Rare Parkinson's Heroes Who Changed the World
Mr. Lloyd Tan is the icon and hero of the Parkinson's community. His spirit lives in us forever. Let us feel his energy as he guides us to live with Parkinson's, reaches out to us to give hope and inspiration.

My family and I didn’t know and understand at that time what the diagnosis entailed and none of us were aware of what the prognosis was for individuals with PD…we were totally ignorant then but after 7 years of living & coping with a Parkinson’s patient (PP) and with the knowledge and experience gained, gave us a better and wider insight about PD.

Cheerful and pleasant day! It is a great pleasure that I was being chosen and given the blessing of good health and strength by the Almighty to be involved with the Parkinson’s community. It is a total “ blessing in disguise “…especially with the inception of Negeri Sembilan Parkinson’s Society (NSPS) and NSPS website.The word Parkinson’s is no longer a very foreign word to me compared to 12 years ago…when my beloved late “Abah” was diagnosed having Parkinson’s disease (PD).

I am not an expert or a specialist on Parkinson’s disease (PD) though but because of the importance of sharing the richly rewarding experience and challange as a caregiver to my beloved late “Abah” who was a Parkinson’s patient (PP) and how the debilitating effects of PD has impacted my family and my lives thus I’ve learned and get as much informations about PD…which have been a great and valuable resources in supporting PP to lead a normal and better quality of life…

Coping with a chronic (ongoing) medical condition is already an enough challenge for all persons: patient, spouse, children, extended family, and friends. Everyone involved has his or her own emotions, finances, stress, worry, and frustration to deal with. It became much more daunting that our communities are not well aware of Parkinson’s disease, a complex neurological condition and there are still many PD patients out there who are embarrassed to come out going through the normal life and ashamed to acknowledge they are having PD. As we very well know, PD patients are increasing every year as the proportion of elderly people in Malaysia increases.

I realized that it was important to try and continue our normal daily activities as much as possible. Certain tasks may become difficult, but we stuck with it until we find the best way to overcome these obstacles. I found that keeping a positive attitude and going about a daily routine can be just as important as staying on medication in helping to manage the Parkinson’s disease for the long term.

Slowly and unrelentingly, the disease will take its toll, afflicting its victims with a wide array of symptoms. Most common are tremor, slowness, inability to control saliva and stiffness of movement and in some cases, impaired balance. PP may also experience other problems such as drooling, postural giddiness, aches and cramps, sleep problems, depression, hallucination, slurred /stilted speech and dementia.

It broke my heart that people would stare and sometimes talked & laughed when I used to bring my late father for outings. I exposed him to the public then, hoping that more people will be able to understand & accept PD patients with more compassion, kindness & love. Parkinson’s disease is widely under-recognized by the society and PD is still a “new” illness in the eyes of the public.

With an established treatment regimen, most patients come to accept that PD is part of their life, but it is not their entire life. In addition to treatment, supportive measures can help patient remain in control of the disease. My late “Abah” was a very good patient as he never complained nor whined but there were certain times during his medications, he became very active & did things out of the norm. He’d also hallucinate & say things that our family once thought created by his imaginations. As a caregiver, we also must be informed of the stages that a PD patient will go through so we will be better equipped & more sympathetic of their emotions & feelings.

Due to my late “Abah’s” indefatigable will, incomparable strength and indomitable patience to face the overwhelming journey and challenges of PD and to keep this memory intact and him, close in my mind and heart, I voluntarily devote myself in the Parkinson’s world, initially by setting up a Parkinson’s local support group in 2003 with the support of Dr. Chew Nee Kong and now spearheading Negeri Sembilan Parkinson’s Society (NSPS). 12 years dealing with Parkinson’s community, I sincerely hope the richly rewarding experience I went through can be extended to family members of PP and PP themselves and serve as an encouragement, motivation, inspiration and perhaps consolation…as till today PD has no cure, even the brain surgery does not cure PD…but life for PP has to go on…

As we all know, PD not only affects the people afflicted with it alone, this progressive disease also deeply involves family members relatively, friends and the community. PD impacts the patient and caregiver emotionally, psychologically, financially, relationally and socially. A positive sense of self esteem and the right attitude serve as good buffers from the impact of the illness and so, it’s our duty and responsibilities to offer love and compassion ensuring they deserves the best and better quality of life…

Permit me to quote a Parkinson’s patient’s “voice of heart“…

Life is unpredictable, but we face reality…whether we do so with a smiling or sour face…depends on how we look at things. Whether things are positive or negative, the sun still rises tomorrow, so why worry when others look at us with a funny face when we freeze or move slowly? I just tell them, “My dear friends, it is not that I am too slow, it is that you are too fast…” so please slow down and wait for me…

Thus, the fight and combating against PD is a joint and team effort that can only be effective and fruitful when everyone ie, Parkinson’s patient, family, friends, community, health officials and government…working together hand in hand…With this opportunity, I’d welcome all those interested to be in NSPS big family…

Therefore, creating better and greater awareness of PD among the society is fundamental and with the inception of NSPS and NSPS website, be a platform for all to get together, seek and disseminate informations, share notions/thoughts and contribute in any ways. I sincerely hope it will eventually lead to find a cure for Parkinson’s disease and make this world a better living for all especially Parkinson’s patient and caregivers. What is important is to never lose faith and to never stop living each day to the fullest extent possible.

It reminded me of one patient during the sharing of experiences session, positively said… “God have given us PD, we can’t run away from it, so to live life to the fullest, we have to accept it positively and confidently then we will overcome all the difficulties gracefully and live happily with PD”…That statement really gave a motivational impact to all…

Today it is clear…patients do not have to simply cope with Parkinson’s disease (PD). Patients can live with PD, and live well with it. A diagnosis of PD creates the need for changes in the patient’s life, some subtle, some perhaps more dramatic. But living with PD means as a person, and as a patient, they can remain in control of their life. With knowledge, acceptance, support, and determination, PP can move beyond simply coping with PD and live as fully as possible in spite of the disease…”there is still life after PD “…

Last but not least, I would like to thank especially Dr. Chew Nee Kong being the pillar of strength to NSPS and our Parkinson’s icon and selfless warrior, Mr. Lloyd Tan Pao Chan for introducing me to the Parkinson’s world and everyone, especially my beloved mother (Hjh Nafisah Binti Mohd Kassim) and family, that have helped me to continue this wonderful and beautiful journey in the battle to create better and greater awareness and to fight against Parkinson’s disease. Your kind and warm support and contribution is highly appreciated and it put me in high spirit, strength and confidence to gather all effort in striving for the “ betterment of the Parkinson’s Society “ today, tomorrow and forever…

A simple poem specially for all…

The road is long
And my legs are weary
Give me your hands and walk with me
And my journey will be lovely…

With your love, compassion and patience
I shall get along…
In reaching the destination…

So I pray everyone are in the best of health and mood and wish you a basketful and hugful “Terima Kasih”, Thank You, Merci, Grazie… specially from me and the NSPS team…

May God bless us all. Take Care and Avec beacoup d’amore…

“Be Happy and Smile Always’…

“Hands together in helping others”

Love,

Gharizah Hashim