ALS researcher living with the disease still fighting for a cure

Dr. Rahul Desikan, who was diagnosed with the debilitating illness last year, can no longer speak but continues to work.
6:39 | 11/23/18

Coming up in the next {{countdown}} {{countdownlbl}}

Coming up next:

{{nextVideo.title}}

{{nextVideo.description}}

Skip to this video now

Now Playing:

{{currentVideo.title}}

Comments
Related Extras
Related Videos
Video Transcript
Transcript for ALS researcher living with the disease still fighting for a cure
All right, we do want to move on to our "Gma" cover story and recently met an inspiring young doctor facing a life-changing diagnosis of Lou Gehrig's disease and given him one year to live and that's not stopped him to find a cure for als to help others. He is a scientist in a race against time. I feel like the work that he is doing is a very big deal. Reporter: A leader in the research of als, Lou Gehrig's disease which kills off nerve cells that make it possible for us to breathe, talk, move and live. He's discovering new jeans that cause als. It will change how we're able to diagnose patients. Reporter: His research may also lead it a cure and even bigger deal to him because he himself has als, diagnosed just last year. He's been given a year to live. The news shocking to him and his wife Maya also a doctor. They're raising two boy, ages 2 and 4. How baffling is it that he got this? It's baffling that he was studies it and he got it and that's just ironic. No genetic predisposition. Great health. And he was quite young. Yep. So, yep, for all of those reasons, there was no reason to suspect als. Reporter: 18 months after his diagnosis, he can no longer speak. He can only slightly tilt his head and barely squeeze one hand. He uses his mouth to focus in on the spot and then he uses the clicker to actually click it. Reporter: He communicates with the help of a computer with a special headset that moves the cursor on the green. The text to speech device is able to convert the text to speech. Because of this lengthy process we submitted some of our questions in advance. His message is urgent. I want to get the word out that als can happen to anyone. We need to come together as a society and tack als head on like we have done for heart disease and cancer. Reporter: He says his fellow doctors need to rethink their strategy because people with these diseases suffer beyond belief. I felt like I was being given a death sentence and there was nothing whatsoever that anyone could do to stop this. Reporter: But he isn't wasting one moment despite his condition. He works every day countless hours on his computer researching, tackling this disease's biggest questions. Why does it progress slower in people like Stephen hawking and faster in people like me? These young scientists from his lab are trying to find those answers. They're meeting at his home inspired to conquer the disease with and for him. He combines his genetic studies with strong statistical methods and also imaging to achieve goals that, you know, other labs wouldn't think of doing without rahul at the helm. Reporter: The doctors have given you a year. What is your reason to keep going and fighting. It's the hardest thing to get out of bed every morning. My wife and kids give me the courage to fight. I love my work because it makes me feel alive and gives me purpose. I want to really, really, really beat als and this keeps me going. Reporter: While his work and family keep him going many times the reality of his situation becomes unbearable. What is the hardest part in all of this for you? The loss of the relationship with my sons is the hardest thing. Hands down, I just want one hour. How hard is it not to be able to hold your children? In his stillness memories are a comfort. I imagine the monsoons in India where I grew up. The new England fall, spring in Paris and summer in central park. I live them, see them, feel them and hear them. He is constantly thinking. What is his intuition telling him. That he's not going to die from this disease. What a fighter's spirit. Getting very good at cutting and pasting. You are so good. Control V and control V. You thought that was funny. I can make my husband laugh still. He loves family, friends and food. You like burritos? Yes. You can read his every movement, his gestures, his expressions. I call myself his blink interpreter and spend a lot of time together and I definitely think it's brought us closer together. Reporter: The young scientists in his lab group lifting him up. His best friend since college moved across the country and helps him all day long. If you had a word to summarize your friend, what would it be? He's just a great heart. Reporter: In fact, rahul says there's love all around him and he's not going anywhere any time soon. We are divine and heaven is right here. Heaven is right here. This is heaven. Heaven is right here on Earth. And rahul shared with us what he was thankful for. His incredible wife, Maya, their two young boy, his family, his friends at ucsf medical center, quote, they keep me alive every day and their strength is my healer. It is an incredible story. You said it a couple of times during the interview you had to stop because everybody in the room including you was fighting tears. Yeah, we had to stop rolling. Actually the first time I've ever conducted an interview where we all had to stop and just take a moment to compose ourselves. It's such a powerful story and despite the diagnosis he was diagnosed just a little over a year ago. The work that he's doing is just -- he will not be stopped. He is at his computer every day and authored over 20 papers since his diagnosis and been doing groundbreaking research with als as well as Alzheimer's. He's moving the ball forward on the research. You brought up a good point too. Do you get the sense that he's learning more now actually physically feeling the symptoms of this awful disease. He feels almost like he has -- he does have an insider's look into what this disease does to people now. It's really beautiful to see how you told this story but also how his purpose has given him life. It certainly has and that family how they've come together. Let's send things over to ginger.

This transcript has been automatically generated and may not be 100% accurate.

{"id":59371888,"title":"ALS researcher living with the disease still fighting for a cure","duration":"6:39","description":"Dr. Rahul Desikan, who was diagnosed with the debilitating illness last year, can no longer speak but continues to work.","url":"/GMA/Wellness/video/als-researcher-living-disease-fighting-cure-59371888","section":"GMA","mediaType":"default"}