Alok

Age at interview: 37

Brief Outline: Alok had a car accident in 2007, aged 32. A serious spinal injury left him tetraplegic and confined to bed. He has a suprapubic catheter and lives in residential care. He voluntarily helps people with their computer problems via his website.

Background: Alok is married and lives in a residential care home. He has a daughter. Ethnic background / nationality: Indian.

More about me...

Alok, a computer science graduate, was doing well in his career and travelled extensively in his job, often meeting dignitaries in the process. In 2007, however, when he was 32, he had a car accident while driving to the temple with his wife and daughter. All three of them were injured.

 

Alok had a serious spinal injury and became tetraplegic. He became paralysed from the neck down. Alok said that, from being ‘top of the world’ in his career, his life completely changed and he was confined to bed. He spent several months in hospital and was fitted with an indwelling catheter. For the first two months or so, Alok said he was unsure exactly what was happening. It was a huge shock and he knew nothing at this point about spinal injuries or the type of catheter he had. He later learnt that he had a urethral catheter. This was changed about two years later to a suprapubic catheter.

 

After his accident, Alok lived at home and then transferred to residential care where he could be looked after by healthcare professionals. He said they would be the best people to care for him because they knew how to deal with catheter blockages and other issues, any time of day. Alok said his catheter could block at any time and the amount of fluid he had drunk seemed to have little bearing. When his catheter becomes blocked, he gets a severe headache. At the care home, his urine is monitored daily and any problems can be dealt with quickly.  

 

Over the years, Alok said he has always drunk lots of fluid and, fortunately, has rarely had urinary tract infections (UTIs). He advises other catheter users to drink a lot of fluids and said that drinking from a bottle helped rather than from a glass. He felt it was easier psychologically to drink more from a large bottle than from a small glass.

 

Despite being confined to bed, Alok is keen to contribute to society with the computing skills that he had before his accident. He has set up his own website where he helps people online with their computer problems, free of charge.

 

Alok is a spiritual person and said he is grateful for all the things he has in life, including his injury. He said, ‘Even now, I always say thanks to God for showing me so many things in my life. If I had got injured a few more years back, then I might not have got the chance to visit all the different countries, and see all the things like meeting various dignitaries, staying in five star hotels, moving here and there. So all those things that God has shown me, I’m very, very thankful to God for whatever he has given to me. Even this [injury], I don’t have any complaint. It’s just a part of life and it’s a different kind of life. I feel that I’m privileged to get this life, this kind of life too because it’s very rare that people get this kind of experience. So, in one life itself, I have lived two or three lives.’

 

By email, Alok added the following:

"Alok said he always prays to God for improvements in the following areas so that millions of people who are disabled should benefit:

a. Redesign of the catheter so that it can be operated independently and could experience minimum episodes of blockage.

b. Better paramedics in all the countries of the world to handle spinal injured patients quickly and more carefully.

c. To increase the know-how of critical injuries like spinal injury as a part of the curriculum so that everyone should be aware of how to be careful while doing certain things and also how to take care of it once it happens.

d. Every patient should have access to computers, the Internet and important software like voice recognition software so that they can stay connected with their dear ones and can share their knowledge for the betterment of society.”

 

Alok’s catheter can block at any time, day or night. Drinking fluids seems to make no difference....

Can you tell me a little bit about some of the problems that you’ve had with the catheter?

 

Yes. The problems with the catheter is, I have experiences that some of the times it blocks very quickly. And there’s no guarantee that if you drink more or if you drink less, then it won’t block. There is no certain formula for it that, if you do this it’s not going to block. I have tried various different kinds of lifestyle, like drinking less or drinking more of the lemon or drinking more of the cranberry juice, this, that and the other. But I didn’t find anything which can ensure that your catheter is not going to block. It just blocks.

 

It can block any time, that’s the biggest problem actually. It can block now, it can block within half an hour. It can block in the day and it can block in the middle of the night. And the problem is, once it’s blocked, you have to handle it immediately because it can cause, it’s kind of an emergency situation and it can cause [autonomic dysreflexia], give you a stroke or anything can happen because the blood pressure shoots so quickly and that creates a very big problem.

 

And how often would you say that it get blocks?

 

In my case, I don’t get blocks very quickly but, as I said, it can block any time, you know.

 

Yes. And what’s the first thing that you notice when it’s blocked, what’s the first thing that you notice that lets you know.

 

Oh it depends from person to person. As far as I know, I have read about it specifically in spinal injury cases, if it blocks you get autonomic dysreflexia, due to which your blood pressure goes up and you get a headache, sweating, shivering and those kinds of symptoms.

