I am a Parkinson's disease patient. I want to share with you my story, a story of LIGHT and HOPE !

I have been a Parkinson's patient for 15 years since 2008. After being diagnosed, I was so desperate and became completely lost in my life. I didn’t know what to do and how would my life be in the future? Everything was turned into a mess beyond my imagination. Luckily, when I did some research on it, I noticed The Hong Kong Society for Rehabilitation (CRN), a non-profit organization which provides a  variety of activities, including the Harmonica Class which I later joined. However, I wanted to learn more as I was still young and eager to learn! That’s how I heard about The Hong Kong Parkinson’s Disease Association in my life for the first time!

Hong Kong Parkinson’s Disease Association (HKPDA)  was registered as a non-profit organization in 1998 and subsequently changed from Society to Company registration in 2010. Currently, there are more than 1,500 members. HKPDA gives support and encouragement amongst other patients in our life-long journey to fight against and cope with the disease. It organizes a wide variety of activities to encourage patients to face the disease through adopting a positive attitude.  That's why I’m here today!

Parkinson's disease is a chronic brain degenerative disease caused by the deterioration of a part of the brain called the substantia nigra, which fails to produce sufficient dopamine. "Dopamine" is an essential chemical substance responsible for the transmission of nerve messages that controls the function of our body. In the past, this disease mostly occurred in the elderly around sixty years old or above. However, some patients may also develop such disease much earlier, even before forty. When I was in my 50’s, I was diagnosed and confirmed with the disease. I kept asking myself repeatedly. Why me? Why at such a young age? It must have been a mistake, it should not be me ! The process of acceptance is so painful and difficult. Parkinson's Disease doesn't threaten your life, but turning it into a life without dignity!

In our daily life, for patients with Parkinson's disease, we face lots of difficulties when the medicine has not started taking effect yet as our physical performances are greatly affected by the effectiveness of the medicine. All these difficulties lead us to wonder if it is a joke or a test from God? Things or tasks that used to be easy for us can become such a huge challenge. For example, when we take the MTR, if the medicine fails to take effect, even if you stand close to the door of the train, you can barely walk or even not be able to move your legs to get on the train. It is just a small step to normal people, but to us, it is a big obstacle and challenge. It's just too hard to explain what exactly we are facing every single day.

With all the side effects caused by the medicine, our basic abilities are greatly limited. Hence, we need a lot of assistance throughout our daily routine. Besides, with the lack of dopamine, we are always emotional as our temper can be easily affected, which causes us to put our temper on the ones who take care of us.  They have to bear all kinds of mental stress and helplessness we induce, and accept all major or minor requests, even the unreasonable ones. They usually keep it to themselves hence leading to a higher stress level. As the solution of curing Parkinson is still under research, this is a lifelong battle for both of us. To walk through our Parkinson's road together, let’s be more considerate.

I wish that every Parkinson’s patient can plan his own future conscientiously, and live a fulfilling life! I hope to take initiatives to fight for and safeguard the reasonable rights and interests for our patients and their carers.  Disability is not limited to the visible ones, but also the invisible ones, so just show your love and care, a kind gesture can always reach a wound that only compassion can heal. In addition, we don't care whether your life is long or short, but whether you have lived a wonderful and rewarding life! Live in the moment.

I sincerely wish that I can continue to serve Parkinson's patients and bring hope to those who are less unfortunate and under-privileged in the society!