Multiple Sclerosis

Dev

Age at interview: 46
Age at diagnosis: 36
Outline: After falling at a conference and seeing many doctors in India, Dev was diagnosed with MS. Dev’s main MS symptom is diminished mobility in his left leg which has gradually decreased his walking ability over time. The worst part of MS for Dev is the increasing difficulty to stand and play with his daughter, but MS has also afforded Dev the ability to integrate more with his family life, cultivate a father-daughter bond, and engage in hobbies that he loves such as painting and reading. For Dev, “inability is the new ability” in that the things that he no longer can do are overshadowed by the things he is able to do now.
Background: Dev is a father who works in the IT sector as a head of workforce management. Dev enjoys reading, writing, and painting, and spends a lot of his time with his family and especially his daughter. He enjoys playing in his virtual car, watching movies, listening to music, and cooking. Dev identifies as a heterosexual Asian male.

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In 2010, Dev traveled to India to visit a conference, and while he was there, he fell down. After receiving an MRI and seeing three different doctors, Dev was diagnosed with MS. Being a male in India with its tropical weather and low MS prevalence, many of the doctors did not think of MS as a possible diagnosis. Dev’s initial symptoms resolved, but he had a relapse several years later when he began to limp and drag his left leg.  Since then, his limping and left leg drop has progressed over time, greatly reducing his ability to walk.

Dev has tried several medications, including ones that he injected himself (Avonex) and infusions (Ocrevus), which he is currently on. His lesions have not progressed since starting this treatment. In addition to this disease-modifying treatment, Dev takes medication to decrease pain (Gabapentin, Modafinil) and relax his muscles (Baclofen).

Prior to being diagnosed with MS, Dev travelled extensively and was an athlete. He has had to quit these activities and sees his ability to walk continuing to decline such that he now has difficulty walking on uneven surfaces, and even short distances. He does not use any walking aids. He is no longer able to cycle, hike, or shop with his daughter, and these limitations are painful for Dev.

Dev continues to work and has a leadership role in his company.  He feels frustrated that “there is no answer to a lot of questions” about MS. However, after his diagnosis, Dev changed the way he perceives life. For him, “Inability is the new ability.” He accepts that there are things that he cannot change and now appreciates that he can spend more time with his family. His wife helped him during his initial diagnosis by seeking information and finding solutions to the challenges he faced. Dev deals with his sense of loss of himself by reading and painting because it eases his anxiety and quiets the negative feelings that come up sometimes. His advice to others facing a similar situation is to see the unlimited things that one can do within their limitation and then do these.

 

Dev learned about MS with his wife.

Dev learned about MS with his wife.

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We should not Google every symptom because the answer in Google is not the prescriptive answer that one should read.  What we did, we spent a lot of time with our doctors, understanding the disease. And when I was understanding, I made my wife also be part of that entire curriculum of making her understand what the disease was, how it is, what is it, and everything.  So, I would say that the understanding of disease was mutual, not just me being a patient. It was with my wife, who was my caretaker at that time. So, we both went through that same part of knowledge, which helped us, I think so, for her to understand comprehend me better, the pain I am going through or the trauma I am going through and finding new solutions for me. Rather than asking me questions, she tried to find out the answers herself.   

 

Dev slowly developed problems with his ability to walk.

Dev slowly developed problems with his ability to walk.

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Walking even one block, I can't do it. I used to do. I could walk. I used to walk. I could not walk one block as of today. I have to rethink even if I'm going on any jagged surface because I tend to fall sometimes on those. So, all of these things I used to do it, even five years back I was able to do it. Slowly and slowly and slowly and slowly, I'm seeing that I'm not able to do it anymore.

 

Dev’s doctor helps him understand what to do for his MS.

Dev’s doctor helps him understand what to do for his MS.

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He was a very straightforward doctor; I have never seen like that at all. But he made it a point that these are the five things that you need to take care of in your life. You need to be very positive about these are the things that you need. These are the medications you have to have. He actually had educated me about every medication, what I was having and why I was having it. So, I think that those small things really help. If the doctor is very open to you, and makes you understand things, that goes a long way. When you start you start believing a lot of things because what do you read and what are told, they map to each other, that really helps.

 

Dev keeps his house free of clutter to make it easier and safer to walk.

Dev keeps his house free of clutter to make it easier and safer to walk.

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There are no clutters on any of the places in my house. I don't have chairs and tables or too many things in the walking space, so it gives me at least a walking space, that's one. Two, I have ensured that my garage in my house does not have too much upstairs. It is just one, two stairs, and I am there in my garage. So, I don't ever to take too much upstairs there also. That's two. Three, I think I have put everything on my, everything should reach out to my hand so it's easy for me. I've tried to automate as much as possible in my house. All my lights and everything is automated. If you come down to this house, you will be sad to see my house. It is completely automated. I can see the most automated house in my neighborhood. So, all of my lights, everything is through my phone. Every one of the bulbs, even the bulbs, are there through my phone. I have tried to do it myself, and I've changed everything. It makes it easier for me. So even if I just go and tell Alexa that switch off my entire house, it'll switch off the entire house because it's all connected to each other.