 

I don’t know about how and what happens in people who are not spinally injured but are still dependent on their catheters. In my case I just seem to know. I just get a really severe headache and that headache is like, I tell you it’s like, it feels like your head is going to blow up at any time, you know. 

Drinking lots is important in preventing UTIs. Alok recommends drinking from a bottle rather than...

On the internet I have seen various things which people were using, like lemon juice. Someone recommended lemon juice, so I always used to drink lemon juice. And things like that to avoid it [UTIs]. 

 

Everyone, even the carers, nurses and doctors, they always say to drink a lot of fluids. And also try to drink, like most people say try to drink as much as possible of the citric things, because that helps in keeping away UTIs. 

 

One more thing which, in my case, I have discovered is that it depends on how you drink the water. Because in my case, if I drink water from a glass, after drinking one glass I feel that I’m okay. Or, if you start drinking by glass, it’s the count, the psychological count; one glass; two glasses, and you can’t drink much. Whereas in my case, I drink from a bottle. From a bottle, you are drinking and you are not counting. So I always keep a big bottle, not a small bottle. I always keep a big bottle, not a glass. 

 

Try to drink from a bottle because that way I feel that we can drink more instead of drinking from a small glass. Or even if it’s a glass, try to keep a big glass instead of a small glass because, even with one big sip more, it makes a lot of difference in my input. Yes. 

 

So drinking and how you drink is very important. 

 

Yes, how you drink also makes a lot of difference. Drinking is okay, but how you drink, in my opinion, also makes a lot of difference. Because, as I told you, if I drink from a glass, I will drink one or a maximum of two. And instead, if I am thirsty, if you give me a big bottle of one litre, I can drink half a litre just like that. 

 

Alok said a newly designed catheter could have a microchip that monitors urine output and fluid...

This catheter has been designed in 1935 but still nothing has changed since then. I don’t know but in my layman understanding, I can say, ‘come on man, we just need to find out a way of emptying a tank, a tank which is filling up and which needs to be emptying.’ It can be a small motor, which can suck the urine, whatever is available, and throw it out whenever someone needs to. And that motor can be automatic, can be made automatic, it can be made by manual, it can be controlled manually or automatically. I don’t think it’s a very complex thing to design. It’s very, very simple. 

 

People who are in the designing industry, I think if they start thinking about it, it’s going to be a very simple solution, which can be done. The only complexity comes in terms of what material should we use? And about how to get rid of the sediments which come out and which are the main cause of blocking it, and UTI’s. 

 

But for those also, you can, once you know how to evacuate the bladder completely, after that you can start thinking about what other things we can pass into the bladder so that there won’t be any sediments. The sediments won’t form. We can even pass some medicines at a regular interval so that it will keep it clean and keep it away from the UTI’s.

 

If you look at the catheter, it’s nothing but a tube going into your water tank. Whenever water is there, it just comes out. There is no regulator in there, like when it should come out, when it should not come out. And there is no monitoring of how much is coming out. 

 

Nowadays this technology has become third world, everything can be programmed in a chip in which it gets recorded automatically. We don’t need to have any record of how much we have drunk and how much has come out. It can be recorded on a chip and the chip can automatically monitor your, monitor and take care of how much you are drinking because, if you are drinking and if you are getting less output, you should automatically get a reminder by something attached to your catheter that ‘oh you are drinking less’. You need to check something is going on and you have to talk about it to the doctor or something. 

 

There are so many things you can programme in that, and those are the things which I wish and I feel that those are not difficult. It’s just a matter of asking and gathering together the relevant people who can put all these things in one small product, which can be used along with this simple tube. 

 

Alok now uses his knowledge and skills as a volunteer to help others with their computer problems.

I have got a website of my own. The main theme of my website is that, most of the time, able bodied people look at disabled people and think that we are not doing anything, we are not going to get anything out of them, that they will always be dependent on us. Whereas the theme of my website, what we are doing is we are helping able bodied people. So that’s why I have named it ‘Disabled Helpers’. It means we are disabled but we too can help society. We too can do things which can change societies in the same way as able bodied people. 

 

So currently what I’m doing is, because I was in software training before I had my accident, I’ve got the knowledge of computers and things. So, through my website, I’m just helping people and resolving their computer related problems. 

 

After coming here, into residential care, I saw that even for very small things, people are going to the big shops to get a check-up or get it resolved, and they are paying a hefty amount for that. I got this idea by, one day a carer had a computer problem and said, ‘Oh thank God my computer is working now.’ And I said, “What happened to it?” She said, “Oh it just stopped like that, etc.” When she described the problem, I was already aware of the answer, the solution for that. And I just asked her how much they charged for this. She said £120 for that. 

