mthapa
Member
- Joined
- Aug 16, 2012
- Messages
- 16
- Reason
- PALS
- Diagnosis
- 07/2013
- Country
- IND
- State
- Mid Region
- City
- delhi
We can see that there are lots of local & international organizations which helps ALS/MND affected patients & families. Basically they focus on providing information about disease, suggesting you how to cope with life after ALS, complications in life after ALS etc. They conduct stress reducing programs & events where affected patients & family get psychological counseling from experts, participate on games or some fun activities, sharing thoughts & experience etc. We all know that there is no cure of ALS available yet & these activities can be helpful to them but the question remains, is it good enough ?
We are ignoring most important aspect of their life. We have undermined the economic & financial aspect of ALS/MND. There is no cure but they have to use expensive supportive equipments, take regular treatment of other health related complexity of ALS. Their life gradually becomes difficult, difficult & more difficult.
For instance, there is a four member family of husband, wife & two children. If one of them (husband or wife) became victim of ALS/MND, what happens to that family ? ALS victim couldn't continue job & another becomes carer of him or her. As the disease progresses, patient becomes more & more dependent to the carer which results lack of working or earning opportunity for carer. You can imagine the financial situation of that family. How do they fulfill their daily need ? how do they take care of their children & secure their future ? how do they cover treatment expenditure ?
They might get some short of financial support from government & community in developed countries but the situation is so worse in third world & people having poor financial condition. For me, I don't have medical insurance, have 10 years of son to care & educate. My wife is taking care of me & she has to work in office to fulfill our financial need. She works in a government office & earns around 200 USD per month. It is very difficult for us to survive within this money while facing ALS. I was diagnosed MND such young age 25 when I was building my career as a journalist. Every people does have dream for his family & future. We can't fulfill all our desires but most of the people do have opportunity to make efforts to fulfill it. Unfortunately, I couldn't have this opportunity because of this disease. My family was dependent upon me but in a whisker of time things changed dramatically when I diagnosed ALS/MND. This disease made my life very difficult & now I am totally dependent upon my family. I cannot do anything for my little son, wife & family except watching them in difficulty.
There are lots of PALS & CALS in the third world & poor community who are facing situation like me or even worse than me who really need direct financial support to ease their life. We all are facing same disease but we have very different situation. Some of us are worried about disease only but some of us worried about to fulfill their basic survival need. A small 100$ monthly grant can help them to ease their life to some extent. humanitarian work doesn't have boundary. we can help needy people living any part of the world. if we start to create a group of 10 people ready to help 10$ to ALS affected family every month, we can help a PALS & family. We all should start a campaign to help who needs it.
So, the mental support or counseling only works when we provide surviving situation to the affected patients & family. Organizations working on the field of ALS/MND should consider it seriously & they have to operate programs immediately to provide direct grant or financial support to the affected patients & family.
We are ignoring most important aspect of their life. We have undermined the economic & financial aspect of ALS/MND. There is no cure but they have to use expensive supportive equipments, take regular treatment of other health related complexity of ALS. Their life gradually becomes difficult, difficult & more difficult.
For instance, there is a four member family of husband, wife & two children. If one of them (husband or wife) became victim of ALS/MND, what happens to that family ? ALS victim couldn't continue job & another becomes carer of him or her. As the disease progresses, patient becomes more & more dependent to the carer which results lack of working or earning opportunity for carer. You can imagine the financial situation of that family. How do they fulfill their daily need ? how do they take care of their children & secure their future ? how do they cover treatment expenditure ?
They might get some short of financial support from government & community in developed countries but the situation is so worse in third world & people having poor financial condition. For me, I don't have medical insurance, have 10 years of son to care & educate. My wife is taking care of me & she has to work in office to fulfill our financial need. She works in a government office & earns around 200 USD per month. It is very difficult for us to survive within this money while facing ALS. I was diagnosed MND such young age 25 when I was building my career as a journalist. Every people does have dream for his family & future. We can't fulfill all our desires but most of the people do have opportunity to make efforts to fulfill it. Unfortunately, I couldn't have this opportunity because of this disease. My family was dependent upon me but in a whisker of time things changed dramatically when I diagnosed ALS/MND. This disease made my life very difficult & now I am totally dependent upon my family. I cannot do anything for my little son, wife & family except watching them in difficulty.
There are lots of PALS & CALS in the third world & poor community who are facing situation like me or even worse than me who really need direct financial support to ease their life. We all are facing same disease but we have very different situation. Some of us are worried about disease only but some of us worried about to fulfill their basic survival need. A small 100$ monthly grant can help them to ease their life to some extent. humanitarian work doesn't have boundary. we can help needy people living any part of the world. if we start to create a group of 10 people ready to help 10$ to ALS affected family every month, we can help a PALS & family. We all should start a campaign to help who needs it.
So, the mental support or counseling only works when we provide surviving situation to the affected patients & family. Organizations working on the field of ALS/MND should consider it seriously & they have to operate programs immediately to provide direct grant or financial support to the affected patients & family.