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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.
 
What's the code of your illness :?:
 
doctors have diagnosed me Motor Neuron Disease & some of them called it ALS.
 
Mthapa, Im so sooooo sorry it must be so difficult in your country to face such disease with no financial/medical assistance/support -i had never thought about that aspect until reading your post now, that it really hits home - how are ALS people coping in your country... oh goodness! Is their no organisation set up in your area to assist? Do you know many family's and if so how many families in your region that are facing this disease with no help? Perhaps you could set up a facebook page or blog site or website that is dedicated to your cause and profiles some of families for donation - there must be a way of going about things that ensures people donating are reassured that the money actually goes to the PALS/ALS people in need ... I know of some people in New Zealand who set up websites to accept donations as it is such a costly disease - and thats New Zealand! A supposedly 1st world country - I cant imagine how difficult it will b e in a third world country - and good for you for wanting to help do something about it.
 
mthapa i have posted you here - im just waiting for it to be cleared by a moderator
 
Hello wings, thanks for your comment but please tell me why do you think it has to be cleared by a moderator ?
 
mthapa i have no idea - i used no bad language -url links it was a lengthy response and too tired now to retyrpe it :) sorry hopefully it will be here for you to read soon hun :) best wishes
 
How long does moderator inspection usually take -i have had a few go there but i think all get cleared? I just want to say i think its awesome you want o set up a support group network for ALS victims in your country -it must be so very difficult.
 
also mthapa i have thought further and realised -a dear friend of mine has alot to do with an organistaion in Nepal - He is a Kiwi guy living their getting mobility scotters and wheel chairs donated to the disabled amongst many things - i have just skyped a txt message to her now to get his contact details to pass onto you. He could be a very helpful person to meet.
 
thanks again for giving time to reply me. yes, I strongly feel that there might be financial support group for affected patients & family. it is not only for me or my country, it is necessary for the affected patients & family living throughout the world & having poor financial situation. i have gone through very difficult circumstances in last 10 years, many times death seemed easy than surviving. i would be glad to meet your friend operating organization to help disabled people in nepal. I live in capital city, so he won't have problem to meet me. I will send you my email id to you.
 
Mthapa, there is a similar group that has previously been suggested on this board except it is to benifit people on this Forum and on Facebook.
 
Sorry I am from NY and don't buy any of this .
There are people here that are financially hurting as well from this awful disease .
Some are losing their homes and their utilities are being shut off .

I saw something very familiar to this for a different cause .

Sorry if you have ALS May god bless you and yours
 
Mthapa, you posted something very similar to this 3 days ago on another thread saying $100 per month would help you. Pardon my bluntness and forgive me if I'm wrong but are you asking the forum members here for money? I'm sure you understand that we all have to be very aware of scams nowadays. I donate to MNDScotland through the proper channels. Maybe if you contacted a MND Association directly with your suggestions and concerns they would be able to assist you in some way. I wish you well.
 
Mthapa i have posted an address for you but it went to the mods and still not here its a registered charitable trust with a base in Nepal called Mends -they are focused on just what I THINK? you are talking about with assisting families in need - there are several New Zealand based trusts over there doing wonderful work -you should be talking to them -im sure they wont be that hard to find. Ive just read the above posts and would be really upset if you are asking people for 'cash' ... it questions your integrity and certainly has you sounding like a scammer. I would be furious if you are taking up my good precious time to get money. On this site it is like kicking ppl when they are down - please explain... are you actually asking for money to be sent to you?
 
I want to feel secure when I come here as everyone else does but when reading this post I did not. We should not be hit for donations when we all have our own problems and not for sure of this story.
 
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