 

Dev strategically decides who he tells about his MS.

Dev strategically decides who he tells about his MS.

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Some people shy out of that because they don't want to know about it. Some people-- I think so my mom, my dad is not there, so it's my mom. She knows about it. She is not over here, she is in India, but she understands my issue. But most of the people or most of the friends, half of my friends whom I have talked to, they don't understand it. Or I would say, in some places, I am hesitant to even share that with my friends and family because I think that either they would not understand and then they'll start contemplating it in a very different or very negative way. So, it's better I don't even talk to them.  
INTERVIEWER: How do you decide who to tell and who not to tell, who to talk to about it?  
Whom to talk to is the person who actually pays a lot of attention to me, I think so. Or who is close to me or who has been not sympathizing on my way of life is the person whom I would definitely sit down and talk and help him or her understand what I'm going through. Generally, I’ve seen, and pardon my story out here, but Indians generally sympathize, they don't empathize with you, which is unlike the Americans. OK? And there's nothing racial about it. But this is the way the society has been mapped. So, they try to sympathize a lot, which I dislike in my way of life.  
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So that's the reason I shy out of people who start off saying, “Hey I'm so sorry that you can't walk.” So, I don't even talk to them. I keep myself very out of it.  

 

 

Dev learned from coworkers with MS.

Dev learned from coworkers with MS.

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Two of my colleagues, they had MS. And since then, and that actually helped me to understand because they had MS much ahead in time. And one was from UK another was one for, she was from the US, I think.  I could start correlating a lot of things what I had gone through, and I could understand. And I used to talk a lot with them to understand what MS was. And we used to exchange a lot of information. That helped me.

 

Dev talked to his daughter about what he was like prior to MS.

Dev talked to his daughter about what he was like prior to MS.

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INTERVIEWER: How do you how do you talk to her about your MS?  
I have shared my experiences with her, not the negative part of it but the positive part of it. So, I tell her that this is what it is, but this is how we need to lead our life. She has started understanding that, and I have coached her that, even at the age of 10, whatever she could understand. But I think that she has understood that this is what I am. And believe me, one day, and I'm sharing this very personal stuff. So, one day I was showing her my old DVDs, my videos, and I was climbing the mountain. I used to do that, so I used to climb mountains also. She asked me a question, “Dad, did you ever walk, or you were always like this?” I said that I was never like this. You have a video that proves that I used to do all of these things. I am jet skiing and all this stuff. I saw that smile in her face that it is not like that. And she asked me the question, “Can you tell me what actually had happened and why you limp today?” And then I told her the entire storyline. And whatever she understood. But I found that her reaction towards or helping me has gone up multiple folds, I have seen that.

 

 

Dev describes how he copes with his lost sense of self.  

Dev describes how he copes with his lost sense of self.  

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INTERVIEWER: How has your diagnosis changed your sense of who you are as a person?  
A lot. A lot, actually. I was-- I have confined myself. I used to fly. I have now become very confined to myself. Very much. I will say I have put myself in a box of four corners, which was never, it is unlike the way I have been in my life.  
INTERVIEWER: How do you feel about that new, your box?  
You're talking to a very positive guy. The problem is that I would not be a good subject because I have always thought that, yeah, the four boxes, yes, it is the four corners of the box, but sometimes, some days I feel very left out. I feel very alone. Even with all of the people around, I feel that I am not there. So, I come to my basement. I am quiet sitting over there. But, again, my own attitude says that hey, this is not the end [NAME], so do something. So, I start, I told you I just need water and my colors and my paintbrush and my canvas. I am done with my life; I can do that for years and years. So, I tried to relate myself for everything. And I tried to read and relate, write. So, but still, somewhere in the back of my mind or my heart it says that, hey, you could have done more. Sorry, I want to go with my daughter out to do something, but I cannot. Can I? No. So, there is that sense of, I'm not getting that word. A sense of what? Discomfort? No discomfort is not the right word. A sense of loss, I think so, of my own self.  

 

 

Dev encourages friends and family to understand MS. 

Dev encourages friends and family to understand MS. 

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Please understand what MS is. Please understand. It is important for family and friends to read and understand what MS is. It is not, it is just another disease. Don't take it as a never-ending, the end-of-life disease.

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I would have gone into a black hole if people surrounding me never understood the pain I was going through or the trauma I was going through. So, people need to understand that it isn't, I'm not able to walk because I am having pain in my leg. I'm not able to walk because I don't know how to walk. So, making them understand, people who are close to you, understanding is a very important thing.

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