take our mother on Ventilator at home with hope that we can see her back in home condition atleast for few days.
And with God’s blessings and mumma's courage, we completed over 7 years with her on Vent (starting on 12th Dec 2010 ..THE DATE we brought her home on Vent..... which is also her Birthday :-)
It wasn’t at all easy journey since 2008...there are many challenges and situations which drains us out mentally,emotionally and physically, regularly in our unusual life.
Presently her whole body is immovable except movement in eyes, she can’t speak, can’t eat (feeding via PEG since Oct 2010 and in June 2016 we got fourth change of PEG BRT at home ), however her all senses are intact(and NOT on vegetative state!) and she is in front of us watching and feeling every minute of life in home atmosphere. (Watches TV, religious programs, movies, Comedy nights with Kapil etc, and fan of Amitabh Bachhan, Salman Khan, Kapil Sharma etc. ). Also , its an honor that we receive personalized letter from Mr Amitabh Bachhan Sir for our beloved mother in 2017.
There are very few people or even medical information available in India about this disease. And taking good care of patients on long term Ventilator is sometime ignored in best of hospitals as well. Also contacting an infection in multi-people ICU Units is more dangerous then in home.
Moreover, It is very common to see bedsores in hospitals for patients who are just bedridden for few days(mumma also got bedsores within 10 days of ICU stay). We can now say "bedsores actually gets form due to negligence of hospital staff, while at home care -mumma never experienced bed sores despite more than 7 yrs of continuous bedridden condition".
With time, we moved from thinking "Why it happened to us" to "lets work towards helping other patients and their families " in managing this devastating disease progression. This way we found our purpose of our life or may be God destined our life like this. We started writing necessary information in this website (and adding videos to our youtube link), created 'ALS care & support whatsapp group' in 2015 and keep on updating this site(and youtube) whenever we find time.
Purpose of creating this website to spread awareness about this disease and its management in India.
There are very few people or even medical information available in India about this disease. And taking good care of patients on long term Ventilator is sometime ignored in best of hospitals as well. Also contacting an infection in multi-people ICU Units is more dangerous then in home.
Moreover, It is very common to see bedsores in hospitals for patients who are just bedridden for few days(mumma also got bedsores within 10 days of ICU stay). We can now say "bedsores actually gets form due to negligence of hospital staff, while at home care -mumma never experienced bed sores despite more than 7 yrs of continuous bedridden condition".
With time, we moved from thinking "Why it happened to us" to "lets work towards helping other patients and their families " in managing this devastating disease progression. This way we found our purpose of our life or may be God destined our life like this. We started writing necessary information in this website (and adding videos to our youtube link), created 'ALS care & support whatsapp group' in 2015 and keep on updating this site(and youtube) whenever we find time.
Purpose of creating this website to spread awareness about this disease and its management in India.
Satvinder & Sukhvinder ( Daughters)
Our mother left to heavenly abode in Sept 2018, after 11 years fight with ALS, out of which around 8 years were on 24*7 Ventilator at home ICU setup. She had tremendous courage and always had smiles on her face during this whole journey. She is source of our strength to move forward, and we will continue to cherish all smiling moments and celebrations experienced in our unusual life journey.
Site Map:
Home page Life Learnings and Procedures Tips Contact us Testimonials/Blessings Video Gallery Image Gallery Analytics
Dressing Home Vent care management (equipments, procedures and regular supplies) Feed preparation and PEG feeding
Ventilator Shout Out!!! ICU -Build safe ICUs, save lives. Open letter to Indian Government on ALS C & S group demands
Home page Life Learnings and Procedures Tips Contact us Testimonials/Blessings Video Gallery Image Gallery Analytics
Dressing Home Vent care management (equipments, procedures and regular supplies) Feed preparation and PEG feeding
Ventilator Shout Out!!! ICU -Build safe ICUs, save lives. Open letter to Indian Government on ALS C & S group demands
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