With not a doubt in my mind, I feel proud to be associated with the selfless heroes of our community referred to in these web pages, whom each have a story to tell about a PD sufferer whom they care for or, sadly, had once cared for.I have no doubt too, that many more of these silent heroes are patiently waiting by the side of their loved ones incapacitated by PD, attending to their every need in the attentive and patient manner familiar to all care-givers of PD sufferer, which I can only describe as an act of love.
I believe they are the sort of people who make up the strength of the NSPS and collectively their mental capacity and physical endurance as care givers is a huge blessing to PD sufferers in Negeri Sembilan and throughout Malaysia.
I personally feel this NSPS website is as much about care-givers as it is about PD sufferers and the disease that afflict them as NSPS itself will ultimately stand as a provider of care and support for the unique PD community, which grew out of the need for individual families to group together for mutual support.
Thinking of the challenges which these care-givers must surely face, I was struck by how greatly PD impacts normal functioning of the human body, and I was equally disturbed by the sad results of the incapacitation and disability that seem to freeze each PD sufferer into a state of highly restricted movement, impaired speech and reduced mental faculties at advanced stages.
I was struck and disturbed not by the sight of a person with PD but at the thought of how sufferers would fare later in life as the disease began to dominate their nervous system over time. I knew that I needed to be more aware and knowledgeable about this disease because I wanted to contribute to efforts to alleviate the anguish of being struck down by PD, in my capacity as President of PEKERTI (Association of Wives of Government Representatives and Head of Departments), including my role as Honorary patron and advisor not only to Negeri Sembilan Parkinson’s Society (NSPS) but also to several other NGOs.
However, I understand that the task of creating awareness about PD has been a challenge in its own right, posing bigger obstacle towards understanding much more than many other diseases that affect men, women and children, simply because it took so long for people to identify it as a disease rather than as a mental illness.
As such, I personally commend the steel resolve of care-givers to PD sufferers who still have to contend with the general public’s attitude towards PD in our country, which is at best a mere nod of sympathy and at its worst an absolute shunning and evasion of the subject altogether.
Let us all join hands today and renew our resolve to carry on with this very commendable and praise-worthy work of alleviating the suffering of PD patients. Before I conclude I would like to share a little rhyme.
Here goes ;
They are what they are,
Living a dimension of all things becoming forbidden,
No more a life of joys to be cherished and pain to be forgotten,
As each day the world draws further away,
While many stand back and say,
Whatever will be will be,
We must stand fast to lessen their agony,
Together with families and friends in the same room,
From the pain and gloom of doom,
We do it all so that we may say,
We have again made their lives gay,
And that pain,
In their lives will not again,
And that we strengthened them against the fate worse than the loss of life,
A terrible disease robbing them of control while still alive,
Surely we can never know their pain,
But a knowledge of their disease we shall commit to gain
Yang Mulia Raja Datin Seri Salbiah Tengku Nujumuddin