Parkinson's support group urged
Published on: Thursday, January 19, 2017
Kota Kinabalu: It's time for sufferers of Parkinson's Disease (PD) to come together and form a PD Support Group in Sabah, instead of languishing at home.Making the suggestion at the Seminar on "From Heart Diseases to Parkinson's…" at Sky Hotel, Saturday, President of the Perak Parkinson's Association (PPA), Samuel Ng, 52, from Ipoh offered help to start one, here.Formed in December 2012, PPA is a non-profit organisation and comprises patients, family members, caregivers and supporters. Dedicated to the support of People with PD (PwP) and their caregivers in Malaysia, it aims to create awareness and educate the general public on recognising the symptoms of the disease and treatment options.
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"Sibu has a similar association. Don't hide at home. We should start a support group to help each other fight the disease. People with Parkinson's Disease need to have social life too. You will suffer more if you confine yourselves to the home."We (PPA) are volunteers and would love to help. I can help as much as possible but you have to help yourselves too. Come out of your home, we need to meet up and talk," said the father of two grown-up children.Ng, who is also a World Parkinson's Congress Ambassador, was responding to Catherine Chong, a participant, who wondered whether the former would offer his expertise.He clarified that not only elderly people have the risk of getting PD as the youngest known patient was said to be aged 22. "And the latest news I heard is that a two-year-old year in the US was reportedly diagnosed as having the disease. I don't know why."
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And replying to Jercy Ng, a nurse, on how to encourage PwP to come out and discuss the formation of a support group, he said : "It's not easy but things can be done. It's a matter of how you do it. I started with my first forum on PD in Ipoh. At that time, not many people knew or cared about the disease."Ng, who has been suffering from PD for 10 years, may have an edge over other patients, given his previous career in the pharmaceutical industry. "Although PD is a horrible disease which takes away your mobility, it is not the end of the world. Don't let go of life. In fact, my life started from here, so there is life after Parkinson's.
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You can still enjoy a good quality of life provided you change your mindset by adopting the 3Ps, namely Positive thinking, Positive attitude and Positive action. The choice is in your hands," he advised.To another question from retired nurse Jamilah Sibangun, he said globally, statistics show that more men than women are affected. "Although there are no official statistics, it is estimated by medical experts that at least 50,000 people have Parkinson's Disease in Malaysia."Dispelling more myths in his presentation on Living a Meaningful Life with Parkinson's Disease, Ng explained that PD is not detected through a blood test but recognised by changes in one's physical movement and assessment by a neurologist and geriatrician, adding that the chances of it being a hereditary disease is less than 5pc, according to professors of PD."Parkinson's is an unpreventable and incurable disease. It affects people differently, varying from person to person. There are different symptoms. In my case, I first felt a numbness in my left hand but I had absolutely no idea that it was a symptom of PD," the President said. "But then experiencing a tremor does not mean one has the disease."At the age of 42, after suffering for almost three years, Ng was diagnosed by a doctor who told him he has PD but he went into a denial mode. He threw away the doctor's prescription because of some side effects and went back to work.PD is a progressive neurodegenerative condition. It is caused by a loss of nerve cells in a part of the brain called the substantia nigra. This leads to a reduction of a chemical called dopamine in the brain. When this happens, symptoms occur such as a tremor (shaking in a limb), rigid muscles, slow and awkward movements, impaired balance as well as speech changes.Admittedly, the first three years were like "hell" to Ng because there were no specialists in the country from whom he could seek professional advice and treatment. His condition (stiffness) worsened and insomnia got the better of him. "I was frustrated as I was literally in the dark. It was very scary. At the end of the day, I could not walk properly because I was so stiff. I was walking like a robot. So I told myself that I must do something."Initially, he had to contend with constipation but it is now a thing of the past after consuming virgin coconut oil (VCO).Meanwhile, Ng lost his job after serving the company for 16 years, and fell into depression. "I felt hopeless and helpless, and could not control my anger."Subsequently, he went to Kuala Lumpur to learn more about PD from the Malaysia Parkinson's Disease Association. While in a hospital, he met a Professor of Neurology who had just returned from Canada. "He prescribed a unique combination of drugs to tackle each of the symptoms troubling me. That helped improve my condition, little by little. I also joined the association before initiating the formation of PPA in 2012."Sharing his experience, he said it took him seven months to get himself attuned to the right medication with help from the neurologist. "Only a Parkinson's specialist will know how to treat a patient with this condition. The result is not instant. I have to strictly follow the doctor's prescription and instructions."According to Ng, medication is very expensive to the tune of RM2,000.00 a month. "Medication is every four hours for life. I see the doctor every four to six months at the UMMC in Kuala Lumpur. We are very lucky in Malaysia because we can get our medicines at the general hospital."Offering tips on management of PD, he emphasised the importance of regular exercise, especially stretching, and taking up activities such as cycling, yoga, speech therapy, singing and dancing. "Yes, medication is important. It is 50pc together with doctor's help and the remaining 50pc is helping yourself. To achieve this, the key word is change. Build up your confidence and learn to adapt to your body reaction, example freezing up or stiffening."At this juncture, his ever supportive and patient wife Chris, an accounts executive, chipped in to say that family support is equally important.Meanwhile, Ng encouraged the parties concerned to attend the 5th World Parkinson's Congress to be held in Japan in 2019. "World experts will enlighten delegates on advances in the treatment of PD (if any) at the congress," he said.Apart from going to Korea to give talks on PD, he had also attended the 3rd World Parkinson Congress in Montreal, Canada (2013) and then the 4th World Parkinson Congress in Portland, Oregon, USA (2016).Stay up-to-date by following Daily Express’s Telegram channel.
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