Spinal cord injury – global coordination and support system needed

ShahinaJoly,

I read these and I am very sorry that this has happened to someone in your family. My younger brother broke his neck at C1-C2 many years ago and was quadriplegic, on a respirator, constantly sick with pneumonia, until he died a year and a half after his accident. It was one of the most horrible parts of my life to want to help, and not be able to. It affected many people. I do not know how God allows such things to happen.

You know online marketing and advertising. I suggest you create a fund raiser on Facebook or other social media. Then see if you can raise support. I used to follow groups trying to cure this type of injury, but I have not in many years. You might be able to find a group that would try, but the chance is very small. It is like trying to move a mountain with a teaspoon. Not completely impossible, but not very likely at all.

The night after my brother’s accident (he was in his 30’s then and a strong young man) officials from the hospital came to my mother and I, in the middle of the night to ask if we would donate his organs. We declined because we wanted to talk to him again. In retrospect, all the time past that, he was a heavy heavy heavy burden – emotionally, financially, time wise. I only mention it. It was heart wrenching.

We did manage to get them to put in a “talking trache” which allowed him to speak while on the ventilator. Before that we found and hired a lip reader who could translate for us, reading his lips and telling us what he was saying. In the Dana book there are several instances where that sort of thing is described. My brother was the reason I spent so much time thinking about waking people from comas. He was unconscious for a month and the doctors gave no hope.

The Christopher Reeve foundation studies and tries to help with spinal cord injury. https://www.christopherreeve.org/living-with-paralysis/stats-about-paralysis Reporting the numbers just makes it more dismal and hopeless. Except there are others who share the same pain.

“spinal cord injury” on the internet has about 20 million entry points. I found “সুষুম্না আঘাত” and there are some entries for Bangla. But it is not hopeful. I cannot read them well enough to judge if any would be of any help.

This is the kind of thing that requires many people. You can devote your life to trying to get all the people affected, globally, to work together. Otherwise you can only wait.

I checked on progress with spinal cord injuries. There are groups trying stem cells, and groups using electrical stimulation or using electronics to bypass the damaged cells. And all the groups are only doing it because they benefit from the pain and suffering of others.

My best advice to you is to encourage you to get a way to accept donations online, and there are some nonprofit groups that will help with this. Just be aware they also want something.

Think what it will cost to live. Write out a budget, even if you have no way to cover that cost. I don’t know what your family’s future will be, but there are tens of thousands around the world in your situation. And many more with other problems as, or more, severe. Many people live decent lives.

Life is very strange. My mother had four sisters. And two of those sisters had sons who died from broken necks. Those were my first cousins. One died immediately, but the other lived for many years unable to walk or move well. Young men are the most likely to have spinal cord injuries, then young women in accidents, then older people, then young children and people in car accidents. Like I say, life is very strange.

If you need help, I can try to offer advice. It will be hard, and it will be painful at times. But it is not impossible. And what else is there to do, but try your best. If you want to publish that book in Bengali, if it has any value, you can use the proceeds. If I had any advice for Bangladesh, it would be that they could be world leaders in anything they try, but it is hard work, and it has to be sustained for decades, not days or months.

The groups that try to treat spinal cord injuries are spending hundreds of thousands, or millions, per patient. The automation of the movements using sensors and computer stimulation are the lowest cost. There are groups simply making robotic arms and legs. External robotic limbs and tools help, but they need refinement and much lower cost. Much of the stem cell work is simple lab methods, not much more complicated than cooking. Where all of the groups fail, is not working together. And working together is mostly a matter of having tools for that. I tried to get help to make the Internet work for everyone, and keep track of who is working on what. But I do not have those kinds of resources for one country or problem, let alone for all of it. Even if I keep trying to find a way.

Put his story online where you can ask for support.