I AM MARY LU, founder of support group Kuching Parkinson’s Society (KPS). I have walked the Parkinson’s Disease journey for 18 years. I wish to walk with those diagnosed after me, hoping that their path will not be so dark.
My journey started in 2001, when I realised there was something wrong with me; I could not put on my pants while standing, and I had to sit to get dressed. After much investigation, I was diagnosed with Parkinson’s Disease (PD) at age 48. It was a big blow to me.
Besides being slow and with poor balance, something else disturbed me. I felt ashamed. I did not want people to know, and I could not bring myself to talk about PD. I felt abnormal. I lost confidence in a lot of things. This pattern of thinking trapped me for years, and had negative effects. I avoided friends. I was miserable and my pride took a blow. I was not at peace.
Now I am able to say that having PD is like having hypertension or diabetes. Why do I need to hide it? But back then, I was unaware of how much my inner self was hurting, haunted by wrong perceptions. Finally, I came to my senses and opened up to a counsellor. Slowly, I was set free … well, not totally free yet. But no more thoughts about how it might be better for me to die.
Through the years, I attended neurology clinic regularly and my PD was under control. I was able to do what I liked for another 10 years: continue working as a nurse … until retirement!
A big thank you to my family and colleagues for their support and understanding, and to my nursing managers and others who believe in me. Believing in God also sustains me.
I would never choose to have PD; it is terrible – losing balance easily, losing dexterity, feeling sick. But now, I am more sensitive to others’ suffering. PD also curbed my pride. I am still learning to live with it.
Knowing that I am slow, I allow myself ample time to prepare for an outing. I avoid getting too tired or agitated, which worsen the symptoms. I am very careful not to fall – anti-slip bathroom floor, grip bars, dry floors. I sit down to put on shoes. I ask for help when necessary. I do stretching exercises on the floor; it’s the safest place. I use the stationary bike in front of TV. I often go swimming … never mind my bulging tummy! My pension is spent on physiotherapy, massage, and yoga class. I force myself to visit the dentist although I’m terrified of the drilling sound.
I eat an appropriate diet and take my supplements. I watch movies that cheer me up, read books with happy endings. I learn to appreciate people and things. I put on lipstick, and choose to be happy with myself. And I focus on whatever I can do today.
My condition fluctuates; I have good days when my movements are less restricted and symptoms are better controlled. There are days when I can’t even stand without support, when every movement is an effort – I go backwards, I knock the table, knock the chair, break glasses or plates, and fall down so easily.
When I put on my shirt or sport bra, I sweat and pull in the entanglement. I experience unexplained pain, episodes of tormenting discomfort and uneasiness, and then I think of my other friends going through different, indescribable suffering.
With the help of volunteers, I started a support group for people like me. Kuching Parkinson’s Society is made up of people with PD and their caregivers. We learn, share and support each other. Yes, PD is incurable but medicine and supportive treatment such as exercise, physiotherapy, occupational therapy, and speech therapy can help us.
Do join us, my friends. You are not alone.
Parkinson’s Support Group Contacts:
KUCHING – Mary Lu 016-895 1877
082 236 354
SIBU – Mr. Wong 016-347 1853