In the name of the Almighty and Loving God:
Ten years ago, I came upon an article on PD in the “New Straits Times”, the local English newspaper. I just casually read the article as it seemed to be just another ordinary health report in the newspaper. It never crossed my mind that this “elderly people’s illness” would become an important part of my life many years later.
My beloved husband was a dedicated government servant who had served the nation with extreme loyalty throughout his working life. Other than having high blood pressure and gout, he was a physically fit man who exercised regularly. He played golf and jogged very frequently as advised by his physician. We used to walk together almost every morning at the housing area. He was also very careful with his choice of food – the chicken’s skin should be removed, the fish should be steamed and not fried, eating vegetables daily, etc. In order to keep his heart healthy, he avoided curry and egg yolk.
About seven years ago, after my husband had retired from his job, he started to develop some unusual symptoms such as weakness of body, difficulty sleeping and body ache. He did not seem to be his usual self anymore. He was not as active as he used to be. He needed me to help him bathing, eating meals and walking. At night, he could not turn to his side while lying on the bed as his body was stiff. Even his sleep was affected as he would wake up after about one hour or less.
As I had sensed that something was wrong with him, I advised him to consult his physician. At the clinic, I saw his physician giving him many instructions; “move your hands, grip my hands firmly, walk around”. During the examination, I noticed that the physician was very friendly but my husband looked “serious” – there was hardly any facial expression. When the physician finally informed me that my husband had PD, I was shocked. It reminded me of the article that I read in the “New Straits Times” several years ago.
Initially, I was very worried whether I could cope with my husband’s illness. So I searched the literature in order to understand more about PD. My children also helped out by surfing the Internet to study all the details of this illness. I learned about the symptoms and drug treatment of PD. I realized that all the available drugs for PD merely relieve the symptoms but could not cure the illness. I always pray very hard to God and wish that the cure for this illness will eventually be discovered, no matter how long it takes. I believe that there must be a cure for every disease in the world. God encourages all of us to work hard to overcome our problems in life. He says – “Your fate will not change if you yourself do not change”.
On my part, I decided to put in all my best efforts to help my husband to cope with his illness. I bought a massage chair that could help him in relaxing his muscles. I also got him a wheelchair so that he could move within the house more freely. At times when he was better, he used a “walking frame” to walk without my help. The floor of the bathroom was covered with “anti-slip” mattress in order to prevent him from falling. I also fixed a railing at the wall adjacent to the toilet bowl to help him stand up.
I realized that family support was very important for Parkinson sufferers. So, I tried to maintain a good relationship with my husband by cherishing all the good times that we had when we young. Every weekend, I would switch on to Radio 4 at 9.30 p.m. to listen to the “oldies” which brought back all the sweet memories. In the afternoon, I would play the Al’ Quran prayer tape that I hoped could bring some peace to his mind.
My role as my husband’s caregiver has been very tough and challenging. When he was healthy, he used to manage everything such as income tax, road tax, electricity/water bills, telephone bills and buying houses. I only had to worry about daily household work then. But now, I have to take over all these duties from him. I told my friends that I have become my husband’s “doctor”, “nurse”, chauffeur, “mother” and friend. I had to make sure that his medications were taken at the right time. Very often, I did not have adequate sleep. Interestingly, I have also become much bolder than I used to be – now I dare to drive my car to many places such as pension office, bank, etc.
After several years, the responsibility of taking care of my husband began to take its toll on me. As a result, I became physically and mentally exhausted. At times, I became confused and jittery. However, I managed to console myself by telling myself that all of us were only ordinary and imperfect human beings. There was a limit for whatever we could do in our life. I continued to pray hard for God’s help.
Two years ago, God eventually answered my prayer. One fine day, I received a phone call from Dr. Wong Chin Han, the Rehabilitation Medicine specialist at University of Malaya Medical Centre, Kuala Lumpur. He invited my husband to participate in an acupuncture program for three months at the hospital. Gradually, I found my husband’s general well being had improved to a certain extent. The acupuncture treatment seemed to be helping him.
Through Dr. Wong, my husband was referred to other specialists such as Dr. Esther (psychiatrist) and Dr. N. K. Chew (neurologist). I also got to know Mr. Chee Liew Seong, a Parkinson sufferer and the Vice-President of MPDA, who invited my husband to join theassociation. Initially, my husband was reluctant. But after much persuasion, he finally agreed. After becoming a member of the MPDA, he became more enthusiastic as he realized that he could learn more about PD. He had a much more positive outlook in life and finally had the courage to face the society. I am thankful to everyone who has given my husband a new life. May God bless all of them.
What touched me the most was the fact that all the MPDA members were really concerned about each other. During the meetings, they would enquire about each other’s health, regardless of race and religion – the “Malaysian spirit”. Their intimate relationship even gave me the impression that they had known each other for a long time.
Unfortunately, one year ago, my husband’s condition took a turn for the worse. He started to have unusual ideas about people talking bad things behind his back. He became suspicious of everyone including me. Every time his children joked and laughed among themselves, my husband thought they were ridiculing him. He became so bad-tempered and restless that I started to get sleepless nights again. Even though I found it very stressful and miserable to live with his abnormal ideas, I knew that I had to tolerate it all. Eventually, my patience paid off as my physician prescribed my husband a new medicine that could calm my husband down. All my husband’s bizarre behaviour and thoughts disappeared and he became his usual self again. What was remarkable was that my husband told me that he was keen to start a new life again. Since that day, my husband had transformed into a jovial and optimistic man again.
All my personal experiences in coping with my husband’s PD have made me a much stronger person. Most importantly, I realized that a wife’s love for her husband remains the best “treatment” for PD. Love stands above all in life – that is the truth.
I would like to advise all the Parkinson caregivers not to give up or despair. Take these hardships and challenges as a test of our faith in God. Your patience and perseverance will eventually pay off. I believe that if the caregivers shower the Parkinson sufferers with love and affection, God will bless the caregivers with long-lasting good health. To all the children of Parkinson sufferers, I strongly urge them not to neglect their parents. Do not leave them alone or send them to old folks’ home. Always remember their hardship that they had gone through for decades in order to bring their children up. Love them while they are still in this world. Do not wait till it is already too late, when whatever is done will not mean anything to them anymore.