Mrs Jyoti Ronghe, 57 of Pune has been battling the crippling Multiple Sclerosis condition for more than 2 decades now. She talks of the challenges of tackling such a condition.
Please tell us a bit about your condition, as in what you are suffering from
I am suffering from Secondary Progressive Multiple Sclerosis since 1998. I am a Mumbai girl. I moved to Pune after my marriage. My father-in-law being a doctor, I was taken to some doctors known to him after I was diagnosed with MS. My parents then took me to Mumbai and my MRI was done in Bombay Hospital, where they got the colour plates etc. Following the MRI, my treatment was done in Pune where I consulted neorologists. My children were small, so there was no way I could stay back in Mumbai. Even though there was not much awareness about MS at that time, by virtue of my work I had international clients who knew about MS and they got me a lot of reading material on the condition as internet was not so widely available at the time. I was worried about my children and I hoped I wouldn’t die. So I read up a lot on it.
What were the early symptoms? What is your present condition?
I faced problems in walking. There is a lack of balance sometimes. My right leg doesn’t move on its own. Even though I walk at home, if I have to go out for longer periods, I use the wheel chair. I also experienced fatigue and vision problems as early symptoms.
Is there a history of any kind of MS related condition in your family?
There is no medical history of MS in my family
What medications are you on?
I am taking Dimegen at present
Were there any side-effects of the medicines?
I used to have stomach upset. Not loose motions or anything. But always felt full and uncomfortable. The doctors had fore warned me about this. But now I do not have this side effect. But I have urine incontinence, so I need to wear diapers when I go out. At home, I am conditioned to go to the washroom every hour.
What were some of the challenges you faced while handling your condition?
As I can't walk without support, I need help outside my home. I cannot stoop down, so I need help in managing my home. I also tend to get tired. So I cannot undertake lengthy jobs. This is the reason why I had to stop doing a job with long hours. I am a professional Social Worker by training and have experience of working as an Adoption Coordinator for more than 2 decades in a well known Adoption Agency.
What kind of specialists do you consult and how often?
Along with the neurologist I also consult an orthopaedic. Sometimes because of my loss of balance, I have fallen down and suffered ligament injuries which is why I have had to consult an orthopaedic.
What resources are available to you in your city to help you in managing the condition?
The local MSSI Chapter is the only help I get in the city
Have you tried complementary medicine or therapies, like homeopathy or yoga?
I had tried Homeopathy and Ayurveda. But they did not help. I have not really made any dietary changes. I am a vegetarian and I like to eat healthy.
Has it been difficult emotionally to cope with your condition?
It was and is emotional to handle my challenging medical condition. When diagnosed with MS, thinking about the future of my then school going children was my motivation to overcome my MS.
How has your family supported you in this?
I am blessed to have great family support. I have not faced any stigma from outsiders, but actually a lot of advice as to what I could do to alleviate my condition. When my children came into the marriageable age, I was a little worried in case their in-laws think I have a hereditary ailment. But they did not have to face such issues.
How have you coped with the condition?
I keep myself occupied with voluntary work for MSSI as a Hon. National Jt Secretary. I also work as an adoption consultant from home.
How has MS changed your perspectives in life?
My MS has made me a better human being. I have started enjoying small things in life, and my family has come closer. I have come in contact with many simple people working selflessly as well as many brave MS Persons.
Message to other MS patients
Be true to yourselves. Be self reliant. And do your work as much as you can. Also try and help others as much as you can. To be self reliant, it is also important to be able to help others. I have imbibed these values from my parents who are still around to support me despite their advancing years. Sharing is important.
