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[back] Message from the President - April 2009 Sara Lew - 11 April 2009



Today, we celebrate World Parkinson's Day which falls on April 11 each year, to commemorate the birthday of James Parkinson who first identified Parkinson's Disease in 1817. Today is also called the Red Tulip Awareness Day because the Parkinson Community throughout the world, uses the red tulip as a symbol to create the awareness of Parkinson's Disease and to highlight the many challenges faced by People with Parkinson (PwP) and their families.

Parkinson's Disease is a chronic and progressive disease that affects the nerve cells in the brain. If you asked someone to act like an old person, he/she generally walks slowly, stoops forward, with hands shaking and perhaps shuffles his/her feet. All these are some of the symptoms of Parkinson's Disease. The ailment comes with aging. Pwp have movement problems, and they get worse over time. It is estimated that worldwide, 1% of people over the age of 65 years and 3% over the age of 80 are affected by it. Although there is no official statistics in Malaysia, it is estimated that there are between 15,000-20,000 in the country. The reason for the disease is not known and currently, there is no cure for it. As we are living in an aging society, we expect this figures to be on the rise.

Persatuan Parkinson Malaysia, is a national support group, which was formed in 1994, for PwP and their families. We play an important role in keeping the members connected with one another. We also help them to manage their conditions. We listen to their needs and carry out activities based on these needs. But as a patient group, we are unable do it all. We need the voice of the People with Parkinson's to be heard by the policy makers and those in the health services. We need the priorities and interests of people with Parkinson's to be taken into account in the policies of the decision makers. We need to bridge this gap between patient groups and decision makers.

Therefore, it is encouraging to see that for the first time in the history of our Association, a local council, the Petaling Jaya City Council or Majlis Bandaraya Petaling Jaya (MBPJ) has shown today its support for the betterment of PwP and their families. Today's event is fully sponsored and organized by MBPJ.

I am pleased to announce that the voice of the PwP is now being actively heard in MBPJ. Both Mr. Sivaraman Kannan, the Vice President of Persatuan Parkinson Malaysia and I, have been graciously appointed by the Datuk Bandar of MBPJ, Y. Bhd. Dato' Hj. Mohamad Roslan bin Sakiman, to sit in the The Disability Expert Team which is headed by Y. B. Mr. Anthony Thanasayan.

Despite the work that are being carried out by our association, we are still sadly, not recognized as a disabled group by our Government. Today, on World Parkinson's Day, we are handling over to Y.B. Tuan Dr. Xavier Jayakumar A/L Arulanandam, Selangor Executive Council Member and Permanent Chairman of the Health, Plantation Workers, Poverty and Caring Government, the name list of PwP living in Petaling Jaya for welfare registration, so that they can get the necessary support from the State Government.

Persatuan Parkinson Malaysia is also celebrating the World Parkinson's Day with a special recognition award to five members who are Petaling Jaya residents. The recipients include three Pwp and two caregivers who have inspired or made special contribution to the association.

I have two special persons to thank for making this event a success.

First, I would like to thank Y.B Tuan Dr. Xavier Jayakumar for officiating the World Parkinson's Day, and secondly, to Pn. Hjh. Sharipah Marhaini Bt. Syed Ali, Director of the Development Planning Department of MBPJ, and her excellent team for their fantastic support in organizing this event.

Last but not least, I would like to thank Y.B. Mr. Anthony Thanasayan, City Councilor of Petaling Jaya, the Chairman of the Disability Expert (OKU) Technical team . Without his kind and giving support towards our Association, this event would not have been possible.

In ending, I would like to wish everyone, A Happy World Parkinson's Day. Have fun.

Thank you.

Sara Lew
Persatuan Parkinson Malaysia