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.

Patient Testimony

 

Parkinson’s patients have more than one life

 

“For the past two years, she has been totally bedridden. I had to help her in doing almost everything in her daily life – turning her body when she was lying in bed, getting up to go to the bathroom and feeding her. She lay motionless in her bed most of the time in the day. Her hands and feet often trembled violently. The truth is, I was as helpless as she was,” recalled En. Kamaruzaman B Yusof, as he narrated to me his ordeal as a Parkinson’s caregiver.

That was in April 2007, when he brought his wife, a young Parkinson’s patient, to my clinic.

His wife, Pn. Zanariah Bt Ali, was just 32-year old when she was devastated by Parkinson’s Disease (PD), an incurable nervous illness which usually affects the elderly people. Nevertheless, PD is occasionally seen among young people (less than 40 years of age). So, having heard this from me, don’t get shocked when you read this article about a young Parkinson’s patient.

She was still studying at a local university when she had the early symptoms of PD. “I had great difficulty in walking into the lecture hall. As my symptoms became more severe, I finally was forced to abandon my university study,” said Pn. Zanariah.

Day by day, her physical disability became more pronounced. Her legs felt heavier and heavier as time passed by. “Right from the early stage of my illness, my right foot was already deformed and bent inwards. It trembled uncontrollably especially in the early morning. I tried to massage my right foot, but it wouldn’t be straightened. When my foot deformity became permanent, I started to experience difficulty in walking. My right foot felt painful as I attempted to walk. Finally, I just gave up on walking, and that was how I ended getting bedridden,” added Pn. Zanariah.

She did seek treatment at a local government hospital. Unfortunately, she did not improve despite taking some medications. This was partly due to the side effects that she experienced with a few medications.

Getting increasingly frustrated, En. Kamaruzaman turned to traditional treatment. Despite this, his poor wife continued to suffer.

En. Kamarulzaman recalled his hardship in providing care to his wife, “I had to wake up several times at night to help my wife to go the bathroom. As she couldn’t turn her body while lying in bed, I had to do it for her, especially when she had back pain.”

When his wife was totally incapacitated by her illness, he had to apply for a “Disabled Person” card, which enabled his wife to get free treatment at government hospitals. At this juncture, he had actually given up on his wife’s illness, and thought that his wife would be permanently disabled. He just gave up on hoping.

One fine day, a neurologist at Ipoh, where Pn. Zanariah had been residing, decided to refer her to my clinic. That was the very first time I met Pn. Zanariah.

I remember seeing a very young Parkinson’s patient in my clinic. She was on a wheelchair, and obviously trembling and stiff. She brought a referral letter from Dr. Kathleen Yeap, a neurologist and good friend form Ipoh. Her face was full of hope and despair.

In view of her severe physical disability, I got her admitted to the ward for strict monitoring and intensive treatment. I immediately started her on Stalevo and Sifrol (Pramipexole), the two new medications for PD.

In addition, I also referred her to the physiotherapist, who did a good job in correcting her foot deformity and getting her on her feet again.

Within ten days after getting admitted, Pn. Zanariah started walking on her feet again, with the help of a foot-splint. Remarkably, she did not need a walking stick. I accompanied her when she walked out of her room, to the amazement of her husband. The next few days, she had started walking up and down the stairs. Having noticed her speedy recovery, I told her husband that she was ready to go shopping at the Midvalley Megamall. And she did, while she was still in the ward.

Today, she is learning to drive a car. She has even cooked a few items everyday. She has started considering furthering her studies at the local university. All her relatives are pleasantly surprised to see her waking again. Most importantly, her husband does not have to wake up several times every night anymore. Finally, both of them have found peace.

“I am very thankful to my husband, who has given all the support that I badly and desperately needed all these years. I would like to tell all the Parkinson’s patients that they do have more than one life, as I do.” That was her concluding remarks. And yes, she was definitely correct.

The moment a Parkinson’s patient is “rescued” from the initial physical disability, he or she is already given a “second life”. And after another ten years, when the medications are no longer that effective in helping them to attain a good quality of life, brain surgery gives them the “third life”.

So, to all the Parkinson’s patient who read this article, don’t give up. In fact, despite all your sufferings, you are different from all other healthy people in this world, because you have more than one life!

Pn. Zanariah with her husband – finally relieved that their ordeal was over.

Dr. Chew Nee Kong

30th October 2007.