ALS Care & Support Foundation, India
(Caring & Supporting ALS India Community since 2015)
(Caring & Supporting ALS India Community since 2015)
Life can be tough, difficult and totally unpredictable but NOT impossible
|
|
|
|
Our Vision
An ALS free India
Our Mission
Care, compassion, and cure for ALS
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.
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) 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.
Despite hundreds on ongoing researches in various countries, there is still not a definite cause or cure found till date which can reverse ALS. Only option available with family is quite expensive management of this disease which is different in different stages. Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilator support in order to survive. Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected.
In many countries, Social workers , home care and hospice nurses help patients, families, and caregivers to face multiple challenges like medical, emotional, and financial of coping with ALS, particularly during the final stages of the disease. In 90% of cases, life of patients with ALS is usually between 2-5 years, however it varies from person to person and also may extend more on agreement of Ventilator decision along with proper management. One famous example of person living with variant form of ALS is Stephen Hawkins.
There are lot of activities happening recently in social media which were organized by worldwide ALS organizations to raise disease awareness and building funds for finding cause and treatment for ALS. One such activity which recently continued to remained in news was famous "Ice Bucket Challenge", however its sad to note that the real message behind Ice Bucket Challenge didn't reached to most of Indian population.
Many countries grant complete medical facilities including cost of two ventilators-primary & backup, specially for MND(ALS) patients as its management is very expensive. While in India there is no such grant or support available. Indian Govt should also understand the precious life support for these disease patients and allows to manage our elders in home conditions if there is proven proper care team available.
Amyotrophic lateral sclerosis (ALS, commonly called Lou Gehrig's Disease) 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.
Despite hundreds on ongoing researches in various countries, there is still not a definite cause or cure found till date which can reverse ALS. Only option available with family is quite expensive management of this disease which is different in different stages. Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilator support in order to survive. Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected.
In many countries, Social workers , home care and hospice nurses help patients, families, and caregivers to face multiple challenges like medical, emotional, and financial of coping with ALS, particularly during the final stages of the disease. In 90% of cases, life of patients with ALS is usually between 2-5 years, however it varies from person to person and also may extend more on agreement of Ventilator decision along with proper management. One famous example of person living with variant form of ALS is Stephen Hawkins.
There are lot of activities happening recently in social media which were organized by worldwide ALS organizations to raise disease awareness and building funds for finding cause and treatment for ALS. One such activity which recently continued to remained in news was famous "Ice Bucket Challenge", however its sad to note that the real message behind Ice Bucket Challenge didn't reached to most of Indian population.
Many countries grant complete medical facilities including cost of two ventilators-primary & backup, specially for MND(ALS) patients as its management is very expensive. While in India there is no such grant or support available. Indian Govt should also understand the precious life support for these disease patients and allows to manage our elders in home conditions if there is proven proper care team available.
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)
|
Satvinder Kaur (IT Professional- Integration Architect with IBM/Kyndryl since 2005).
Masters in Computer Management, B.Sc. Sukhvinder Kaur (HR/Educational professional)
M.Phil, Masters in Personnel Management, B.Com. |
Our purpose in life is to support ALS care and Support India group (www.alslifemanagement.weebly.com) and willing to meet scientists, doctors, researchers, philanthropists from India who can help in walking towards path of finding cure for this fatal, progressive neurodegerative disease.
|
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.
if you wish to be part of our 'ALS care & support whatsapp group' started in 2015, (where CALS across India support each other for any day to day challenges during progression of this disease)., then please share few details by clicking the button below
You can view the already submitted information via these forms here at analytics page.
Background about ‘ALS care & Support’ group
After penning down our learnings and experiences in alslifemanagement.weebly.com, it was found that there was very much need to connect with fellow ALS( Amyotrophic lateral sclerosis) patients and families for this rare disease, as even medical practitioners are having very less knowledge about the disease management and latest advancement worldwide. We faced a number of challenges during our mom's ALS journey in the initial few years, as we were unable to locate any similar case to walk this journey along. That thought initiated the inception of the ALS care & Support group in 2015. This group's purpose is to build support among ourselves and have a network of ALS patients and their caregivers in India. So far, this caring family of PALS and CALS had connected with over 650 patients and continuously growing across India to helped channelize this continuously growing knowledge and walk this tough journey TOGETHER. These wonderful caring CALS and PALS members share and support each other on day to day challenges faced by ALS patients and bond like a family to participate in their joys and sorrows.
ALS Care and Support family, India
After penning down our learnings and experiences in alslifemanagement.weebly.com, it was found that there was very much need to connect with fellow ALS( Amyotrophic lateral sclerosis) patients and families for this rare disease, as even medical practitioners are having very less knowledge about the disease management and latest advancement worldwide. We faced a number of challenges during our mom's ALS journey in the initial few years, as we were unable to locate any similar case to walk this journey along. That thought initiated the inception of the ALS care & Support group in 2015. This group's purpose is to build support among ourselves and have a network of ALS patients and their caregivers in India. So far, this caring family of PALS and CALS had connected with over 650 patients and continuously growing across India to helped channelize this continuously growing knowledge and walk this tough journey TOGETHER. These wonderful caring CALS and PALS members share and support each other on day to day challenges faced by ALS patients and bond like a family to participate in their joys and sorrows.
ALS Care and Support family, India
https://linktr.ee/alscasindia
Get Involved
Best worldwide Reference site for ALS
http://www.patientslikeme.com/forum/als/topics
https://www.iamals.org/
http://www.alsforums.com/
http://www.alsmndalliance.org/
http://www.alsa.org/als-care/
http://www.disabled-world.com/artman/publish/famous-als.shtml
https://teamgleason.org/
Lets build a family of PALS and CALS with Compassion, Care and Support.
(Not a single one should be left out without support)
Complete content of this site is purely written by us (Satvinder and Sukhvinder) along with videos with best of our abilities in common language, so please excuse if it doesn't look professional at any place. Our motto is to share knowledge , and hope message gets across to the needful.
For points which are against medical fraternity in SHOUT OUT page, Our intend here is NOT to generalize these opinions , as there are many in medical field who are honest, maintain their integrity and expertise in their skills and hold compassion for sufferings of people. There are many Doctors for whom we hold high regards ; and other Doctors, nurses and ventilator clinical specialist whom we are thankful, and not to forget all those medical suppliers who deliver medical supplies at discounted prices at our doorstep. Thanks All !
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.
|
We demand 'Safe ICUs for ALL' insulated from any negligence.
Please help by sharing the petition to get maximum support of people. |
|
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
