Defining Moment - Signing of the WHO Global Declaration of Parkinson's Disease

By ANTHONY THANASAYAN

The signing of the WHO Global Declaration For Parkinson's Disease marks a special occasion for Parkinson's patients.

MY JOB as city councillor for Petaling Jaya and my work as president of Petpositive, an association for animal-assisted therapy for the disabled and elderly in Kuala Lumpur, often require me to attend social functions. Last Sunday I was invited to a gathering of people with Parkinson's.

The event turned out to be one of the most unusual that I had attended in a while. I was informed later that the experience was equally inspiring for the rest of the VIP guests seated at our table.

We were there together with about 200 people with Parkinson's (PwP), their caregivers and supporters, to witness the signing of an important document called the Global Declaration For Parkinson's Disease. The international charter was put together by the Geneva-based World Health Organisation in 1997. The charter for the world's estimated 6.3 million PwP (more than 15,000 in Malaysia) promises to make a big difference for PwP around the globe.

With Malaysia's signing of the charter earlier this month by the Minister of Health, and by PwP themselves last Sunday, it is hoped that the Government and healthcare providers would respect the rights of the PwP as laid down in the charter. The declaration stresses the need for access to appropriate treatment for PwP, as well as the right to manage their own conditions. It highlights the need for greater awareness of Parkinson's disease to combat stigma and discrimination. Special care should be taken to include the management of the side-effects of medication, especially for the elderly.

The official document also highlights the need to reach out to all ethnic and cultural groups to help them overcome the negative attitudes of society towards those with a chronic illness like Parkinson's. Partnerships between neuroscientists and health workers need to be encouraged to devise ways to improve access to care and treatment for all PwP.

(Pics compiled by Sara Lew)

The event was well-attended by people with Parkinson's, family members, and supporters.	Mdm. Jayalatchumy Cumaraswamy, Director of Community Development, Department of Social Welfare Malaysia, special guest of honour, officiated the event.

The most inspiring moment came when it was time for the PwP to sign the document. They came forward in their wheelchairs, pushed by their caregivers. They could be seen fighting with their conditions as they struggled to move their stiffened bodies and keep their hands still so that they could hold the pen and put down their signatures.

Mdm. Jayalatchumy signs the Global Declaration as MPDA's medical advisors, Assoc. Prof. Dr. Norlinah Mohd. Ibrahim and Dr. Lim Shen Yang look on.	Tuan Haji Jaharuddin Adam signs the declaration as a person with Parkinson's.	Philip Lee, signs the declaration in the capacity as the President of the Persatuan Pemulihan Parkinson, Kuala Terengganu.
Anthony Thanasayan, City Councilor for Petaling Jaya and President of PetPositive, an association for animal-assisted therapy for the disabled and elderly (http://www.petpositive.blogspot.com) was also present at the signing.	Standing from L-R: - Henry Chin, Sivaraman K, Dr. Dayal Krishnan, Loo Ee Ping, Datin Tok Puan Siti Ruhani, Sara Lew, Jayalatchumy Cumaraswamy, Philip Lee, Chee Liew Seong, Assoc. Prof. Dr. Norlinah Mohd. Ibrahim, Dr. Lim Shen Yang (behind) Seated L-R: Anthony Thanasayan and Tuan Haji Jaharuddin Adam.

When one of the speakers wished for a cure for PD within a few years, they all cheered as loud as they could with their weakened voices and tried to clap their hands as best as they could. When it was suggested that it was important for everyone to stay on top of their conditions no matter if a cure was found soon or not, everyone nodded their heads in agreement.

The half-day event which began at 10am and lasted until lunchtime at a hotel in Kuala Lumpur also had PwP actively participating in the programme instead of remaining as spectators as is sometimes the case when events are organised for the disabled. One could see how delighted they were to participate in the celebration.

Lai Kim Ting (PwP) belting out a Chinese Old Folk song.	The Trio - From L -R: Gina (volunteer), Cheryl Yeong (PwP) and Juliana (Volunteer).	From L-R: The Harmonica group comprising all PwP: Lock Kuan Hun, Cheryl Yeong and Koh Hun Wai.
Ng Chee Moh, a Pwp came all the way from Johor to attend the event. He gave us a pleasant surprise by giving an impromptu rendition of an English song on stage.	Lew Keng Sang (Caregiver-in light-coloured pants) amuses the crowd with two international songs - Hindi and Thai. Guests are also invited to dance on stage along with his song.	The Grand Finale led by Lock Kuan Hun as he performs "Rasa Rayang" with his harmonica. Everyone claps and sings along with him.

All the solo and group singing and dancing was therapeutic for the PwP as it helped loosen their stiff muscles, and gave them a much-needed workout. Some even played the harmonica; it got the rest of the audience clapping and dancing along. Some of them fumbled on an occasion or two. But the organisers in good sport just allowed them to start all over again until they got it right.

Most importantly, the PwP got to do what they wanted - no matter how slowly or how long they took to get it done.

The Filipino Strollers - Guest Performers.	From L - R: Dato' & Datin Tan Hang Kim, Philip Lee & Dr. Lim Shen Yang enjoying a performance presented by members.	Gary & Theresa Prior ( seated Left) were there as well. Other guests at the table include John Hagedorn and representatives from MBPJ.
Working Closely Together as PD Support Groups: Sivaraman K with Dr. Dayal Krishnan and Philip Lee of Persatuan Pemulihan Parkinson, Kuala Trengganu.	Mr. & Mrs. Don Calvin being interviewed by BERNAMA, Malaysian News Agency.	Our Master of Ceremony: Rizwil Ismail

Association president Sara Lew, meanwhile, said that more awareness will reduce the stigma associated with Parkinson's. "It will heighten community understanding and support, and lead to better quality of life for them", she added.

Lew stressed the need to bridge the gap between health workers and government bodies. "Everyone should learn what PD is, how it affects people with Parkinson's, and what we can do to bring about change wherever we are".

MPDA is presently pushing for PwP to be accorded disabled status to enable them to receive disability benefits. Living with Parkinson's disease had a profound economic impact, not only on PwP, but their families, said Sara Lew.

"It was a rare day out for PwP," observed Dr Norlinah Mohamed, one of the advisers for the Malaysian Parkinson's Disease Association in Kuala Lumpur, which organised the event.

Sivaraman's Angels: From L-R: Rose Hooi, Chew Bee Peng and Tan Teck Bee.	Wall of Hope	People with Parkinson's, family members and supporters.a

"It is vital for PwP to get out to have a good time with others so that they know they are never alone in their struggles," added the Parkinson's Disease expert who is attached to National University of Malaysia Medical Centre (UKMMC) in Cheras, Kuala Lumpur, and chairperson of the Movement Disorders Council of Malaysia.

Reference: http://thestar.com.my/columnists/story.asp dated 29th April 2010