"Always ask your self, what can I do to bring us closer to a cure, or make the world a better place"
Name: Susie Chandy
Susie Chandy and Friends, 2004
Drive Around the World team members met Susie Chandy at the Malaysian Parkinson's Disease Association annual Banquet. She was there with here daughter Ann and they both made the evening a memorable one for us. Susie Chandy is 68 years old and has been living with Parkinson's disease since 1992. She lives with here daughters in Subang Jaya, outside the Malaysian Capital of Kuala Lumpur.
She is of Indian decent, like many Malaysians, and while visiting Madras, India during a vacation, her daughter's friend who is a doctor thought he saw symptoms (glazed look, slow movements) and advised her to go for further diagnosis when she got home to Malaysia. Unfortunately the doctor's suspicions were correct. The following are her answers to some questions I posed to her about Parkinson's Disease.
Has your life changed since your diagnosis? Yes, very much so. So many of the things that I used to do and loved doing, I cannot do now. Reading is difficult (my sight is failing me as well as it is difficult to concentrate). I am unable to go shopping unless someone takes me. I cannot drive. I am not able to teach because my voice is very soft and I can't remember things clearly. I cannot look after my grandchildren. I am unable to live in my own house and look after it. Because I have no home of my own, it is difficult for me to entertain guests or family (invite them to dinner, have family from overseas come for the holidays etc). All of these things used to be very important aspects of my life and defined the person I am.
What would you like the general pubic to know about Parkinson's Disease? Most people think PD is just about tremors but it is more than that. I have rigidity rather than tremors - my body freezes up. I cannot move my legs when I want them to move, I cannot swallow, clear my throat or cough. I cannot sound my words even though they are in my head. I cannot sign my name to withdraw money from the bank and it is very difficult using a fork and a spoon or even drinking from a cup. I hope the public becomes more sympathetic and understanding about these things.
What advice do you have for people just diagnosed with PD? Don't be discouraged. It is not so bad in the beginning so make full use of the time you have instead of being depressed and disheartened.
Words of wisdom for the researchers who are working on a cure: Work without fail. Your work is of utmost importance to PD sufferers.
Susie is true to her word and hasn't let the disease get her down.
She comments, since being diagnosed with PD, I have traveled to the United States, to New Zealand, Australia, Ireland, England, to Indonesia and three times to India with different members of my family. I enjoy traveling very much. I have relatives of friends in all the places I visited and I wanted to see them and spend time with them. I sold my house so I would have enough finances to travel. Nowadays it is not so easy for me to travel as I have to cart a lot of medication along with me and also I need a full time caregiver.
Always ask your self, what can I do to bring us closer to a cure, or make the world a better place.
Susie: In the year 2000, I wrote a book about my life. I wrote most of it on a computer and my friend Gillian Coward from Ireland helped edit it. I sold the book to friends and family and collected enough money to buy four wheelchairs for the Parkinson's Association of Malaysia. I wanted to share my story and help the association as well.
I still go to church every Sunday and am active in my cell group. My church members are very supportive and caring and it gives me a chance to go out of the house and meet people and have fellowship with them.
I take turns living with my four daughters - three of whom are living in Subang Jaya, Selangor in Malaysia and another who lives in India.