 

I was just shocked because it’s just a ten minute task to resolve it using one programme. They had taken £120 out of her carer’s pocket, whose earning is not that much. £120 means almost two days salary for her. 

 

That’s where l started helping them so, wherever I have been, I just try to help them as and when because my health doesn’t allow me to help them continuously. But, as and when I get time, I just try to help people too in solving their problems. So they can call me; if I am available, I will listen and advise them or guide them. And, depending on that, if they just benefited I am happy with that. 

So, similar to me, other disabled people also can help. The idea of my website was to bring a lot of disabled people together who are like me, who have the knowledge but they can’t do much because of their disability. And they can’t do it continuously like you know, if you, I have the knowledge but I can’t work. I can’t even sit for two or three hours nowadays. Even in the bed, you can see my neck is so painful that I’m not able to keep it in one place together. But I can see that maybe one hour, two hours, whatever time it is, if they can start contributing to society then that’s going to make a big change in society. That way, whatever they have learned and earned before their accident, and even after their accident, they can share it. And knowledge is always helpful to other people.

 

Citric drinks can help prevent infections. Alok advises drinking lots of fluids from a large...

Everyone, even the carers, nurses and doctors, they always say drink a lot of fluids. And also try to drink, like most people say try to drink as much as possible of the citric things, because that helps in getting and keeping away the UTIs. 

 

One more thing which, in my case, I have discovered that it depends; it’s a bit different how you drink the water. Because, in my case, if I drink the water from a glass, after drinking one glass I feel that I’m okay. And even, or if you start drinking by glass, it’s the count, the psychological count; one glass; two glasses, and you can’t drink much. 

 

Whereas in my case, I drink from a bottle. You know, with a bottle you are drinking and you are not counting. So I always keep a big bottle. Not a small bottle. I always keep a big bottle, not a glass. Try to drink from a bottle because that way you, I feel that we can drink more instead of when drinking from a small glass. Or even if it’s a glass, try to keep a big glass instead of a small glass because, even with one big sip more, it makes a lot of difference in my input. Yes. 

 

So drinking and how you drink is very important?

 

Yeah, how you drink also makes a lot of difference. Drinking is okay, but how you drink, in my opinion, also makes a lot of difference. Because, as I told you, if I drink from a glass, I will drink one or a maximum of two. And instead, if I am thirsty, if you give me a big bottle of one litre, I can drink half a litre just like that. 

 

Alok said that doctors may tell patients about catheters, but patients are often in a state of...

Truly speaking doctors and nurses also tell you about catheters and catheter care, but the thing is, it depends from person to person. Most of the time you are in shock or doctors do tell you so many things, but you don’t remember. And that’s why when, if you have a UTI [urinary tract infection], people might have told you lots of things. But if you go on the internet, immediately you will get four, five suggestions for it. And after looking at those suggestions, you discover that oh I remember the doctor or the nurse or my friend has told me about it. And you just go with that, like out of five choices you will go with the choice which has matched with whatever they have told, someone has told you in the past. 

Alok was supported by his parents, his wife, and his religious faith.

You mentioned that you get support from the carers and information from the internet. Have you had any religious or spiritual faith at all that has helped you? Or it hasn’t really been relevant to you? Everybody’s situation is different.

 

Oh the relatives are there, specifically your close ones, you know your parents. I know my wife has been my biggest inspiration because she also got an injury but she has taken care of herself and she has taken care of my daughter. I am trying to reduce as many problems from my side as possible. I rarely tell her my problems so that, you know, but she is still living alone. Although she is taking care of our daughter, there is still no one to ask and share her problems. 

 

Have you found your religious faith at all helpful? 

 

Yes. I am very, very spiritual. I strongly believe in God, a very strong believer of God. Very strong believer in Karma, as you can see in my room. Whenever I’ve got any problems, all the answers to those problems lie in these sheets on the wall. All these quotes are from Gita, Bhagavad Gita. And all the problems, whenever some problem comes, the answer is in there. I don’t need to go anywhere. The answer lies exactly in there.

 

Even now, I always say thanks to God. I always say thanks to God for showing me so many things in my life. If I had got injured a few more years ago, then I might not have got a chance to visit all the different countries and see all the things, like meeting various dignitaries, staying in five star hotels, moving here and there. So all those things that God has shown me, I’m very, very thankful to God for whatever He has given to me. 

 

Even this [spinal cord injury], I don’t have any complaints. It’s just a part of life, and it’s a different kind of life. And I feel that I’m privileged to get this life, this kind of life too because it’s very rare that people get this kind of experience. So, in one life itself, I have lived two or three lives, you know.