When a stroke leaves you unable to speak: Chennai couple's fight against aphasia

Filmmaker Jayendra Panchapakesan was fielding questions in an interview with Carnatic vocalist TM Krishna when he got that fateful phone call. The duo had shot a music film together and had successfully showcased it in several cities across the United States of America. With the vocalist in tow, Jayendra recalls, he made a frantic exit from the venue in Royapettah. He reached the parlour from where the call had come within ten minutes, to find his wife Sudha collapsed on the floor, her eyes half closed, after having suffered a severe stroke.

 

Their first bout with Aphasia

 

"As soon as we got into the ambulance, the medical staff told me her vitals were all normal and so I was a little relieved," he says. "In the hospital, they conducted multiple tests and found a big clot in her carotid artery, a major blood vessel in the neck that supplies blood to the brain." 

 

Doctors deemed it too dangerous to directly dissolve the clot but it had caused the left side of the brain to swell and in turn compress the other side of the organ. A surgery was then conducted to relieve the brain of this excess pressure. 

 

"On my wife's fiftieth birthday on December 1, I was seated next to her in the ICU. I realised that while she could recognise me, she couldn't communicate. She was not able to talk or understand what I was saying," says Jayendra. 

 

The stroke had affected the left side of Sudha's brain, robbing her of all her language skills - speech, reading and writing. "My wife was diagnosed with Aphasia.” 

 

Why we must talk about Aphasia

 

Overnight, the vibrant head of human resources of Qube Cinema Technology, co-founded by Jayendra, was rendered without the ability to express herself verbally. 

 

"The neurologists gave her medicine to ensure that she doesn't get a stroke again and the physiotherapist helped her get back on her feet and regain the use of her right hand and leg but they couldn't point me towards a way to help her regain her speech," says Jayendra. "In India there is limited knowledge among even doctors about how to treat patients with Aphasia.”

 

In Indian cities, 334-424 people in a sample size of 1,00,000 suffer strokes while the number stands at 84-262 in rural areas. Approximately, 25% of these patients develop Aphasia. While everyone knows of physiotherapy and speech therapy, the research and techniques for the latter haven’t kept pace with the West when it comes to Aphasia.

 

"We do not know what kind of intensive therapy is required for neuroplasticity of the brain to kick in to bring speech back. In Aphasia, it might appear like the person has lost all vocabulary. But it is not so. It is still stored in the brain in different places and the brain has to make new connections to access it and use it. So, it becomes really important that awareness is spread about Aphasia and how to treat it. Doctors here told me that the first 6 months after the stroke is all the progress that the patient can make," claims Jayendra. "But through sustained and intensive therapy, Sudha has proved them wrong. I met several other people in the U.S who have achieved great progress after therapy. This is something that everyone who has Aphasia or is taking care of someone  with the condition must know," he reiterates. 

 

Seminar to learn about Aphasia

 

In order to spread awareness on treatment and techniques that can be used to aid the progress of patients with Aphasia, Jayendra in collaboration with Bhoomika Trust is organising a seminar in Chennai. Therapists from the Rehabilitation Institute of Chicago will be flying in for the 3 day seminar which will be held in Sri Ramachandra University from Feb 23 to 25. 

 

"These therapists are the ones who conducted intensive sessions for Sudha in Chicago," explains Jayendra."They will be addressing 50 speech language pathologists and neurologists on the techniques and methods to follow to aid those who suffer from Aphasia," he adds. The session will see discussion on the latest techniques and methods to help treat patients with the condition.

 

Dr. Leora R Cherney, a senior research scientist from the Rehabilitation Institute of Chicago (RIC), will be among the therapists addressing the seminar. She has over 35 years of clinical experience working with adults with neurogenic communication disorders and at present directs the Centre for Aphasia Research and Treatment at the RIC. She will be joined by Ann.K. Oehring, a consultant with the RIC, who develops and provides clinical programming for adults and young adults with Aphasia. 

 

Sudha, who is now 52 years old, will be giving the welcome address at the seminar. "It has been very hard," she explains. "But there has been progress." Her words are halting but her sentences are clear and well enunciated. When asked if therapy at the RIC helped her, she replies with a resounding "Yes". 

 

The RIC holds intensive therapy for Aphasia patients twice a year - in April and December. "Sudha has attended 4 sessions so far. Whatever we learn there, we come back and practice at home. For one session, we took Dr. Aravind Kannan, a speech language pathologist from India to learn the techniques used there," says Jayendra. 

 

 

Dr. Aravind, on returning to India, began conducting similar exercises for Sudha and found consistent improvement. On a regular day, he can be seen talking to Sudha from behind a cardboard sheet, with cards depicting everyday actions spread out in front of him. 

 

"Do you have 'kicking'?" he asks Sudha, during one such session that TNM was allowed to observe. The cardboard sheet between them ensures that she doesn't rely on lip reading to comprehend his words. But Sudha has come a long way already since her first bout with Aphasia. Laughing on hearing his question, she puts up a card showing a young boy kicking the air and says to her therapist, "Got you!"

 

"She was initially non-verbal and could use only a few words. But after the RIC sessions, there was steady progress. Sudha has been working very hard and this is the kind of determination that will help Aphasia patients overcome hurdles," says Dr.Aravind. 

 

He further added that, in India, families fail to create a communicative environment for people suffering from the condition. "Even doctors do not instill any belief about the progress that can be achieved through therapy," he adds.

 

There will also be a special session conducted on February 26 for neurologists, physiotherapists and families of those suffering from Aphasia. "This session will be within the city and will help dedicated family members understand how to communicate with the patient and aid their progress," he says. 

 

Families of Aphasia patients can contact vmurali@bhoomikatrust.org PH: 9841076244 to attend the talk.

 

A message from the couple

 

For Jayendra and Sudha, the last two years have been about self discovery. "Even I didn't know I possessed this kind of patience before we both embarked on this journey of recovery. Family members need to be supportive at all times when it comes it to communication challenges," says Jayendra. "But the real hero here is Sudha. This kind of problem is highly depressing. But she stayed positive throughout and is now reaping the benefits of her hard work," he adds proudly.

 

For Sudha, the journey has led to self-realisation and motivation. To those undergoing treatment for Aphasia, she has these inspiring words, "You can do this. Try. It is hard. But you can do this.”